11 replies to this topic

[dolphin]

hi all,

my mom's pcr test results came out today and they are the same as the last results in may. its been a year since she started gleevac and there does nt seem to be an improvement. its quite scary ..

tthe results r as she was diagnosed in september 2010 and the medicines started in oct 2010

bcr abl translocation ( january 2011 ) : 17 percent out of range

bcr abl translocation ( may 2011) : 12 percent out of range

bcr abl translocatio ( oct 2011) : 12 percent out of range ( close to one log reduction)

trey, please tell what do we do now ? this is nt looking too good .. i am really concerned and am lookinhg for answers .

thank you and god bless

surabhi

[scuba]

Switch to a new drug (Sprycel, Tasigna).

[PhilB]

Given that the PCR isn't moving, I would be pushing for either a BMA or a peripheral blood FISH test to get a better look at what kind of cytological response your mom has.  The traditional target for 12 months is <35% PH+ cells by cytology or FISH and your mom may well have achieved that - but without the tests there's no way to tell.  Once you know more about what's going on with the cells she'll be better placed to look at either sticking with the G or trying to get access to another drug.

If you haven't already, I'd recommend joining the Asian CML Support Group which should be a good source of information on the availability of affordable second generation drugs in India.

Best wishes

Phil

[valiantchong]

Agreed with Phil said. I think should look at the cytogenetics test and also differentiation for the blast cells %. Dont worry as there are other TKI drugs like Sprycell and Tasigna, Ariad, Busotinib and Ponatinib. If Gleevec is not effective try second generation drug....

[dolphin]

t.thanks phil for a prompt response .. if the fish test result is less than 35 percent with this pcr, is that considered normal progress ? my biggest concern is the cost of these second generation drugs and they are not even covered in insurance here and also what if these drugs also not work . its quite scary . will be going to the onc on saturday and will discuss abt getting a fish test . do these second gen drugs work for ppl who have failed g . can we say that its not working in her case just yet.

i am sorry have so many questions and dont want to bother  her with my fears.

i am so grateful for this forum !

surabhi

[Trey]

She is responding somewhat slowly by PCR, but the next PCR will show the real trend.  There is no sign of loss of response by this result.  I would prefer to use FISH for monitoring until it shows negative (CCyR), which is roughly equivalent to a 2 log reduction by PCR.

Since the second line drugs are not affordable for her, increasing the Gleevec dosage to 600mg per day would be an option.  Some people just need more drug than others.  I would try that in your situation.

[valiantchong]

If you need to stick to Gleevec due to avaibility then increase drug dosage may help as Trey mentioned. Well, I think you will need to closely monitor the FISH, if PCR avaible one can use PCR. Wondering what is her cytogenetic test results, as Gleevec will work best for b2a2 or b3a2 type of BCR-ABL translocation. The blast cells differentiation is also important to see if the sickness did progress.. Hope the condition will improve soon...

[dolphin]

thanks trey and everyone for your responses. trey you mentioned that this result doesnt mean that she is not responding to gleevac, it only means the response is slow .. this is somewhat reassuring because i have been feeling quite disheartened ever since d result has been out .. so is it possible for people with a slow reponse to lead a normal life for a long time and do patients who respond slowly to gleevac respond well to the second generation drugs. she has been on 500 mg since april 2011 . before that she was on 400 mg . i will definitely try to arrrange for these second generation drugs in india . i have read that the first two years of diagnosis are very crucial to judge the direction in which the disease is going . and her first year report doesnt seem so good and thats why i am really disappointed . r there people on this forum who would have had a slow reponse with g and still are iving with the disease for a long time .. i guess i am asking is there still hope .. sorry for bombardiung u all with so many questions .. hope u ll be kind enough to understand ..thanks a lot and god bless !!

surabhi

[Trey]

Long term studies have shown that as long as the patient does not become resistant to Gleevec, then a slow response over a long period of time is OK.  You only need to be concerned if she loses response to Gleevec.

[CallMeLucky]

I've read of a number of people who have not had the great response that most people look for, but still carry on without disease progression.  Obviously a better response is preferrable as it reduces the risk of progression, but it is also possible for disease to not progress and stay under control, even with a sub-optimal response.  So I say there is certainly hope until something definitive says otherwise. 

[LivingWellWithCML]

Agreed.  And when we say "lose response", we mean an increasing PCR and/or increasing FISH?  Is a slowly increasing PCR + negative-FISH considered a loss of response?

[valiantchong]

This is what I think. When you reach CCR, FIsh is no longer sensitive enough, hence PCR is the correct tools to use to monitor the progress. Hence if one CML progess, Fish will eventually turn to positive later, after PCR increases high enough. I think PCR is the tool to catch early progression when Fish is not sensitve enough. Hence PCR increases over 2 log is an early sign of progression. Which need treatment asap.