Monday, May 2, 2011

Looking Back; My Signs and Symptoms of Leukemia

Our brains have a strange and very capable way of enabling us to cope with just about everything that is thrown our way. Looking back a month or two prior to being diagnosed with chronic myelogenous leukemia, I now am able to clearly see the signs that were right in front of me. Of course, my very capable brain was able to create a perfectly logical explanation for every one of my symptoms.

Probably one of the very first symptoms that I noticed, and disregarded, was my hugely swollen spleen. I remember lying in bed one night reading; I said to Joe, “You know, things just don’t seem to fit in here like they used to.” I just didn’t feel like I could get comfortable and that “things” were crowded on the left hand side of my abdomen; up under my left rib cage. It felt tight to the touch, but it also just felt thick, like muscle. It didn’t hurt and most of the time I didn’t even notice that it was there.

The second symptom that I noticed was probably the fact that I was just a bit more tired than usual. That symptom was easily discarded since Joe and I are always on the go. Our feet hit the floor running every morning and don’t stop until we go to bed. That coupled with the fact that I was soon to be 52, I just chalked being tired up to, doing too much and "old age"!

The third symptom was that I seemed to become a bit short of breath, when I danced. December was a very busy dance month for us as we were preparing to dance at the UCWDC World’s Championship in Nashville Tennessee, the first week of January. That year was the very first year that I had ever competed in anything in my life. We competed in the Pro/Am division and I was the Am. Dancing was something that I had wanted to do my entire life and I had finally begun to learn to dance a few years prior. Joe and I actually met when I took a class that he was teaching at a dance convention and now we are competing in the pro/am category.

So, back to my windedness; we compete in eight dances and while practicing our routines, it is typical to run through them one right after the other for an hour straight. I started running out of gas during practice several months before World’s.  When I was competing, I was wondering what the elevation of Nashville was, as I was a bit winded dancing there. I didn’t know if it was the elevation or my nerves, but I did notice that I was a bit short of breath after every dance. After competing at World’s, we took a short hiatus from practicing; when we resumed, I told Joe that it seemed weird how quickly I became winded. I had to stop between routines to catch my breath. I chalked that up to being out of shape, and for being a slacker for the past three weeks. Of course, now I know that it was a symptom of my leukemia. I did place eighth in my division at World’s; but I just know that if I hadn’t had leukemia, I would have come in first!! And no, there weren’t only eight in my division, there were twenty four competitors.

My fourth symptom was the bruising. Now I must preface this with the fact that I am very clumsy and am always bruised. I never remember where I got them; I just know that they are there. Looking back though, this bruising was different. The bruising on my body, just prior to being diagnosed with CML was a bit odd. I seemed to have more of them and they seemed to last longer. They were also hard to the touch; like a bulge under the skin. (This was from the overabundance of white blood cells.) They popped up with a slighter bump or bang than they used to. I noticed them and reprimanded myself to start being more careful. The odd thing about this symptom is that I KNOW that it is can be a sign of leukemia. When my daughter was only four years old, I took her to the doctor and insisted that he check her for leukemia because she was always covered with bruises. Yes, she was a tomboy and no, I didn’t beat her! It is amazing to me that I never correlated the bruising to leukemia within myself.

The fifth symptom was probably the headaches. I had been having headaches at the back of my head for quite some time. I chalked that up to needing my eye glass prescription updated and changed. The headaches seemed most prevalent at night, while watching TV or reading, or while working on the computer. In other words, while concentrating. Yes, I know, taxing on the brain! I made an appointment to go and see an optometrist on January 13, 2011. During my eye exam, while looking into my eyes with that very bright light, the doctor asked me three questions. “Do you have high blood pressure?” I answered, “No, I have low blood pressure.” “Do you have diabetes?” I answered again, “No, not that I know of.” “Are you anemic?” Once again I answered, “No, not that I am aware of,” “Why?” “You are frightening me, should I be scared?” He replied, “Well, you have a significant amount of blood in your eyes.” Of course, I freaked out a bit and asked him what it could mean. He said that he wasn’t sure, but assured me that I would not go blind, but also said that I should make an appointment to see a retina specialist within the next month or so.

Now you must remember that I have been dealing with Cipro poisoning for the past nine months. My immediate reaction was that this might also be Cipro related. I went directly to the pharmacist and told her what the eye doc had said and asked her what she thought. She agreed that it could very likely be Cirpo related as Cipro not only affects your muscles, joints and tendons; it can also affect your vascular system. That in combination with all of the Ibuprofen that I had been taking for the muscle pain, my vascular system could be compromised and my blood could be thin causing the eye bleeds. I left disgusted and prayed that it would not be Cipro related because if it was, there was nothing that could be done. Moral to that story, be careful what you wish for and be very specific when you are sending out prayers!

The sixth symptom was the night sweats. I had been having night sweats for approximately six weeks and would wake up damp and cold. I was constantly kicking the covers off and then pulling them back on, all night long. This of course I related to hormones. It was a no brainer and I would be talking to my doctor about it at my next appointment.

Number seven was the bite-like rash that I suddenly starting getting on my torso. You know that the first thing I did was wash my sheets and check the bed for bed bugs. I was convinced that we must have them and that I was just sweeter than Joe, because he didn’t have any of the bites! You guessed it, no bed bugs. I hadn’t changed detergent and I hadn’t been camping. My skin is still very sensitive and I really just want to run around naked all of the time as clothing drives me crazy. Let’s hope the phase passes!

The last and final symptom, and probably the one that would have eventually sent me to the doctor, was the extreme fullness I felt when I ate; and my funny blood. It was Super Bowl Sunday and I had a routine doctors’ appointment in two days. Joe and I were viciously trying to get our yard work done before the Super Bowl began.  I was mowing the front yard while he mowed the back. I remember finishing one side and looking at the other thinking, I just can’t do it! I was pooped and  had to force myself to finish mowing the lawn. I kept thinking what a baby I was being since I had mowed the front and back on previous occasions and never even been tired. I convinced myself to finish mowing and while doing so I pricked my arm on a rose thorn. It started to bleed and I ignored it. Joe had finished the back yard and had come to see how I was doing. I was through mowing and was putting the mower into the garage. Both of us looked at my blood and thought that it looked “weird.” We both said, “That doesn’t look right.” It was sort of an orange color, not really red. I still had not a clue; my brain and common sense in total denial.

Joe started the BBQ and I made a salad and veggies. We sat down to eat and within four bites I was stuffed. I thought that it was strange as I usually eat much more, but figured that my lunch was still with me. Being that Joe works for Anheuser-Busch, we of course had beer on ice. I found it odd that it took me practically an hour to drink just one beer. The Super Bowl was over and I was still miserably full. I wasn’t even able to go to bed until midnight because I felt like a stuffed pig. I was so miserable. Do you think that by now I would have a clue that something was terribly wrong? Looking back, I can hardly believe that I didn’t.

So, as a recap; my symptoms included fullness due to a swollen spleen, eye bleeds due to blocked and burst capillaries from an overabundance of white blood cells, shortness of breath, funny looking blood, tiredness, bruising, night sweats, a skin rash and frequent headaches. All of these I easily explained away and none of them interfered with my everyday life. Duh!

100 comments:

  1. I came across your blog from a google alert that I have for CML.

    I am in my 30's and have had CML for just shy of 10 years now and I sometimes look back to the months before I was diagnosed and like you, its easy now to see and understand some of the symptoms I had before diagnosis.

    I was an active early 20's male and just chocked up my tiredness to lack of sleep, my headaches to stress, my bruises to playing football and other sports. I remember now on a few ocasions an unusual feeling under and around my left ribcage but never thought much about it at the time. It wasn't until I was diagnosed that all of these things started to make sense.

    I've been pretty lucky in that I was able to get on Gleevec relatively early on in its life and that I responded well with relatively speaking minimal side effects. After reading what your cost is, I also feel quite fortunate that I live in Canada where its is covered by our health system.

    As a 10 year survivor, all I can say is keep your head up, enjoy the little things in life and make the most of your life.

    mjg

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  2. Well, thanks so much for stopping by and reading my blog. You were diagnosed very young. It is inspiring to hear how well you are doing and how long you have been on a very new drug!

    It's strange how your brain adapts to changes in your body. I suppose that it s a really good lesson to stay in tune with it, especially for us. And yes, you are VERY lucky that your meds are covered!

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  3. I enjoyed reading this....I was diagnosed in May of 2007 and had all those symptoms too!!! By the time I was put in hospital my wbc was 539,000!!!! I had to have a few rounds of Leukophresis and a week of chemo....(they thot it was AML)
    Now 4 years later I feel great! 3 years and 4 mos on Gleevec I didnt feel so hot and never reached PCRU (undetectable by BCR-ABL). Full strength Tasigna (800mg) was too much for me so I went out on a limb and only took 400mg and I still reached PCRU after only 4 mos!!!
    I really just live life normally now and think of my CML as being much like the underactive thyroid I have...I just take meds once a day for it. Of course that is the short story it hasn't all been that easy!! Goodluck and don't look back, this really is a very treatable disease, if only it had a nicer name 'Leukemia' sounds so final!!!! x Donna Berry

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  4. Just read your blog. Being diagnosed in May/June 2010 after over several months of the same kind. I also had nose bleeds at night, but did not think any thing of it. My WBC was over 590,000.
    Started on Nalotnib but my lipase numbers went up although the WBC went down. now just started Sprycel. Im rambling. Just wanted to say thanks reading about others going through the same as me does help.

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  5. Wow! I think that your blood count is the only one that I have seen higher than mine @ 382,000! Crazy, huh?

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    1. Hi I'm 23 and 4 the past 6 months I've been walking on nails not sure if I have leukemia I have everything but night sweats after having my son going on 3 years ago I lost a lot of blood I think when I went home from the hospital it was only at a 7 they wanted 2 give me blood but I was so out of it I said no anyways they told me that I had 2 get it back up bc I could get leukemia or my body would shut down and I'd fall over dead yea scary but they just told me 2 take iron pills and I would be fine well up 2 date 6 months ago I had another baby :) a girl and the day I got 2 go home the doc came in and said something with my blood isn't right and I need 2 do a follow up with the blood doc did had a cbc that showed my it was 3x over what it should be anyways I don't have insurance my doc is working on that 4 me guess I just wanted 2 know what any 1 else thinks I'm freaked I'm still young I have a 2 and a half year old and a 5 and a half month old little girl I should be in joying my life not scared thinking about if and when I'm going 2 die some 1 plz help me :(

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  6. hi all aged 34 female , just started glevec yest. thanks donna your comments have made me feel so much betta!
    im lucky they have caught mine early , just a blood test for feeling run down and a cold that wouldn shift. I live in perth western australia but from the uk.its hard without friends and family from home. Still trying to find the best way to tell my parents .... good luck and love to u all xxx claire xxx

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  7. So glad that you stopped by Claire, and yes, telling your family is really tough,just make sure they don't find out on facebook!
    My best to you,
    Michele
    http://www.leukemiasurvivor.co/2011/03/how-to-tell-your-children-that-you-have.html

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  8. ive been through the whole bed bug thing, the red spots/holes now esp on my back are multiply and getting wider. ive had the lump right unber/beneath my rib ages, i had tests low b12. anemic one doc spotted mt platelets are rather high for my low hb, but no action. i not a big eater anyway. i know i have lymphoma a ghost told me but no one wants to listen

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  9. im 29 years old, i easily get bruises, maybe due because i need vitamin C in my body, i wt 180 before so i undergone wt loses i never follow any diet plans of any sort i just do it exercise, eat enough, sleep enough, now im 127, the this is, from the past months i had fever like a week after the another, i always have tonsillitis,sometimes i felt like something is blocked in my throat, last year a pass a stool with blood on it but the dr told be it was because of a bacterial infection, now i feel heaviness on my breast and very tender, last 2 weeks i had fever, then i had this chalazoin in my eye, i also have night sweats from the past weeks, now my child has cough & cold now i also has cough & cold,.-any advice please? im a nurse and knowing all the signs& symptoms it is very difficult for me to accept it, i love my son so much and i dont want him to worry, he is to young but to smart know that something is wrong.

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    1. Please have your doctor run a CBC; your son will worry less if you are being treated. Being treated is better than allowing a disease to progress.
      My best to you,
      Michele

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  10. Well, I am certainly not a doctor, but I recommend that you see one and have him run blood work; a CBC for staters.

    My best to you,
    Michele

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    1. Hello, thank you so much for describing your symptoms. My dearly beloved sweet mom passed away five weeks ago. Almost all of the symptoms match. She was diagnosed with aplastic anemia. I think she passed away due to leukemia.
      May God bless her. Thanks JesusChrist, you are my counselor, prince of peace. I miss my mom so much, but I now she is doing much better in God's kingdom.
      Jorge Lopez

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  11. Jorge, I am so sorry for the loss of your mother. I am sure that you will always miss her, and hope that your memories will help to keep her close to you.

    May God Bless and Keep you Always,
    Michele

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  12. I'm 14, nearly 15, years old and I'm quite scared of getting leukemia. My mother mentioned it as a nervous joke once, and so I've been researching it once I realized the chance of my being diagnosed with it. The reason it had been brought up was because several things have been going wrong lately: I've had bruising up and down my arms and legs without my falling or hitting it on anything, I've been a lot more tired than I usually am, I'm getting a lot of those "bed bug bites" that you had mentioned, and my headaches are becoming a LOT more frequent. I'm not sure if these are all just coincedences, or if I should have them checked out, but thank you for posting this! The entire blog site is inspirational and helpful and really a pleasure to read.

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  13. Hello, Being that you are a young girl, I wouldn't worry too much, but you should probably be checked out. It may sound scary, but it is better to get treatment early, so that you can get better quicker!!

    My best to you,
    Michele

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  14. I have been looking for reasons of why I have been bruising, red dots on skin, headaches, tired every single day, and pain under my left side of my ribs and I fear I too have Leukemia. I have been getting bruises where I never have before, on my hands and arms. It seems every morning lately I wake up with a new one and its bad. Plus I get out of breath so easy, just walking up approx 17 stairs I have to sit. Is there anything else it could possibly be? Im worried.

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    1. Hi Motivated!

      So sorry it has taken me so long to respond to you. I have been extremely busy selling a house, buying a house, moving, getting married and having my grand children visit for a month. Then a trip back to Ca. and teaching at a dance event!
      I am hoping that this finds you feeling better, if not, I am hear to lend an ear.

      Please give me an update on how you are.
      My email is Meeeesh51@gmail.com if you do not wish to post here.

      My best,
      Michele

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  15. Hi Motivated,
    I am sorry, I do not know your name! And I think that all things considered, you had better go to the doctor and have him run a complete blood count. No need to worry or panic yet, as you do not know what is wrong, but trust me when I say this; The sooner the better...........please, please stay in touch, I will be thinking about you!

    Mt best wishes,
    Michele

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  16. My son got leukemia and he can be normal again? Doctor said that he would get well. but ... but

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    1. You need to have faith in your doctors; if you do not, look for new ones.
      I pray that your son will be healthy again soon.

      Michele

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  17. I have my yearly physical at my place of work in December and am waiting till then to have my blood test. I'm not sure I should wait. I only have 2 or 3 symptoms and it could be explained by other ailments. I definitely have fatigue. It started 2 months ago in late July. But some days are better than others. Some days seem almost normal while other days I can barely get through the day. On those days I'm so tired feeling and my muscles feel sore. It's hard to go to sleep even though I'm exhausted. I'm male, 6' tall and weigh 150 lbs normally. I now weigh 142 only because my appetite is just not there. I get full after a few bites. I don't have a swollen spleen or lymph nodes. I don't have night sweats. I do have frequent headaches that don't respond well to ibuprophen. Thanks for listening - David

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  18. HI Dave,
    It really is hard to tell if something is seriously wrong; or not! I went for quite some time ignoring my symptoms, that is for sure...the pure lack of appetite MAY have gotten me into the doctor, if I didn't already have a scheduled visit when it began.

    Please keep me posted on what you are up to.

    Thanks for righting,
    Michele

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  19. Thanks Michelle. I went to the walk-in clinic after work yesterday. The doctor (nurse practitioner?) said my lymph nodes in my neck were a little swollen. I didn't think they were but what do I know? She set me up for a blood test. I have a CBC order to take to the hospital to have blood drawn. The border of the CBC order is orange. I wonder if that means anything? She also said that my symptoms could be from a number of causes. - David

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  20. David,
    I am so relieved that you went to the clinic; and very glad that they are running a CBC. That should rule out quite a few things and give them an idea of what is going on with you!
    And she is absolutely correct; this could be any number of things. There are tons of those little infectious buggers running around out there! And as far as the orange border goes; I can't imagine that being anything but coincidence; haha...

    Please keep me posted,
    Michele

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  21. Michelle. It's anemia! Thank goodness. That's all I know so far. The clinic called yesterday and set me up with an appointment today with a hematologist. I may have to re-schedule as I'm so busy at work. I got some OTC iron yesterday. I think that should help.

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  22. David, That is awesome news; but do NOT put off the hematologist appointment....there are many different types of anemia and many different causes and we want to get you on the mend quickly!!

    Best wishes,
    Michele

    Health first, work second!

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  23. This comment has been removed by a blog administrator.

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  24. Hi Michelle,

    I'm 36 and had just given birth (my baby is almost 3 months), and Im having bruises for 3 months now. Also lately, feeling tired all day. I had my CBC and will just get the result today...I'm quite nervous and is panicking. Hope nothing's serious :(

    Regards,
    Beth

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    Replies
    1. HI Beth,

      Congrats on your baby!! Is it a boy or a girl? You know a new baby will make you tired...lol I had my youngest at 34 and I was exhausted for the first 6 months!

      As far as the bruising let's hope it is nothing serious, please let me know the results of your CBC.

      Wishing you the best,
      Michele

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  25. Hi Michele..
    My name is mary and I just wanted to comment on my situation. About a year ago I was feeling an uncomfortable left upper side feeling only when I laid on that side,i ignored it. This past summer July and August I had 2 surgeries due to endometriosis and to have a partial hysterectomy. I remember doing the pre surgery exam and the nurse pressing on my left part of belly an i almost jolted off the table. After back to back surgeries and pain pills I thought being tired was just part of recovery. But lately it has been so bad. I have over the last few years had many symptoms like yours. Now my left upper side feels like its going.to.bust out of my ribs and after eating it is like a football has.grown even with small meals! Plus I was having bouts of constipation and diareaha. I have had issues with my left leg for years also..pain ache ugh!! I always get headaches but just chalked them up to stress. I'm just thinking I need to see the doc asap after reading about leukemia.Its scary to think all the symptoms I have had oh including the bruises was just hormone related to my thyroid and endo. Now that my spleen feels like is going to explode its time to see someone to get answers. Oh yes by the way the night sweats I thought was my hormones also...I never wake to find myself drenched but I'm always tossing and turning to get comfy hot cold hot cold. One more thing is the lumps I get under my arm in the same spot come and go. Thank you for your post it brought me to the light.
    Mary

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    1. I know I am replying to my own post but after talking to hubby..he said well wouldn't they have found leukemia when they did blood work prior to surgery? Good question? Wouldn't they have?

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    2. Hi Mary,

      Here's hoping that you Do NOT have leukemia!!
      It really is amazing how we can ration away our body aches and pains, isn't it?
      I can hardly believe all of the symptoms that I had that I ignored.

      It does seem as though you should see a doctor; please insist that they do a CBC and let me know how you are!!

      Best wishes,
      Michele

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  26. HI Mary,
    If you had leukemia at that time, they would have likely found it however, CML tends to grow slowly with small increases in white blood cells, so it would never hurt to check!

    Better safe than sorry, right?



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  27. I'm only 14 but this site ir really starting to get me thinking. I've always been a little on the weak side but things are just getting crazy. I'm always so tired and weak, last time we did a 8min slow jog in gym I almost fainted. Even moving my arms and walking can be a chore, I no longer can run to my classes. My joints and bones always hurt. I'm always limping because of my feet, ankles, knees, and hips. Adding to that I'm one of the palest people you'll ever meet, funny thing is I'm a quarter native american. I'm apways out of breath should you be panting from going up 17 stairs? My eyes are crazy sensitive to light, I can't tyrn my phone brightness up all the way anymore or it hurts them. Even my headaches are getting worse, you know somethings up when your so used to pain that you don't take a tylenol. My appetite is not what it used to be, I can't eat as much in one sitting and some foods are starting to make me sick. I used to love cosmic brownies but now they're hard to stomach as a snack. I'm a teenager who is only 5'2" and 100 lbs. I'm always so hot at night now, I am flipping the covers off and on again. Somtimes during the day ill start randomly shaking or change temps really quickly for no reason. Everytime I've ever been to the doctor they always have said that my white blood cell count is a little high, funny enough I have a low immune system. In addition the spot right under my ribs is always sore for no reason at all. I don't get bruised often because of my lack of physical activity but when I do it takes them weeks to go away. I got a bruised toe in october that was still there in november. I'm always getting infections such as utis. Advice? What makes it even harder is that my ocd makes me hide the symptoms. Parents are really hard to catch on. I can't just walk up and say stuff. They'll think I'm paranoid.

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  28. I'm only 14 but this site ir really starting to get me thinking. I've always been a little on the weak side but things are just getting crazy. I'm always so tired and weak, last time we did a 8min slow jog in gym I almost fainted. Even moving my arms and walking can be a chore, I no longer can run to my classes. My joints and bones always hurt. I'm always limping because of my feet, ankles, knees, and hips. Adding to that I'm one of the palest people you'll ever meet, funny thing is I'm a quarter native american. I'm apways out of breath should you be panting from going up 17 stairs? My eyes are crazy sensitive to light, I can't tyrn my phone brightness up all the way anymore or it hurts them. Even my headaches are getting worse, you know somethings up when your so used to pain that you don't take a tylenol. My appetite is not what it used to be, I can't eat as much in one sitting and some foods are starting to make me sick. I used to love cosmic brownies but now they're hard to stomach as a snack. I'm a teenager who is only 5'2" and 100 lbs. I'm always so hot at night now, I am flipping the covers off and on again. Somtimes during the day ill start randomly shaking or change temps really quickly for no reason. Everytime I've ever been to the doctor they always have said that my white blood cell count is a little high, funny enough I have a low immune system. In addition the spot right under my ribs is always sore for no reason at all. I don't get bruised often because of my lack of physical activity but when I do it takes them weeks to go away. I got a bruised toe in october that was still there in november. I'm always getting infections such as utis. Advice? What makes it even harder is that my ocd makes me hide the symptoms. Parents are really hard to catch on. I can't just walk up and say stuff. They'll think I'm paranoid.

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    1. Every symptom your describing recon sound like an autoimmune condition. Get a CBC and if that is inconclusive see a rheumatologist.

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    2. I was thinking the same thing, Anonymous. It could even be fibromyalgia. I have that and have had for 30 long years.

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  29. Well, first of all, thank you so much for writing. We all have a unique way of ignoring and hiding our aches and pains!
    This is not always a good thing! I ignored all of my symptoms WAY too long and I am very, very lucky that I am still alive, today, to talk about it.
    It seems highly unusual that you would be so tired at your age. and that you feel so miserable.
    The first thing that I am going to ask you is that you said that you were/are "sick".
    Have you been given medicine while you were sick? IF so, do you know what type?
    This is VERY important, considering your symptoms. I want you to find out if you have ever taken Cipro (Ciproflaxen) Levaquinn, or Avelox.
    These antibiotics COULD cause your symptoms. Please get back to me on this before I say any more.

    Again, thank you so much for writing, and please let me know how you are doing,
    Michele

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  30. I haven't been to the doctor in months. I've never taken those meds ever. My choices are kinda limited because I'm allergic to pennicillan.

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  31. OK, that is a good thing! Now, you need to tell your parents and have a blood test; sometimes when you have high white counts the white cells are immature and that is why you get sick.

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  32. Hi Michele been reading your blog, and wondered if you could give me some advice, I've had large red blood cells for quite some time, doctors done loads of blood tests including b12 and thyroid all came back good, I've had anaemia on and off for a few years,on visit to hospital rewarding these blood cells, the doctor said the next step was to do a bone marrow test to check for lukemia, however I have problems with my bones and don't heal very well, so she suggested to hold back on the test,the highest my bloods I think have been is 115, which I understand is not over high,symptoms I have
    are night sweats,the bed bug itch/spots, joint pain in my lower back, headaches, and every day I am just so tired with no energy at all, I don't know weather to insist on the bone marrow or to just Waite and see what happens, thank you




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  33. Hi, Glad you stopped by; I suppose that depending upon your age, and how long you have been having the night sweats and other symptoms, I would probably go ahead and have the bone marrow biopsy, just to rule out leukemia.
    If by some chance that you are as lucky as I am, then the sooner you diagnosed and treated, the better.

    Let me know how you are doing,
    Michele

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    1. Thank you for getting back to me so quick,I am 42years old and been having night sweats for a few years,I thought I was going through the menopause, blood test ruled that out,I have had unexplained bruising but only 4 to count, except wen I went on some new meds which after a week I had to come off due to a reaction of server itching,at the time I had massive bruising to the inside of my thighs due to scratching, which shocked me.I have lost my father 2 sisters and a brother due 2 different types of cancer,not to mention aunties and 1 cousin,so u can imagine when the doctor mentioned leukemia to me I went in to overdrive,Its hard as not sure what I should do next, the other thing I would like to mention is that the doctor's have never asked me if I've ever had any symptoms,and I'm not one for saying how I've been feeling in case it's nothing,I would like to say thank you for taking the time to read/listen its been nice to be able to voice how I'm feeling with out worrying my family, I wish you well.















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    2. no, problem!
      I know that it is often easy to ignore or explain away our own medical symptoms, which is precisely why my leukemia was so far advanced when I was diagnosed. I was extremely fortunate that I was not in blast crisis and I now wish that I has seen my doctor sooner.

      It is really, really important that you are your own self advocate and that you tell your doctor of ALL of your symptoms and that you insist that her, or she get to the bottom of it.

      It sounds as though you have lost enough and you really need to get your health back!

      I wish you well, too....please keep me posted!
      Michele

      Delete
  34. Hi just come across your post looking for advice really had a blood like rash in jan went doctors then had blood test found my white blood count low and been feeling very tired all time its weird I have had late night sweats etc but ive put them down to hormones as only been on a few occasions so have not menyioned this to the doctor but have the rest I have now had blood test twice still low and now hot to have a 3rd 1 before they will refeer me to hospital I have also come out in this rash where i tjought it was bites told the doctor but they said there not worried about that just use moisturiser they said I shouldnt be worried as I look healthy so do you think they are right

    ReplyDelete
  35. Hi Michele,thank you for sharing all your symptoms.I have unexplained bruising & night sweats then freezing cold,duvet on-off 0n-off all night.I put it down to menopause.Sometimes I get a feeling which I can only describes as someone pouring cold water through my veins.I went to my Doctor today & she wants me to have full blood tests next week.Quite an anxious time.I will let you know how I get on.Many thanks

    ReplyDelete
  36. Hi Michle, you are doing a wonderful job thru your blog. Congratulations and god bless you for doing great to the man kind.
    Really appreciate your efforts and sharing.
    my son is having evening low grade fever for last 3 months, did pet ct scan which is normal. now doctor is suggesting bone marrow probably for ruling out leukemia. out of the symptoms u mentioned i see two present in his case - (1) short of breath (this i have been noticing for 3/4 years now, his age is 10 years (2) headches (say once or twice a week). He also has nose bleed problem for several years. Wanted to undersand what are the ealry signals of leukemia in the CBC / ESR etc.

    ReplyDelete
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  38. hi my older sister 46 just went hematologist last week after being referred by by er dr because her cbc was not good low hemoglobin low platelets high wbc she had some bruising and extremely tired the hematologist sent her to get 2 units of of blood also gave her iron through her iv she has to go back Wednesday may 1st to get some results he said she would have to have more blood and test what does this mean iam really worried

    ReplyDelete
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  43. Good Morning. I am so sick everyday, so tired, pale, dizzy with recurring headache in the back of head and neck. I just feel plain lousy. My blood work came back showing anemia and high white blood cell count. I feel nauseated as I write to you. I have also lost 10 pounds over the last several months, which is very unusual for me. I tend to stay the same weight no matter what. Oh, and the cough and frequent "colds". Chills and then fever. I need to make an appointment, but have to wait until June to get in. Just needed to write to you after reading your blog. The picture of the "bites" looks just like mine. I started getting those a few years ago though and I could never get a logical answer about them. They bleed real easy as well. Will let you know what my doctor decides to do about my large range of symptoms. I need some help. Thank you so much for listening.

    R. Turner

    ReplyDelete
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  46. Hi Michelle, I have been searching for months trying to find what all these symptoms are and yours seem to match exactly. I am on a waiting list trying to get a doctor to see me. I am over 50 and haven't been able to work since September of last year. Every symptom you described I have and all in the same order. Even thinking I had bedbugs. I am thankful I found your post...At least I have an idea what the doc may want to be looking for.

    ReplyDelete
  47. Hi Michelle,

    I am 25 years old and have basically all of the same symptoms as you. I go to the gym on a regular basis and just recently started to get really short of breath, I have to take a few extra minutes to catch my breath in between machines. I bruise really easy, I walk by something and just hit my arm on it, I wake up the next morning with a bruise. I also cannot eat that much I get so full after taking a few bites of my breakfast/lunch/dinner and I feel so full I can barely move. One other thing that is weird for me that you did not mention is that my gums bleed a lot, I wake up in the morning and I have dried up blood on my teeth. I am scared to mention these symptoms to my fiance because I don't want him to think I am over reacting. I also don't know if I trust my doctor enough to tell him about these symptoms and have him take me seriously and do the appropriate tests. I'm going to try and talk to him and see what he says. Thank you for writing you blog as it has helped me realize that I can't take these symptoms lightly. Hope all is still good with you!
    -Brittany

    ReplyDelete
  48. Hi. I'm 12 years old and I have anemia. I've been having bad headaches and hot flashes and I get really hot at night. My stomach really hurts after I barely eat anything and I get really dizzy. I get out of breath easily and I get really bad pains in my back and the sides of my chest around my ribs. I told my mom and she said it was nothing and its probably just growing pains. I asked her to take me to the doctor but she said no. I'm very scared. I don't know what it is

    ReplyDelete
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  50. Dear ,
    my beloved wife (35yrs )just passed away she just produced all the symptoms like high bleeding on her periods day, reddots, short breath, weakness, extensive sweating etc, but all these came a week prior to she passed away ..her WBC was also high , platelets count was too low 29,we hospitalised her on thursday 2nd may after making doing all blood tests, and bone marrow, my doctor told me to travel to India for treatment .we stay in Tanzania , i traveled with her on friday , by the time we reached next morning at 10am th just stayed 15 minutes in the emergency unit bed and she passed away ..doctors told me that her heart went without blood ..
    after her more test she was diognised with AML(acute).
    my question is does a person die in such a short time ?? 3days from when is diognised
    Anand

    ReplyDelete
    Replies
    1. Bhatias,
      I am SO sorry to hear about your wife; it truly is a shame. She was just too young to die.
      Blessings to you and your family,
      Michele

      Delete
  51. Hi..Im Ashley..My question is whether Leukemia survivors can lead a normal life like every other normal person?.. whats the chance of getting the disease again? Looking forward to hearing from you..

    ReplyDelete
    Replies
    1. HI Ashley,
      I think that once a person has had, or must live with cancer, a new normal is the reality. We do normal things, but not always the same way that we used to.

      Sometimes there is a new profound gratitude towards life and sometimes there are physical changes in our bodies that cause us to adjust to our new normal.

      Do you have leukemia?
      Michele

      Delete
  52. Thanks, Michelle,
    I need help with financing natural treatment--do you know of creative ways people can pay for natural stuff to treat ALL? At this point, our daughter doesn't have it yet, but is very close. We are trying to prevent it, but it is very expensive, because it's all out of pocket. How do families cope this? I don't want to get into a debate about how to treat her, just looking for solutions.

    ReplyDelete
  53. Ugh, Jennifer...I really don't know, I know that many people hold fund raisers and such, but I really am not sure. How old is your daughter? Do you have medical insurance? Maybe a study?

    Keep me posted,
    Michele

    ReplyDelete
  54. Hi I typed in my symptoms n was brought to ur blog, I have been dealing with the byte type rash for some time now as well as being easily tired n short of breath. I have been to the Dr quite a few times for the dry irritating cough, they give me antibiotics n send me home. Recently I began getting large very dark bruises without even so much as bumping myself, they don't hurt but they are unsightly for sure. I two get full fast even off fluids but I've put weight on. Any insight would be helpful.

    ReplyDelete
    Replies
    1. Hello,
      I would suggest that you have a doctor run a complete blood work up just to rule things out!

      Hope you are feeling better,
      Michele

      Delete
  55. Hello Michele.

    Great blog you have here. I wish all the best for you and for everybody.

    I kept having a mildly sore throat, very mild headaches every now and then, tiredness (more than usual, but to be honest I am not exercising at all), a bit of dyspnea and for a few days I felt full as I was eating (I don't have this anymore though). These symptoms are recurring and are very mild (six months now). I also had a couple of glands swollen a bit for a day each, non recurring.

    At the beginning of my illness(six months ago) the GP told me that it is a virus and I may have this thing again. And I keep having this for a fourth time now. I was told the same thing by all three doctors that I visited.
    Today I visited a fourth doctor and she told me that I may have glandular fever - this gives these symptoms and that I shouldn't worry. However, she mentioned that if this was something serious (e.g. leukemia) all symptoms would have been worse. If this thing persists I should have a blood test just to feel better.

    Ah, I forgot to mention: I had a normal blood test a couple of months ago, the whites were on the lower part of the normal range, but within normal limits. The doctor told me not to worry and everything seemed normal. If I had something bad, wouldn't it show during this blood test?

    I am here because the doctor mentioned the word leukemia, even by saying that "if it was that, the glands would have been bigger and I would have had more symptoms".
    I feel worried, but all doctors told me not to.

    Any thoughts?

    ReplyDelete
    Replies
    1. I should also say, that recently I gained some weight too.

      Isn't it on the contrary of leukemia?

      Delete
    2. I am 67 years old and had some of the same concerns that you had. Blood behind the eyes, tired all the time,
      bug bites etc.. I was some what concerned and thought my type 2 diabetes was getting worse (I have had that since
      age 42). Two years ago, I had a triple heart by-pass and
      thought the sweats were heart related.

      Finally I went to my primary care doctor and was called
      immediately by him and told that the blood work showed that I have leukemia. It was confirmed after a bone marrow
      test that I have CML Leukemia. That was in Dec. 2012,
      just 4 days before Christmas. I am being treated by a
      half of Gleevic pill daily.I also get blood transfusions,
      as needed.

      I try to be positive.With all of my many alliments, my
      doctor told me that I will probably die with something
      else before leukemia. I have not ruled that out yet,
      but I just wonder about all of it. Thinking positive
      has helped me to focus on God and I pray for others
      as well as for myself.

      My family (2 wonderful nurses) have been very support-
      ive in getting through all of my concerns. I wish the
      best of health to all of you!!

      Delete
    3. I am hoping that you are feeling better!

      Delete
  56. Hi, my name is Donna. I am 47. I have had similar symptoms for nearly a year now. I as well kept making excuses for symptoms since my doctor didn't seem concerned. I have made several trips to my primary doctor, an allergist, and an Ear, Nose, and Throat specialist that referred me right away to a hematology oncologist. My appointment is on August 28th. Hoping for some answers.

    ReplyDelete
    Replies
    1. HI Donna,
      I was wondering how your appointment in August went?

      Hope you are well,
      Michele

      Delete
  57. Hi I'm 20 years old and I googled my symptoms and lukemia came up. This entire school year I have had problems because I feel so weak and I have had energy. Fot the past month I havent been able to eat anything because I feel completly full however I had the same problems last year and discovered that i had a large amount of acid in my stomach so I chalked it up to that. But what really got me thinking of lukemia is my latest symptom.two days ago I noticed two large bruises on my legs that I have no recollection from and then yesterday my dog jumped on my and scratched my leg which hurts today and is this big purple bruise. I am on a low blood pressure medication of 12.5mg and stopped it today because it can cause blood thinners. I am going to go to the doctor tomorrow and ask them to check my blood count because I also have my lymp node swollen

    ReplyDelete
    Replies
    1. Hi Sanja Nonkovic!
      I am trusting that you have seen a doctor by this time?
      I was wondering how you are doing?

      Blessings,
      Michele

      Delete
  58. I am 46 years old and went in for a normal physical. My white count was low and for the next 3 months had labs to see if it would improve (the doctor believed I had a virus). She finally sent me to a blood/cancer specialist and I was evidently diagnosed with LGL Leukemia and rheumatoid arthritis. I had no symptoms at all. After starting an oral chemo drug, I had a severe reaction and spent two weeks in the hospital. For now, I am keeping my counts normal using steroids. I currently have headaches, weight gain and night sweats/hot flashes. Evidently, I will have to try a new chemo drug. Anyone else out there have LGL and can give me some insight or advice?

    ReplyDelete
    Replies
    1. Hi Jen,
      I do not know anyone that has LGL, but I will put it out there and see; is there a specific way you wish to be contacted?

      Delete
  59. Hi Michele,

    I have been having a lot of the same symptoms as you did, but am missing a few. I am waiting for more blood tests to come back. I struggled with depression and chronic anemia for quite a few years. I recently had IM iron injections as oral was not working. My hemoglobin still has not come up after 13 weeks of injections and my dr has referred me to a hematologist, hemoglobin hovers around 103-115 mark and ferritin is on the low side at 39 and doesn't come up with treatment...(no apparent bleeding, PCOS with last menstrual cycle over 4 months ago, not pregnant). My inflammatory markers are up with a CRP of 54, white blood cell count only slightly elevated on a continuous basis at 15. I have an odd rash on my ankle that has been there since summer 2013...looks like shingles but no other symptoms of shingles and only the one spot. I have hypthyroidism, PCOS, pre-diabetic. Recently noticed bruising only on my buttocks and hips, I have been forcing myself to use and exercise bike (perhaps bruising from the seat?). Bruising not completely consistent with the IM injection sites. Fatigue has been so bad lately that I have had to start using a walker...I am only 34. Dr is leaning more towards lupus because of my CRP, but are some of the symptoms consistent with leukemia.

    ReplyDelete
    Replies
    1. Eilyn,
      I am hoping by now you have some answers and are on your way to recovery???

      Blessings,
      Michele

      Delete
  60. Stumbled upon this while searching for some answers for my daughters symptoms (not always a good idea, I know) A few months ago she started having pains in her hip and down to her knee, the pains tended to come and go (and still do, although they are coming more frequently) First diagnosis was growing pains. The pains continued and her hip began to look "twisted" and pushed to one side, she also developed a limp. Returned to doc about 4 weeks ago, doc sent her for an x-ray of her hip, results came back normal. Since then she has continued to limp, even on days when she says she is not in pain. Sometimes we can be walking along and she just seizes up and is unable to move for a few minutes. She also started complaining of discomfort in her chest area (from her shoulders down to the top of her tummy) and has started to get puffed out really easily. She has always been very fit, and loved long distance running, but now just walking up the stairs leaves her exhausted! She has had to stop taking pe at school and she goes to a dance class 2 days a week with her sister but has to spend most of the time sitting at the side! I have gone along with them to class and even when she tries to take part, its painful to watch her! Every movement seems so much of a struggle for her! We have discovered a weird sunken area on her thigh, and the bottom of her back has a bulge on one side (seems like it is just the muscle???) She is pale and exhausted looking. She has also complained of feeling uncomfortable and very full after eating. No mention of night sweats and no weight loss. She has always been very thin, but seems to be getting a sticky out tummy (only the area below her belly button) No bruising/spots but was reading a previous comment about periods. My daughters periods have started to last a few days longer than normal (she has not had her periods for very long) and she used to get through one pack of sanitary towels on a period, she is now getting through 3-4 packets! I feel like I am probably just being over paranoid, but thought I would ask anyway. We have the docs again in 4 days time, but any advice from anyone would be appreciated

    ReplyDelete
  61. This has been very eye opening. I am currently 58 years old & have been sick almost as long as I can remember. My first unexplained pain that I can remember, I was 21 yrs old & had painful aches in my left leg. After seeing a number of Doctors, I agreed to see a psychiatrist (a quack). He said it was god's way of punishing me for being on the pill. Two yrs later I was diagnosed with Endometriosis and Cervical Cancer, I underwent surgery & over the next five yrs had numerous surgeries which finally ended up as a full Hysterectomy. The leg pains seemed to have stopped but by age 30 I developed Vaginal Dysplasia & every year for over 15 years I had to undergo surgery. At age 40 I had a severe pain on the right side of my head and was diagnosed with a form of Fibromyalgia ,which I still have shots for monthly. At 42 a major heart attack, and at 45 a small stroke. I took a bad fall about 7 yrs ago and now have pain on my left side just below my breast & below my rib cage. I have been experiencing severe pain to my back, left knee & hip. About 9 mths ago I was diagnosed with high blood pressure & was put on medication. Approximately 7 mths ago I noticed heavy purple bruising on my arms. I have no energy at all, I don't want to get out of bed, get dressed, shower or do anything. I do experience night sweats but put it down to all my medications.I also can't explain how when I eat I sometimes feel like I am going to explode after a few bites & at other times I can eat normally.I spoke to my doctor but he assures me that none of my medication could cause the bruising. The only aspirin I take is an 80 mg baby aspirin. The bruising looks like an 80 yr old person after surgery. My doc. did a complete blood work up & said everything is fine. He has now referred me to a dermatologist. Am I crazy or should I be asking him to check something else?

    ReplyDelete
    Replies
    1. Wow, Debbie, it seems to me that you have been through the ringer. I would start by going over ALL of the side effects of ALL of the medications that you are on.
      And then I would find a new doctor; one that considered your BIG picture. You have gone far to long without answers.
      Please keep me posted,
      Michele

      Delete
  62. my sister has been diagnosed of AML on march 21, 2014. we are still now in the hospital... she had her chemo on april 25, and now ended the therapy yesterday after 6 bottles. the doctor said she has 0 WBC now... My sister doesn"t feel any tiredness. Just the recurring of fever of up to 39.6... We wonder if we can go home after this. Does this mean she is now undergoing remission because aside from fever, the responses are all positive as the doctor calls it... And her rashes is terribly appearing now that is warm when you touch it. The doctors cannot determine where the fever came from... all her laboratories are all normal..

    ReplyDelete
    Replies
    1. Leukemia is a complicated blood cancer and there are not easy cut and dry answers, hopefully she continues to improve and you can go home soon!

      Blessings,
      Michele

      Delete
  63. Hi, I'm 14 years old male 90lbs, 5"5 tall
    When I was 11 I had a fever plus I have some spots or rashes but we didnt knoq the cause so we went the doctor. The doctor said that my WBC plus its a sign of leukemia. We did an x-ray but I didnt know the results since I was still a child back then. We didnt have any follow up check-ups since then.
    3 years later I seem to notice that my immune system is become low, frequently having coughs(acute bronchitis in my medical certificate), shortnees of breath (I dont know if its related to our hereditary disease in the heart, since my grandma died of heat attack, my father & uncle had been diagnose of symptoms of heart attack), when running or even walking too much sometimes even a little walk cause some pain in lower left ribcage and recently I had been diagnose with some allergy( rashes that itchest all over my body even in my scalp) with no cause, my parents didnt want to have a CBC( I dont know if they just dont want me to panic ) plus recently I seem to notice that I have a lot (tiny) scratch. I dont know if I'm just being paranoid but do you think the leukemia could have developed after this 3 years

    ReplyDelete
    Replies
    1. Hi, I'm 14 years old male 90lbs, 5"5 tall
      When I was 11 I had a fever plus I have some spots or rashes but we didnt know the cause so we went the doctor. The doctor said that my WBC is high plus its a sign of leukemia. We did an x-ray but I didnt know the results since I was still a child back then. We didnt have any follow up check-ups since then.
      3 years later I seem to notice that my immune system is becoming low, frequently having coughs(acute bronchitis in my medical certificate), shortness of breath (I dont know if its related to our hereditary disease in the heart, since my grandma died of heat attack, my father & uncle had been diagnose of symptoms of heart attack), when running or even walking too much sometimes even a little walk cause some pain in lower left ribcage and recently I had been diagnose with some allergy( rashes that itch all over my body even in my scalp) with no cause, my parents didnt want to have a CBC( I dont know if they just dont want me to panic ) plus recently I seem to notice that I have a lot (tiny) scratch. I dont know if I'm just being paranoid but do you think the leukemia could have developed after this 3 years

      Delete
    2. Hello,
      Where are you located? And yes be sure to explain your symptoms to your parents so that you get the medical attention that you may need.
      Please let me know how you are doing.
      Michele

      Delete
  64. Hey Michele. How are you? I'm so glad I found your blog. I had leukemia in 2010 and I'm 20 yr old now. I thought after finishing all the treatments I'm going to be free from cancer. Even though my doctor said it would take at least 5 years to confirm it. The reason why I said 'free cancer' because I have the symptoms back like tiredness (all I want to do is sleep) and bruises in my right leg. I don't know what to do.. My appointment will be next two weeks.. I just hope that it's not leukemia again. I'm so worried that I can't even concentrate my studies.,. :S I'm just glad there's someone that shares the same experience with me. Thank you for reading :) -Nisa

    ReplyDelete
    Replies
    1. Hi Nesa,
      I certainly hope that all goes well on your next appointment and that you will continue to be cancer free!
      Best wishes,
      Michele

      Delete
  65. Hello. I am 29 and have had a lot of these symptoms. Well I talked to my doctor a few months ago and she thought I was just premenopausal so she suggested I take some over the counter meds to help with the night sweats and the headaches but they don't seems to be getting better and I am a little worried.

    ReplyDelete
  66. Hi Jennifer,
    If you are really worried, your doctor can do a simple blood test. If nothing else, it will put your mind at ease.

    Keep me posted,
    Michele

    ReplyDelete
  67. Michelle,

    My name is Mark. My wife Mary (whom I have known since I was 5 years old and we have 8 children) was diagnosed with AML in September of 2013. We are both 45 years old, So. California area. She had all the symptoms you described. Her 30 days induction chemo went well. So did her first maint. treatment. Her second treatment did not go as planned. She developed a chemically induced infection that tore her bowels and intestines and she began to leak bile fluids into her body. 2 days went by and they still did not pin point the problem. She was in ICU and I was was helping her from a chair to her bed when she went into cardiac arrest. The team brought her back and she was unconscious on life support. They finally figured out what was wrong and determined within hours they needed to perform surgery. They gave her less than 10% chance to live, but she did. That was January 22nd. She has been steadily doing well since then. In 2 weeks she will have a test to see if she has made it 6 months cancer free. (since her last treatment) She has been doing well so far. In fact her progress has been labeled as "way above average". But in the last few days her legs have been hurting very bad. She is again becoming tired sooner than usual. Like you, she easily dismisses these symptoms with pushing herself to far and doing/sitting/driving too much. I hope she is right. No bruising like before, not quite as tired as before. And a platelet test last week shows number was up in the normal range. But we are both worried. We know Leukemia can show up in 24 hours. Its hard not to worry. I stumbled across your blog and thought I would read and share. She is taking the kids to the coast for a few days. When she gets back her oncologist will sit with her and go over the results. We are both hopeful and worried all at the same time. Just thought I would drop a note to contribute to this thread of hope and courage. She was supposed to die several times during this ordeal. (as you may guess I didn't write everything).......

    Mark-

    ReplyDelete
    Replies
    1. Mark,
      Thank you so much for sharing! Our innate sense of survival and our resiliency is so powerful! It sounds as though the two of you have been through a lot.
      I will add Mary to my prayer list as I truly pray that she begins to feel better and that these new "symptoms" are a symptom of her just doing too much!
      How amazing to have eight children; this must be very scary for them.
      I wish you and your family well and would love to hear how you are all coping.

      Blessings,
      Michele

      Delete
  68. Hi my name is Stephanie. I am 30. I am having symptoms. I am a cancer patient.I had Hodgkin lymphoma in 2006.It has been 7years in remission. But for the past year.I have been having infections a lot. I have been having episodes that seems like a stroke. Now for the past couple of months I have been having night sweats and extreme fatigue. And extreme muscle weakness. Don't know what to think. I do know that the long term side effects of the chemotherapy I took was leukemia. I need some options before I go to the doctor. Thank you.

    ReplyDelete
    Replies
    1. Hi Stephanie,

      I think that you should definitely get a blood test in order to see determine your overall health. That should give you a starting point to getting you back on track.
      If you have developed some type of leukemia, the faster that you begin treatment, the quicker you will be on the road to recovery.

      Please keep me posted!

      Blessings,
      Michele

      Delete
  69. I also been having symptoms dizziness,shortness of breath blurred vision headaches 5 months now and hard time sleeping and also pale face ,I call my doctor because they did a complete blood count and he showed me everything was normal is there anyone who can be wrong and not showing in the blood work? Please help

    ReplyDelete
    Replies
    1. Erika,

      Listen to your body! Lab results can be inaccurate and should be repeated if you have not improved. If they are still "normal" then you doctor should investigate other areas of your health to try and pinpoint the origin of your symptoms.

      Blessings,
      Michele

      Delete