My doctor has cancelled the FC in my 6th and final dose of FCR. ( I am in US so I get all IV meds and have 11q deletion/CD38+) My preliminary bloodwork done last Friday (WBC 1.5 platelets 97,000) so the CBC was repeated this Monday to check WBC ( WBC of 2.2 platelets 78,000) I received a call today from cancer center saying the final doses of FC x 3 days were being cancelled and I am done with treatment. I am very concerned about not getting the full 6 doses which would give me the best chance for remission.
I am a nurse so I understand the concern with the platelets but feel that a repeat CBC with the possibility of finishing out my 6th round would be a more responsible course than simply saying 5 rounds are good enough especially with my poor prognostic markers. I am seeing my physician on Thursday and have a call out to my CLL specialist in NY. I was wondering if anyone else had an experience like this? I certainly don't want the FC if it's not really necessary but at the same time would do it for a longer remission.
The uncertainty of CLL/SLL is really difficult at times as you all know. First the watch and wait. Then chemo which was my only option since my SLL was progressing. I have to say that the uncertainty of CLL/SLL along with this latest development and possible consequences of what might happen if the wrong choice is made regarding treatment, seems to be constantly on my mind. It feels as though there is never an end to the uncertainty with this condition. I am usually very positive in dealing with the SLL but this latest problem has thrown me for a loop!
Thanks for any insight or info you may have. I find the most reliable and up to date information on this site. And thank you all for all your constant support-you have been my lifeline for living with CLL/SLL for the past 2 yrs. Your kindness, understanding, and information on understanding and living with CLL/SLL is priceless.
Jomary
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Thanks Chris- I figured that was the only way to check but didn't know about the 3 month wait after Rituxan. Your knowledge about CLL is amazing and I appreciate knowing all the facts since it is difficult to get accurate info from local doctors. The only doctor I have found that really understands CLL in depth is my CLL specialist in NY and unfortunately that's a 1 1/2-2 hr drive so it's too far to be treated on a regular basis. Thanks again, Jomary
It is not unusual to have less than the full course of FCR either in the number of doses or the strength or make up of the doses, but I can understand your concern. (Living in the US does mean that you should have access to more options if needed in the future, but obviously you'd very much prefer this treatment to last you a long time!)
Are you able to share any more information on how quickly you responded to the FCR; how fast your nodes and perhaps your spleen shrank, or your lymphocyte count (ALC) rather than your WBC, which includes necessary neutrophils and other white blood cells? (I'm not sure how high your ALC climbed given you had more of the SLL presentation.) Most importantly, have you had any tests to assess your minimal residual disease level?
Hi Neil- I responded very quickly to treatment. I had swollen lymph nodes everywhere and within the first week of treatment, the lymph nodes in my neck and chin went from the size of plums to peas! It truly was a miracle. I had a PET scan half way through which showed my spleen was again normal and lymph nodes had greatly decreased in size wit no hypermetabolic activity noted. My ALC is 0.4 at this point and my WBC and ALC were always normal prior to treatment. My platelets and Hemoglobin, RBC were dropping along with the increasing size of spleen and lymph nodes which prompted treatment. And I will discuss with my local doctor about having a bone marrow biopsy again 3 months after my last Rituxan dose which was on Monday. It helps to have as much info as possible for my apt with my local doctor on Thurs since he is not a CLL specialist. Thank you!
That sounds very encouraging news Jomary, but nothing can beat being assessed by an expert in treating CLL. With the many choices available to you in the US of world class CLL experts, I guess you have very good and understandable reasons why that's impractical, so good on you for doing the next best thing and collecting as much information about your condition that you can, given your circumstances.
Wishing you a great BMB result and a very long remission,
You can have an MRD test on bone marrow at anytime... it is only the BLOOD test MRD you must wait for 3 months... after rituxan or any other CD20 monoclonal antibody, for that matter.
I wanted to make this clear...
MRD negative on bone marrow is the goldstand test for remission, the similar test on blood is in second place... not quite as accurate... but still a good indicator, if below 1 CLL cell in 10,000 leukocytes.
I refer you to the CLL Guidelines which explains MRD
Hi although I completed the six cycles the last three were at 75 0/0. Four years later I am still minimal residual disease negative. So I would not too concerned about stopping the last cycle. I know that sounds easy but it's the hardest thing to do. I am glad that like myself this site has been a huge support and I hope others will be able to help with their insights as well. Best wishes
As Neil says it's not unusual to not have the full six sessions.
I had a conversation last month after round 3 of FCR because I am finding numerous side effects affecting me after sailing through round one.
My consultant believes in not giving the full number if bloods etc show positive results and mine have reacted very well to the chemo despite the side effects I have suffered.
I am due for round 4 on 23 rd of April and hope that this may be my last session.
I am looking at that possibility positively and trust the heamotologist to use their experience and expertise to help us make the right decision.
My bloods were NORMAL after round two concluded although the proof will be a bone marrow biopsy. When I started treatment my BM was 97 per cent infiltrated.
Have a candid discussion with your doctors to put your mind at rest. As a nurse you must surely have confidence in your physicians look at this as a positive situation but get the information you require to put your mind at rest.
Thanks Geoff. I have been somewhat hesitant with my local hematologist due to some bad experiences with another local hematologist when first diagnosed. It just seems as though I have to literally drag information out of them when I feel they should be providing information to me as the patient. I will remain positive and I am sure the treatment so far has been successful. Good luck and hopefully this will be your last treatment with great results.
For what it is worth (and I am no expert at all - so it probably is not worth much), when I asked my specialist about doing only 5 instead of 6 rounds, he told me that there was no real scientific proof that 6 rounds was better/more effective than 5 rounds of FCR. This seems a little counter-intuitive to me but as we know everyone's body/cancer are different so ...
Thanks, I really appreciate everyone's input. I am feeling better today and will follow up with my local doctor and most likely pay a visit to my CLL specialist. It's always good to hear that the general consensus is that 5 rounds may just be good enough. Jomary
I too only did 5 rounds of FCR in 2013 and achieved MRD. We'd decided to stop as my platelets were only bouncing around the 70 mark. As my other blood results were all normal my consultant didn't feel I needed number 6. In fact I'm glad I did call it a day, even now my platelets are only just reaching 100.
Louise, thank you for sharing your results with me. I know it's probably best to stop with the drop in platelets and the possibility it may take some time to recover. I was so overwhelmed yesterday when the last doses of FC were cancelled. I had it all planned- 3 more doses and done with the best chance of a remission. Somehow getting the news of no more FC sent my into somewhat of tailspin! I am feeling much better today and thank you for sharing. Jomary
I completed 5 cycles of FCR in Feb 2011 - I responded really well to the treatment, and my only problem was chronic nausea each month. My consultant ran a blood test after the 4th cycle which showed the CLL was no longer evident, so after completing my 5th cycle he said there was no need to go ahead with the 6th one. Needless to say I was over the moon at not having to go through the nausea again.
Unfortunately I only had 3 good years of remission, and am currently undergoing further treatment with BR - 4 cycles down, and 2 to go.
I think everyone is different. Some people have FCR and a year or two later they need treatment again, while others might go on for 10 years or so before needing more. I’d certainly share your concerns with your specialist, and perhaps he can set your mind at rest. I do believe that stress and worry are two major factors in the progress of my CLL.
Good luck with your treatment/remission whatever you decide.
Thanks- I was lucky- no nausea but here in US it seems everyone gets FCR IV with pre-meds for nausea and Zofran to take orally for 3 days after which seems to really help. I agree that stress and worry can foster the progression of CLL. I feel much better today after all the helpful posts. I realize there are no guarantees. I guess yesterday I felt that six full cycles would somehow postpone the reoccurrence of CLL/SLL indefinitely. I know this isn't true but I guess the emotions of having to deal with it are somehow better felt if I believed that FCR would be almost like a cure and I could return to a normal life. I know that at some point it will return and when it does, I will deal with it like everyone does. It's the uncertainty that occasionally gets to me. Thanks again for your input and while 3 yrs may not seem like a long time-if I can get that long, I can only imagine the treatment options we all could have at that time. Good luck with your current treatment and may it produce a long remission. Jomary
The truth is that no one can tell you whether or not you need 4,5 or 6 courses of TX with FCR to get you the best outcome. You and more importantly, your Onc, should know that not all 11q- patients are at high risk which is one method of better assessing how much chemo you need. The less risky 11q- patients do not have the ATM (Ataxia Telangiectasia Mutated) gene deleted. Because 11q- patients commonly have a heavy burden of disease located in the lymphnodes it is reasonable to assume that to achieve a good clearance of the cancer cells it will be more difficult than patients with a primary tumor burden in the peripheral blood. The ATM can also be mutated in degree although I am not aware that poor prognostics have been based on any meaningful mutations.
It did not surprise me to read in one of your replies that your Onc is not a CLL specialist when I read that you had a PET scan half way through your treatment. Many non CLL specialists who may frequently treat more aggressive lymphomas will be quick to order CT or PET scans that are unnecessary in a CLL context without suspicion of a secondary lymphoma such as RT (Richter's Transformation).
Your Onc is perhaps and legitimately so, attempting to balance the risk of the toxicity from FCR that is not limited to low platelets but can manifest in delayed onset neutropenia or damaging the marrow in rare cases leading to MDS (MyeloDysplastic Syndrome) or even AML. A PET scan or CT is not considered to be helpful by any CLL specialists, I am aware of, in assessing the risk vs benefit particularly halfway through a course of TX. Here are two abstracts (sorry I don't have full papers) that frame the discussion of 11q- risks based on status of ATM gene.
Considerations of traveling are a much greater concern before a problem like what you face presents itself. I know first hand and when I realized I was in the hands of an incompetent Heme/Onc that drastically moved up my expiration date, I began traveling 450miles, one way, to my current specialist Dr. Byrd and am grateful to be able to do so. Your hour or two one way is a smart and small sacrifice for peace of mind.
Your situation is interesting in that even if you were to achieve an MRD neg it is no guarantee that CLL cells were not hiding in the lymph tissues (A possible independent risk factor in any patient with bulky nodes) waiting to repopulate. An interesting strategy would be to put you on a KI (Kinase Inhibitor) like Ibrutinib that functions to mobilize cells out of the lymphnode compartments and into the blood stream where they could be detected and addressed by more therapy of some type if found.
Here is hoping you have a less aggressive 11q- profile and your anxiety gets less with a consultation from a CLL specialist.
Thank you for all the information. I do know that I am positive for ATM deletion. Results from FISH testing weren't really any more specific and that was from 2 yrs ago. I needed to do treatment with FCR as Ibrutinib is only available if there has been relapse after 1 treatment. So, if I do need something in the future-Ibrutinib may be an option.
And yes, you are right- it is a small sacrifice and I am very lucky to be so close to such a great CLL specialist. I do plan on continuing to see her as needed however we both agreed to try treatment with my local onc. with Dr Lamanna (CLL specialist) to consult as needed. I was getting treatment 4 days a week every 4th week while still trying to work. I would have preferred treatment with her in NYC but logistically with working it didn't seem possible. Plus I really doubt I would have been able to drive there 4 days every 4th week along with follow up appointments.
I think I believed that 6 treatments would somehow almost guarantee that the CLL would be knocked into remission. I guess I still have am having a difficult time believing I have cancer at times. As I have said, my anxiety is much better today thanks to all of you wonderful helpful friends on this site.
Thank you again for your calm, reassuring words. I deeply appreciate your time in providing me with so much support. Jomary
Hello, wanted to reach out to you. My husband has sll and a secondary disease called cold agglutinin. He I was treated in boston at dana Farber and is doing very well. Went through six months of chemo bensamustine and Rituxan combo and overall went through fine. We are actually in Boston getting his scan to see how his lymphoma is doing and his blood all looks good. He still feel tired and has some other issue from the chemo like neuropathy and numbness in fingers. Would love to her back from you as well.
Hi Cathy- I am sorry to hear your husband also has SLL. I know Dana Farber has a wonderful reputation and it seems as though he is doing well for now. I haven't had any neuropathy or numbness and my fatigue has greatly improved. I actually feel better than I have in the past few years. I guess I don't want to go back to having very active SLL- I didn't realize how bad I actually felt and how much of an effect it had on my life. I was feeling the 6th treatment would somehow magically make the SLL stay away.
I now realize what I was feeling yesterday. It was such a shock to plan on my last days of chemo-then get a call from a nurse saying chemo is over. I also think that because I have felt so well, I lost track of all the possible serious complications that are more likely to occur with continuing with those last doses. Thanks to WWW for reminding me and putting things into perspective. I wish your husband continued good luck and you well. I am sure the uncertainty affects you as a spouse as much as it does us of those who have CLL/SLL. Luckily we have each other on this site for support and information. Jomary
I too had a similar situation. I also have CLL/SLL and my 6th BR treatment was cancelled due to dangerously low blood counts. I too felt uneasy with the decision as I wanted to be sure to get the very best results. I can report that my treatment ended two years ago and I am doing great. Have been traveling and living life to the fullest. My doctor explained the decision to skip the last treatment as responsibly assuring that the treatment didn't do more damage than the benefit of a final infusion. I chose to trust her and so far so good. Hang in there. You too will feel better soon.
Hi Jomary, hope you are feeling a bit more hopeful today. I too had 5 FCR and had to stop due to neutropenia. (3 years later) I find myself relapsed. I am now taking Ibrutinib. My point is when I went to the hospital I had to see the specialist nurse and she asked me if I managed 6 rounds of FCR- when I told her no she said "not many people do". I think therefore we may be in the majority. I must say the ibrutinib is suiting me very well and i have already seen a vast reduction in palpable nodes. I work as a nurse too so I know where you are coming from. Chin up- we are so lucky to have treatments available that a few years ago were not. The future for CLL's is looking rosy
Thanks Penny. You are so right. We are very lucky especially with all the new treatments becoming available. I forgot to consider the toxicity of the FCR in my quest to get into a remission. I am so glad Ibrutinib is working for you. I truly appreciate each response and connecting with others in the same situation. Jomary
You've had so many replies that I confess to not reading them all - so my reply may only serve to repeat what others have said.
I completed 6 rounds of FCR but rounds 2 and 3 had a reduced level of the 'F' element due to my extremely low counts (especially neuts and platelets).
Nevertheless, I still obtained MRD negative status. We are all different and we don't all require 6 complete rounds of FCR. So try not to be anxious if you don't have all 6.
As someone mentioned, FCR is very toxic. Twelve months on from treatment, my blood counts are still trying to recover - but I'm still in full remission so it was worth it!
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