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Still PCR Undetectable

Just returned from my monthly appointment with HH. Still undetectable since March. Like Patricia and Basil, I am a little disappointed that the weight gain does not come off as easy as it went on. But I can cope with that and will get around to doing something about it. I have now discovered that since getting a tan in recent weeks, the Glivec has destroyed pigmentation in my cheeks and I have permanent "Aunt Sallys". I have had rosy cheeks for about a year, but put it down to hormones or similar. It is only when my face started to tan that I realised that the pink patches on my face were because of lack of pigmentation. I am not a sun fanatic but in these recent hot spells it has been difficult to avoid the sun all the time. Back to the sun block.

In answer to Zavie's question about regime and follow ups.
I came off the Glivec on 15th March with the full support of HH, on condition that I have monthly PCRs for at least 6 months. If the PCR rises 1 log or similar I will restart therapy immediately, although possibly on one of the newer drugs (That will be down to HH), if there is a slight glitch then HH will wait until the next month to see if it repeats, in which case I will restart therapy. After 6 months, according to the Australian trials, if I am still PCR negative, I am not likely to relapse and the monthly intervals of testing at HH will be lengthened. I doubt I will ever be free of PCR testing, but if I can make it to September I stand a pretty good chance of keeping free of CML. I doubt anybody will ever say people are cured because that is not what Glivec was designed for but being undetectable without therapy sounds pretty good.
People say it was a brave decision, and it is gratifying now to see Patricia and Basil have agreed with me. If anything my decision was selfish in many ways as I have completely disregarded my family's opinions, but I feel so well and they are so supportive now that for me it was the right one.
Good luck Patricia and Basil, we have a long hill to climb, but somebody had to set off first and God willing we can get there.

Hi Des,
Great news and do hope to see the PCRU's coming.
You have a lot of CMLers behind you. Do keep
the forum posted.
take care.
daniel

Des

Thanks for sharing your info and it is so educational for all of us.

I did not realise that rosy cheeks meant lack of pigmentation
- my skin has becoming quite pale with rosy cheeks

My thoughts are with you Thanks for sharing

Sue H
(Aussie)

Des well done on your negative result, im so delighted for you. Like you I've a tan for the first summer since starting Glivec I cant believe the difference in my skin colour, the white circles around my eyes have even disappeared!!!!! The weight isn't falling off me the way i had hoped, im still the same but at least I havent gained any.

Zavie - my regime is more or less the same as Des, except my PCR's will be checked every 6 weeks for the first 6 months. I stopped taking Glivec on May 10th, so I havent had any PCR results back yet, should know the results of the first glivec free one on August 4th which is my next appointment with my consultant.

I started off on 600mg daily in August 2003 and was allowed reduce my dose to 400mg in November 2007. The decision to come of the medication was not made lightly, i have the full support of my consultant and family. I feel that even if my CML returns at least I've will have had a few months of living a normal life, because lets face it, having to take Glivec isn't easy. Since I stopped I've had a few hicups the last one was getting a virus, but im over that now and I feel great. I have an interest in life and i feel like doing things which i hadnt felt like doing in a long time.