3 replies to this topic

[lrock]

I've been reading posts since my dx in January.  I have posted before, just right after my dx.  My oncologist never did a BMB, only did the dx by blood work.  To start with, I saw him weekly.  Once we got through about 2 months, I started going every 3 months.  I had blood work in May and when compared to January's blood work it looks like my meds are working.  I go back August 7th for the next visit, I assume he'll run the test again.  I'm still confused about the log reduction, how to calculate things and if the doctor really knows what he's dealing with.  I think there is one other person in the practice that has CML and he's on Sprycel. I'm on Tasigna.  I can't complain about the drug, I have basically no side effects once I got through a couple of months of fatigue.  I'm the only person in their practice on Tasigna.  I live in a small town in South Carolina, so there aren't many options for me as far as oncologists.  It does worry me that I know so little and compared to others, really haven't gone through much of the same medical processes - should I be?   I have other medical issues as well, diabetes and thyroid, high blood pressure and cholesterol.  I'm starting to bruise very easily, and they stay around quite a long time.  I'm wondering if I'm just being hypersenstitive?   My sister told me the other day that "the cancer is all I've become".  I'm trying to live as normally as possible, and trying to get my ducks in a row before my next visit.  Any suggestions are welcome.  thanks for listening!

[TeddyB]

Just wanted to tell you i bruise very easy as well these days, and it takes forever for the bruises to heal.

I have found that applying an over the counter Hydrocortisone cream on the bruises that wont go away has helped a lot. (I had one bruise on my face for about 5 weeks, after applying the cream it almost went away over night)

As for your other questions, i am fairly new here so i will leave that to the more experienced people to answer.

Good luck

[Trey]

If you don't remember having a big needle pushed into the rear of the hip or onto the sternum, you did not have a BMB.  If not, that is poor procedure.  CML can be diagnosed using either FISH or PCR, but the BMB is the proper procedure since it also shows if there are any high risk factors. 

So ask your Onc:

1)  Why wasn't a BMB done at diagnosis?  What test showed that I have the Philadelphia Chromosome (CML)?  (should answer FISH or PCR)

2) What tests were done at the 3 month point, and what did they show? (FISH or PCR)

    a) If FISH, what was the drop in percentage?

    If PCR, what was the decrease and log reduction? 

3) Will a BMB be done at any time in the future?

4) How would you assess my response to drug therapy and progress so far?

[CallMeLucky]

While it may be a bit unsettling to feel like your doctor is not an expert with your disease, the good news is that the drug is doing all the heavy lifting.  Most CML patients do well on treatment and do not require the services of a specialist.  If the drug does what it is supposed to then it will be fine.  If by change you start to run into some issues with side effects or if it seems like the response is not good enough, you can always make a trip to see a specialist at one of the large cancer centers.

As far as your sister goes, it is perfectly normal to feel like the cancer is your whole world in the beginning.  Eventually that will settle down as you get used to the fact you have this disease.  It is very hard for people to handle when someone else has cancer, especially a chronic disease like ours.  Most people do not have the patience to deal with a long term illness, we learn to deal with it because we have to.  I've gotten to the point where I don't talk to people too much about it.  My mom a bit because she is the one who is most concerned and she is a nurse so she understands the medical side.  I talk to my wife occasionally about it, although for the most part I try not to.  If I need to talk about CML I come here - its the only place I know people who really understand.