I've got my appointment this morning to see if I need my 5th FCR. I must admit to feeling nervous and anxious because why shouldn't I have my 5th and 6th sessions, it's what I signed up for on the trial, it might make the difference between a long and a short remission! Then I tell myself to pull myself together, why would I want it if I don't need it and surely my consultant knows best. But does she? Is it just her opinion or have I been discussed at a meeting and it's been agreed there is no benefit carrying on because I've had a good response, job done! I'm confused and worried that the wrong decision will be made. Also I had a CT scan which I will get the results for today, but I haven't had a bone marrow aspiration so don't I need one of those as well?
Sorry for whinging.
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sallyplest
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I had the same question after 4th and 5th round, as i was MRD neg already and CR! But Prof recommended to go for 6 rounds to eliminate as much hidden cells as possible.
I'm having all 6 sessions, apparently I need them so decision made. It was meant to be obviously.
Good luck.
As we're all different, it's something only you can decide.
Personally tho', I wish I'd stopped at #4 last time as I was on top of the world and blood counts were perfect. It was FCR #5 that "got" me and I'd only forged ahead due to the promise of extended remission times.
Never recovered from #5 and could not take #6 as I thought it would kill me! (yes, drama queen)
Hi gwendog. What do you mean by 'never recovered'? I have just started FR (no C for me). And I have felt from the beginning that I might opt to limit my treatment to 4 cycles because of the long-term toxicities of these drugs that persist post-treatment - sometimes permanently. Such as never regaining a normal CBC, or permanent immuno-suppression, or second/different cancer later. What with the spate of new targeted drugs coming on the market, with more and better on way, I am less concerned about my length of remission than the toxicity of treatment.
On each of the 4 prior FCR treatments, I had a week feeling shitty, a week feeling like I could do stuff - but couldn't - and a week being able to do stuff. In fact, after #4 I felt brilliant, even walking UP the ferry ramp at low tide and keeping ahead of some schoolchildren, a really big deal.
Then came #5
I was trying to take my 12 Cylo or Fluc' pills when my throat closed up and my lips started to swell. My hands balloomed in size, my eyes almost swollen shut. This is phase 1 of anaphlicatic shock (spello).
The first week was normal, walking feeling like I was waist deep in mud and very tiring. As was the 2nd and 3rd week.
I'm now at week 65, still with the same problems. In addition to calf muscles in perma-cramp.
Go very drunk last weekend following my blood-test which showed the requirement for the next round of FCR had eased slightly as the nasty cells declined by 4.5%. As you can imagine, I'm not terribly enthusiastic about the coming round of FCR though I do intend throw in the towel if the cell numbers are sane and I'm feeling okay.
My secret fear is of ending up in a wheelchair if I try to "man up" and go the fool 6 treatments. (not a spello)
Do remember, this is just ME and empirical proof of nothing really; other than being a little challenged on the humour side, when I think of any future FCR regime.
Sounds like an awful ordeal! Thanks for the details. It never occurred to me that a person might have an allergic reaction on Cycle 5, but not earlier. Gives me somethign to think about and be on lookout for as I progress through treatment. Certainly sounds like your body was saying "No more!" I really hope your situation improves.
Obviously, I'm unique - like each of us - and probably experienced something unusual. Listening to consultants over the years, it certainly does seem quite a few FCR victims display spectacular "refusal" symptoms, if their body decides enough is more than enough.
Doubt the damage to my nervous system will ever sort itself and thankfully, as a small fat bloke who sits at a computer all day, it doesn't present a great problem. Aside from skiing no more, hills no more, and logging no more. Can still swing an axe tho'!
Trust me, when your body says "no more" you will know. Like all of us, I resolved to take all six treatments and when I started #5, nothing had changed.
It was Day2 of #5 when alarm bells started ringing - started to feel very wrong - and on Day3, when trying to take my 12 Cyclo' pills my body went into utter revolt.
I phoned the unit to tell them what had occurred and the advice was to stop and don't take the Fluca' pills.
The following week, I met my consultant and suggested I try the C & F again but this time under medical supervision as I was deeply unhappy at going into shock. He gave me the sort of look I give one of my dogs, when it's planning to do something really stupid.
In other words, despite me being flippant, if you cannot complete the full course, you won't. And all the willpower in the world will not help. It's worse than trying to get a Scot to eat greens. <grin>
It is a dilemma. What's for the best? Even medics disagree. After each cycle I asked when I would finish after being in remission after cycle 2. Consultant one said to have 6 cycles to make sure the lymphocytes hiding in many places are totally zapped. Consultant two (whilst one was on holiday) said stop because of achieving remission early and the toxicity of the chemo. He stopped me after cycle 5.
I had no say in their decision. Hope you get what you want but sometimes we just have to trust.
I am joining this conversation a little late I know. But I wish I had stopped after FCR 4. Obviously number 5 was bad for me. I did not have no. 6 but just Rituximab without the F&C. Now my platelets are very low and last week I had to have the second blood transfusion because my Hb is not recovering either. Neuts are 1.4 though but I am told IgM is borderline. I worried about not having all 6 because I had heavy bone marrow infiltration, but glad I did not bombard myself with the full load of FCR 6. I have a BMB on 29th August so looking forward to the results of that - kind of.
How long ago did you finish treatment, Holly? I have recently started FR treatment and am concerned about how long the post-treatment effects of these drugs persist. Have been reading quite a bit about that. My Neuts and Hgb were severely low going in to treatment. Am worried if I do full 6 cycles, those things may never recover.
I finished the 5th FCR Cycle during the first week of June this year. Then I had 4 delays while they decided if I should have the 6th. The delays were because my platelets were less than 75 and also Hb was low at 75. It was then decided that I would go ahead and just have the Rituximab and not the F&C tablets.
Since then, I have had to have two blood transfusions to get the Hb up again and am hoping I won't need any more, but am not holding my breath. I suggest you do have the conversation with your consultant about the benefits of having all 6 against the risk of bone marrow not recovering well.
My lymphocytes have been wiped out and are still 0.1, ironically now too low as they should be between 4-11 for immunity.
Hope you get on OK at this difficult and complicated time! Holly
Thank you for the info, Holly. And good luck to you in recovering your lymphocytes! I have read that Fludarabine can suppress lymphocyte production (T calls as well as B cells but not NK cells) for up to 2 years post-treatment. Perhaps that is the extreme end of things. But it is a big concern of mine. I am 2 weeks into my FR treatment.
I have been considering trying the shiitake mushroom-based supplement Noxylane4 post-treatment. It purportedly boosts NK cell activity and increases production of B cells, T cells and interferon. Quackwatch says the claims about its predecessor (MGN-3) by same company have not been scientifically proven through controlled studies, etc. (quackwatch.org/01QuackeryRe.... But that doesn't mean the product lacks the abilities it claims to have. I am not big on supplements. Just another kind of pill/chemical intervention. But this one intrigues me for immune-recovery post-treatment.
True. I've been thinking about all that. Immune system will be hammered post-treatment. But does building it back up also rebuild the CLL? I wonder the same thing with castor oil packs, since they purportedly increase lymphocytes, including B cells. Yet a number of forum members including Brian Koffman, use them. hard to sort out what might help and what might hurt...
Given CLL is still considered incurable, there are inevitably a few CLL cells still present after treatment. ..
I've never heard of castor oil stimulating CLL cells and a quick internet search only turned up the use of castor oil packs for reducing node discomfort. Do you have any references?
How do I post a PDF to the forums? I have a PDF of an article on a proper study of this, published in Journal of Naturopathic Medicine: "Immunomodulation Through Castor Oil Packs" by Harvey Grady, 1998, Journal of Naturopathic Medicine, Vol. 7, No. 1.
I have found frequent reference on non-scientific sites such as Mercola to Castor Oil Packs increasing lymphocyte production. This is the reason I myself have not started using them yet although others here are. Do we want to increase lymphocyte production when that is where our cancer is?
I've looked at the paper you cited and wouldn't be at all concerned. The author hasn't shown a significant, let alone permanent increase in B-cells in the peripheral blood - the increase is small, temporary and primarily due to T-II lymphocytes - not B -lymphocytes and is likely due to lymphocytes being released from the spleen due to the heat of the oil packs, with perhaps more being released by the castor oil packs. As the author states regarding Figure 1, "The concomitant increase
in the number of total lymphocytes is due primarily to the T-11 cell increase. The T-ll cell count for the experimental group peaked at the third blood draw, seven hours after onset of treatment which
suggests that the immunomodulation effect builds for several hours, then declines to within normal levels 24 hours after the onset of a single two hour treatment, as shown in Figure 1." (My emphasis)
Looking at Figure 1 for the T-11 cell count changes, the mean peripheral blood T-II lymphocyte count temporarily increased to a peak of 14% above the baseline level, compared to 9% for the control group. We already know that lymphocyte counts have a diurnal cycle as shown in figure 1 of this paper: ncbi.nlm.nih.gov/pmc/articl...
I appreciate that the author used a blinded trial with castor oil for the experimental group and paraffin oil for the control group but I'm surprised at the statement "All packs had the same appearance
in terms of sight. smell, and touch.", given castor oil's distinctive aroma.
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