Got my result today, less than 0.002%. Still the same from the beginning of my Sprycel cessation. I am so relieved. Every 3 months when I wait for my result, I am so nervous. Should I be? What is the % of failing after 18 months?
FYI, I took 100mg Sprycel for 4 years. Then I got a pleural effusion, got drained and restart at 50mg. After 7months, the fluid was back and I stopped Sprycel until my lungs were clear. Meanwhile my pcr stayed stable at less than 0.002%. So I am still without meds!!!!
I did not get pain withdrawal, maybe pain in the shoulders in the morning for a week? Maybe it is because I went to 50mg for 7 months before stopping?
You are here
pcr after 18 months TFR
Hi Karinne,
0.002% is wonderful.
So you are on TFR now? Is that right?
There are some great data from the DESTINY trial in the UK as to who is likely to retain a response with TFR, and who isn't, depending on time. How long have you been on TFR?
David.
There is a correlation in which patients who respond well to sprycel as well as develop pleural effusions tend to have a much higher success rate trying cessation than those who don't. You are very likely to succeed at remaining treatment free.
Also - if one were to 'sample' the general population who are otherwise healthy, you would find PCR's around 0.01%. It probably is not necessary to eliminate every CML cell. More get created anyway (9;22 gene translocation is hard to avoid and probably very common in the population). There is something about you (and the other 50% who succeed at TFR) whereby once CML is brought under control, your immune system can take over.
Living treatment free is such a wonderful thing.
Thanks Scuba.
I do my part to stay healthy.
And per your advice, I take 5,000u of VitD3 with K2, every other day, to maintain my blood level at 83 (when I was taking it every day, my blood level was 101). And I take 4g of curcumin/bioperine. I also eat 2-3 brazil nuts in the morning.
Please continue to research new ways to improve....
Hi Karinne and Scuba,
"There is something about you (and the other 50% who succeed at TFR)" j
So people do not get the impression that 50% means 1/2 of the entire population of CML.... rather it means 50% of the percentage of patients who achieve a stable and deep molecular remission will achieve TFR, a caveat we should all be aware of.
More realistically if you take the DESTINY trial into consideration, many more people will be able to keep their molecular remission on a reduced dose of TKI therapy than will be able to achieve TFR. This is good the good message that came out of DESTINY.
I am not saying that TFR should not be the goal, but if it is possible that a majority of the global CML population can achieve some kind of dose reduction without comprising their MR the we are in a very good place.
Having said that, I celebrate all of those individuals like Karinne who have successfully achieved TFR through TKI therapy.
Sandy
Thanks Sandy to remind me how “lucky” I am to be able to try TFR because I first achieved below MMR.
Sandy - good clarification. I did mean those who are already in the DMR group and of those, 50% remain DMR and the others lose remission.
Interestingly, I did try to go off drug when my PCR was around 0.01 (sometimes < 0.01). Over nine months it slowly rose to 0.08, but in a up/down zig zag fashion. My oncologist was curious and wanted me to continue cessation to see if I would stay below 0.1%. I told him my decision to go back on drug was between low dose or visiting clinic for blood draw once a month. I chose low dose. It's not the blood draw - it's the parking.
Reduced dose is absolutely the way to go for many people. Convincing their doctors is the issue.
Hi Everyone!
in response to Changing the dosage as you get close to 0%.
I was diagnosed in July 2018, and since then i change few TKI meds, finally my platelets set for Sprycel 50 mmg. I am now at 0.718 last month 0.690 and February 0.49. February is when my doctor told me to switch alternating Spricel 70mmg and 50mmg and next thing My BCR go up!! (Scary)
i wish i could stick to 50 mmg like before, but she insist that 70 mmg is the way to go...
its worry some to see those trends? Suggestions? Is 0.718 okay? 2 years later?