Hi All,
My 16 year old son Jack was diagnosed 5 years ago and has now been PCRU for 2 years on Glivec.
Until this week he has visited hospital 6 weekly, with full blood counts every visit and PCR every 12th week.
From this week he is now going to 12 weekly appointments. Although I know this is a normal pattern of visits and Jack is keen to attend less frequently it is slightly unnerving not to attend every 6 weeks.
Trish.
Hi Trish,
I started out with blood tests every 4 weeks. After a few months that changed to every 12 weeks and then 16 weeks. As of this year i now go every 6 months with a bone marrow aspiration once a year. I managed to get out of last years one as my results were so good, but am due one in October. I always wanted to attend less as i felt i was always at the hospital. It was great to get out of work for a few hours so that was the upside to it. I'm happy to be going just twice a year now, but the other day i thought about it so understand the trepidation. Anything can change within a matter of weeks, but we can't worry about such things. With time i am sure you'll both relax that little bit more as the results continually come back so great.
Andy
x
Hi Both
I'm just coming up to my 3rd CML anniversary. At first, like everyone, I was seen frequently. After about 6 months this went to every 3 months and now it is every 4. My translocation is/was unusual so they seem to like to keep an eye on me, or at least take regular samples of my blood....
Still, I'd rather have a frequent PCR than any more BMAs. I've only had 2 - at diagnosis and 12 months post - and my consultant (at the Hammersmith) sees no need for any more absent a change in my PCR. Since that's been stable at "zero" for 2 1/2 years neither do I! And I would argue strongly if any other consultant suggested to me that I should have another because there was still a routine need to do these. The impression I have is that the 12 month routine BMA, so long as your results are good enough, is no longer regarded as necessary, and that the PCR test will pick anything untoward up very early.
Richard
Hey Richard,
Great news on the three year anniversary. I had mine back in March.
I remember the first BMA as clear as day. They said "It hurts just a little bit." What liars! After the second one someone told me about liquid morphine. I've had it twice now. It took away about 90% of the discomfort and left me on a nice high for a couple of hours. Granted i did walk out of hospital like i'd come out of a pub after 10 pints but a small price to pay.
At my last checkup in March i asked why some hospitals do frequent BMA's, but others don't. He said it comes down to professional opinion and cost. Apparently the total cost including the testing at Hammersmith comes to around £1100. I hate the BMA with a passion, but also understand they need to be done for continued practice by new doctors.
I'm sure my consultant and I will have the "Yes?" and "No!" conversation come October!
How do you plan to celebrate the 3yr mark? I had a mini booze up.
Hi Andy
My two BMAs were pretty hard work for me and the doctors involved: I have hard bones apparently, and the whole thing was very unpleasant. And with the second test two years ago, when I was "persuaded" not to have sedation (mistake!), the cytogenics didn't work properly. I was told that was a good sign, and it was 100% Ph negative by FISH. So, rather than go through the trauma again for a test that may not produce anything very useful by way of results, and having been told that when things are good PCR is enough, there is no way I would agree to another without a pressing reason why, medically, it was necessary.
Not sure how I will celebrate to be honest - but I certainly feel a whole lot better about life and the future than I did 3 years ago.... Probably a decent bottle of wine with my wife - anything much more than that these days seems to give me a three day hangover...
Dear Trish,
I absolutely understand why you would feel nervous that Jack's appointment schedule is changing... I would feel the same if my daughter were the one with CML. However, given that you say Jack has a very stable complete molecular response (PCRU) over 2 years, I think you can allow yourself (and him) to relax a little.
People with good responses do not really need such frequent monitoring of their blood counts... I assume he was monitored so closely because he was only 13 at diagnosis?
His pcr will still be taken at 12 weeks/3 months, so the only change would be that he will not have a peripheral blood count so often.
Any change in his disease would first be detected on the molecular level by pcr.... it would be very unlikely that his blood cell count would show a change first because his disease is on such a low molecular level.... and has been for so long.
I am sure you will get used to less frequent visits sooner than you think. I got used to my 6 monthly regime quite quickly--and although I missed the attention at first, I now love not needing it ;o)
Best wishes,
Sandy
