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complete molecular remission

I was told a month ago that I am in complete molecular remission, that there was no trace of the philadelphia chromosome in me.
I was so overjoyed that I shared this news with everyone I knew, family and friends. It was a time for celebration. Now everyone says how great it is knowing that my cancer has GONE and how I must feel so much better. I now feel a bit of a fraud, has it really gone? or is it still there but too small to trace? I don't have the heart to tell everyone "well actually it hasn't gone, it's still there" after telling them I'm in complete remission. Even I myself kinda believed it had gone for a little while. What can I now tell everyone again without worrying them all???

Hi,
I always use the term Complete Molecular Response (to the drug). You're in a great place and it should be celebrated.
As for being "cured" - currently for people in the STIM trials (Stop Taking Imatinib) you need to be CMR for at least 2 years before you can participate. Some of these folk have been able to stay off their TKI and for others in the trial the CML has returned.

Hi Gerry, Yes with hindsight I would have composed myself and told everyone that too. But I was so overjoyed at my news that I think I just got swept up in the excitement. When everyone said how great it was that my cancer had gone, I didnt correct them as I FELT IN MYSELF THAT IT HAD ALSO GONE (EVEN THOUGH I KNEW THAT WASNT NECESSARILY THE CASE). Now everyone thinks "My Cancer has gone" I dont know what to tell everyone that I still have it now??. I feel like I have led them on and the good news wasn't so good after all. How can I simply explain to them in laymans terms, without them thinking I lied or that I'm "wishing cancer back on myself for attention". sorry if this sounds weird and long winded, I'm just confused now. Everyone thinks I'm cured basically. and I havnt the heart to tell them different. One particular friend has compared my illness to her mum's who had breast cancer and still had to take meds for 5 years after. :/

I'm sure you are overjoyed reaching CMR. That's the place we all aim to get to in time so well done and enjoy the feeling. Which TKI are you taking?
If I reach this position I shall just tell family and friends that the drug has done its job but that I have to keep taking it for now to stop it coming back. After all, it seems to be the medication which makes us feel below par some/most of the time rather than the CML, so sadly the side effects will presumably continue till the doctors feel it is safe to stop taking it - under very close monitoring.

Best wishes- it's a lift when CMLers post that they have reached CMR, so thanks for that,
Chrissie

Hi Chrissie, thank you.
I have been taking 400mg daily of Imatinib (Gleevec) and it took me 15 months to get here. I have told my friends and family the drug has done its job and that I have to keep taking it so it don't come back. However, they think this means the CML has now gone, which I hadn't corrected. My friend said her mum has been taking cancer meds after she had breast cancer 20 years and still has to take them. So I wonder what the difference is to CML patients?

The news is great - don't beat up on yourself. Even when I tell people it is a "response" to the drug, it is still difficult for them to get their head around the idea of a drug keeping it in check. Just explain it to your family and friends, they only want the best for you.

Many thanks Gerry, hope you are well too.