hospitalized for treatment in the beginning, I have been on varying doses of Sprycel. My PCR has remained at a manageable level throughout these past five years, even reaching a undetectable state, twice.
Tips for Hospital Stay
I have suffered from a revolving list of side effects, some minor, others more extreme. They seem to come and go, with my quality of life being mostly satisfactory, for someone that lives with chronic cancer.
One of the most annoying, and recurring, side effect has been pleural effusion; this is a build up of fluid in the sac around your lungs. Most often this occurs when my oncologist and I decide to increase my Sprycel, in order to achieve a more desirable PCR. It has been a balancing act for five years.
During the past six months, I have been on 140 mg of Sprycel, six days a week; certain that I would develop pleural effusion. After seeing my oncologist, I did not disappoint; pleural effusion in both lungs, which results in a Sprycel vacation. Not necessarily a bad thing! Still waiting for my PCR result which will be all telling; will the increase in Sprycel have been worth it?
Flip over to my "other" medical history; borderline serous ovarian tumors, removed ten years ago. I follow up once a year with a gynecological oncologist. Part of my routine exam consists of a blood test called a CA 125. Apparently a reading below 35 is considered "normal" My last two tests (even though I was never informed that two years ago it was 202, and elevated) were both elevated. 2014 result 202, 2015 result 121.
While it would appear that a drop in the CA 125 from one year to the next, is a good thing; it is still above the normal range. This led to a CT scan to rule out any tumors in my abdomen as abnormal cells are still there, following my complete hysterectomy, ten years ago, due to the ovarian tumors.
Fortunately there were no abdominal tumors, and as expected, my pleural effusions became the main focus and concern. The effusions themselves are not of major concern as they are known side effects of Sprycel; and something that I deal with once or twice a year. But the fact that I also have a "small" 3-5mm spiculated nodule on my right lung has caused concern for the nodule, as well as the fluid. (due to the ovarian tumors)
Sooooo, my most awesome internal medicine physician and I decided that it would be beneficial to drain any remaining fluid, after my Sprycel break, and have it analyzed, hopefully ruling out abnormal cells, which would likely be from the ovarian tumors.
The spiculated nodule and CT films will be reviewed by a pulmonologist committee next week.
In the meantime, I had a procedure called a thoracentesis. Of course, I was freaked out; both for the procedure and the results! I had one bone marrow biopsy without sedation and that was excruciating, which led me to be wary of this procedure, too.
Upon arriving for my appointment, I was indeed informed that I was correct in my assumption of the basics of the procedure.
What I can tell you, however, is that it truly was not nearly, as uncomfortable as I had anticipated. The first thing they did was an ultrasound to asses which lung they would drain. Surprisingly enough it was my left lung; the one that had the least fluid, two weeks prior on the CT scan; the right lung was nearly empty of any excess fluid.
After answering every single question that I had, to my satisfaction, they began the procedure. I was sitting on a table, leaning onto a pillow that was elevated with a ladder!
First they determine, through ultrasound where they will enter your chest; and they mark it. Then the used some sort of C02 cartridge to numb the skin; feels a bit like being snapped with a rubber band; numbness quickly spreads to the area.
Then you feel a bit of a poke as the needle starts to go between your ribs; at this point they inject more lidocaine. It hurts a bit but does not last very long, then they proceed to enter the pleural sac with a needle; once through the sac they place a catheter into the area to be drained and remove the needle. (this was a big relief to me)
Throughout the procedure, the technician kept me informed of everything he was doing. At one point I asked if the worse part of the procedure was over and he said "Yes" we are almost done. I could hardly believe it.
After he pulled the catheter out, I had a major coughing fit! He said that it was normal, as the lung refilled so quickly. I was quite surprised at how much better I could breath; Duh!
I asked him about the color of the fluid and what range of colors were "typical" and how much fluid he removed; 500 plus ml. It was shocking to see the amount of fluid in the canister, along with two syringes of 50 ml each. We all did a swirl of good luck over them, before he sent them to the lab.
I have to say, that I walked out or there with a smile on my face!
All in all, the procedure was a piece of cake; as with all medical procedures, make certain that you are entirely comfortable with what is being done to you. Understand the process, the risks and the benefits.
I went as far as to tell the scheduler that I wished to speak to the head of the department; I told them that I wanted the best technician to perform the thorasentesis. I told them that I wanted the one who had punctured the fewest lungs and caused the least infections, and that I knew they had statistics on that sort of thing!
Of course, I was very nice about it! And she even laughed; I told her to schedule me with the person she would send her child to.
Remember to always stand up for yourself and express your fears and insist that your questions are answered.
Here is to normal results!
Thanks for reading.
Friday, February 5, 2016
Friday, January 29, 2016
On occasion, I roll in and roll out of these appointments unscathed; everything status quo; other times there are hitches. The visit with my CML oncologist went pretty much as I anticipated; moderate pleural effusion in both lungs.
I say that I expected this because for the past six months I have been taking 140mg of Sprycel, six days a week, as opposed to five days a week, to try and get my PCR back to a ".0something" number. Three months ago it was .074, the best PCR I have had in eighteen months.
My body tolerates 140mg five days a week quite well, but every once in a while, I want better numbers and go for the gusto, upping my dose! This typically results in a great PCR, but also pleural effusion! Guess I can't have the whole ball of wax!
My next appointment was to the gynecological oncologist; this visit has been so routine for 10 years, that I never expect there to be a hitch; but this time: FOOLED YA!!
My CA125, a blood test that is used by gynecologist as a tumor indicator, was elevated. I guess up to 33 is "normal" and mine was 102. Not extremely elevated, but given my history, a CT scan was ordered "just to be safe". Grrrrrrrrrr....
As luck would have it, apparently I have 4-5 mm diameter spiculated nodule without calcification and a 3 mm diameter calcified nodule of the right middle lobe. What ever the heck that means! Hopefully NOT lung cancer!
Having to keep on top of CML is difficult enough, I cannot even imagine dealing with another serious illness!
I am trying not to lose too much sleep, and trying not to give in to the what ifs', but I have to say "what the @$#!? " has come out of my mouth more than one occasion!
I often wonder whether or not I am just plain dense, and therefore have many lessons still to be learned, many challenges to overcome, or if I am just an integral part of someone elses' learning process and journey. Either way, I certainly wish that I could catch a break!
Looks as if 2016 is starting off with a BANG!!
Blessings to all; please keep me in your thoughts and prayers if you have room, as I see many more tragic journey's than my own......
Monday, November 16, 2015
Throughout the battle of her second bone marrow transplant we cheered her on; prayed for her, encouraged her and silently willed CML, and the graft vs host disease to disappear. We believed that she would win the battle, yet feared the battle was just too much; too much for her to overcome.
In the end, Lauren succumbed to this ugly disease; her family said that she gained her wings peacefully and is no longer in pain. For this we are all grateful, despite the fact that we are all a bit lost, a bit angry and yes, even a bit scared.
Every time some one dies from CML, or complications prior to or following, a bone marrow transplant, it is only natural for those of us living with this disease to have questions. We all want to know the details; what happened and what went wrong? How is it possible, when we have the "good" cancer, to die?
We also need to realize that every one's case of CML is different; some cases of CML are drug resistant; some may have mutations in their disease, and others may be unable to tolerate the TKI's, for one reason or another.
The most important aspects which we are able to control, are excellent medical care and diligent compliance of treatment. I personally have witnessed the loss of life due to poor medical care; to me, this is inexcusable.
I know that when you are first diagnosed, it is like being hit by a train; your mind is reeling and you do not know where to turn, what to do or who to trust. You will likely read conflicting information and receive tons of "advice" from friends and family.
So, what are you able to do; what is in your control?
Education and Choice:
It is your responsibility to choose your oncologist wisely, and to make sure that you not only understand what tests are used to monitor CML, but what they mean, as well.
My oncologist states that the number one reason for CML progression is noncompliance in treatment, especially in his younger patients. He believes that his younger patients do not understand the severity of this disease and that they believe their medications make them feel worse than the CML, so they skip doses or even stop taking their medication all together; often it is too late to reverse the damage and they find themselves facing Blast Crisis and a bone marrow transplant.
So on the heels of yet another loss to CML, stop asking yourself "Will I be next?" and begin asking yourself, "Am I doing everything I can, to the best of my ability, to manage my illness?"
Remember those who have gone before us, and live each and every day with purpose.
Fly high and fly Free, Lauren Wollenberg! You will be remembered, you will be missed and the world, and my life, is richer for having had you in it!
Thank you for sharing your journey, your humor and your inspirations.