I started FCR for cll earlier this year as my WBC was just rising so fast. Im only 45 so it was inevitable that i would need treatment at some point.Because i had lots of little masses my Onc thought it best to start a little early so they didnt become bulky. Also my submalinder glands were getting quite large and i couldnt hear as they were pressing on the ears.
After the first round my blood count was back to normal and the glands had drastically shrunk. Since then all my tests have been in a normal range and none of my masses are visible. Im having a scan now as ive done session 3 and the plan is if the scan shows there is only residual mass then we do 1 more session and stop at 4. However the Onc has said this would be MY choice to make as all the data comes from 6 rounds. But with my bloods being normal from the first treatment he doesnt want me to have chemo for the sake of it and increase my risk of secondary cancer, but then again he has warned me that it might not have killed the cancer in the bonemarrow. He has offered a bonemarrow biopsy.
I dont want to stop too early and be back in chemo before i know it but on the other hand i know at my age this wont be my only chemo so i dont want to risk having more than i need.
Thoughts guys?
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grizzlebear
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I am not a doctor, but might suggest to go for the bone marrow biopsy and look for minimum residual disease. There are tests for residual disease and you could google this or go through the MRD search pages on CLLCanada.ca or other CLL websites.
This is such a tough call Grizzlebear and I can't help thinking it's one you shouldn't have to be making. It's a clinical decision and I can only say what I'd do in your situation as I wouldn't presume to offer advice at this critical time in your treatment.
I rather think I'd be asking for a second opinion. You mention an oncologist and my first reaction was that I'd be wanting the opinion of a specialist in CLL. But perhaps he is?
Surely you can only be assisted to make decisions about continuing if there's enough data on which to make it? I'd be concerned that it was 'my choice' in that situation.
It's a huge burden to place on you without full results in.
I never thought I'd be saying I'd elect for a bone marrow biopsy but in this situation, if the treatment was to cease after 4 sessions, it's the least I'd expect to ascertain what if any level of disease was remaining.
I'm all for total partnership in treatment but in this situation I'd be looking for more definite clinical guidance from your specialist and team. Do you feel a second opinion might help?
I'd be interested in what others think as I'm pre-treatment and would be concerned about finding myself with your dilemma when the time comes. Wishing you all the best though and a totally successful outcome.
My onc is 1 of the uk's leading cll proffesors which is why i sort of feel like a guinea pig to see the difference shortening treatment would make.I am going to ask for the biopsy for sure
I think I'd discuss the fears you have with your oncologist, as you say he is a leading expert in CLL.
He has no doubt a duty of care responsibility to you, and hopefully will find the time to discuss this with you, to set your mind at rest, and explain why he has given you this advice. I would hesitate to give an opinion when you have the expert with the best knowledge to discuss with.
Hi grizzlebear, I would ask for a second opinion. I would not feel confident making such a decision. Or just say that you don't feel confident making such a decision and what does he or she recommend. We are not doctors. The difficulty comes if you feel it would compromise your relationship with the oncologist. There are stories on here of people who've swapped.
Just thought i would update my post as very few stories are followed up to the conclusion!
I have just completed round 4 chemo and i have had a CT scan and Bone marrow Biopsy to see where we stand. If we are above MRD we push on, if we have reached it then we leave a 6 week treatment gap and do 1 more round in the hope of being MRD neg. If we are already MRD neg then i think i will burst into tears (as i book the biggest party ever).
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