My husband has his 6th round of BR chemotherapy this week...I'm wondering what happens now? Do we just go away and wait for the CLL to return? During his chemo, we have had very little input from his Consultant ..I assume he will have a CT scan ...I wonder what questions we should ask? I have been reading about various supportive therapies and wonder if he should be having any of these? Should he have a Bone marrow biopsy ? Has anyone had a really long remission after BR?
I would be grateful for any input xx
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alice111
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Alice, I had a bone marrow biopsy after treatment doc said it showed nothing. I only had the B without the R . Going for my 6 month check up this week. I am also going on 8 years remission. May your husband get many more.
I only had B the Rituxin I had anaphylactic shock to. But my remission lasted 3yrs before my numbers started to climb. You will have a ct scan usually done within 3months. Bone marrow is usually done then too.
I expect you and your husband are pleased to have reached the end of treatment, and I hope he is feeling the benefit of it. I wondered whether he is not as well as you expected that has led to your question. I sincerely hope that is not the case.
Every time you wonder about what happens now, write it down then you will have a list of the things you want answers to, to take to your husband's follow up appointment.
Hopefully your husband is enjoying having relief from our cll symptoms.
Hi Alice. I also am very interested in replies as I've just had my. 4th BR treatment. V tired and 'spaced out' (head astray!!). Having had fludarabine 5 years ago I'm also wondering about remission and what's next!!
Hi Deenie , ( my husband is from Ireland and we love Donegal btw ) ..My husband has been very tired , life has been on hold for the last 6 months to be honest. Hoping that you have along remission like others have had...take care x
I had BR nearly 4 years ago, and have been in remission ever since - will have a 6 monthly checkup in about a month. These were originally every 3 months, but the gap was increased after a while when there was no sign of the CLL returning.
In the short term, your husband must take care to avoid infection, so as little contact with other people as possible. I got an infection after my first round of BR and spent 9 days, really ill (severe diarrhoea), in hospital. Be careful!
My consultant took a bone marrow sample after the treatment finished (4 rounds) and was impressed with the results - no cancerous cells could be detected. Maybe your husband will have that check too, and possibly it may be an indication of the likelihood of a long remission.
I am approaching 1.5 years after end of my frontline FCR and the numbers are slowly but surely climbing back up. Spoken to the doc who said BR may be in store for me in the near future..probably 6-9 months. Good to see people going into long remission after BR, gives me hope that it will be better/different than FCR treatment..
A little apprehensive about another chemo and would like to exercise the Ibru option but this drug is not yet refundable over here...
@Alice - I did have BM test done after FCR and a full body CT to assess the state after treatment.
I think the real expert CLL docs would tell you that a CT Scan and BMB now will not provide much predictive information ( those tests will not tell you how long your husband will be in remission). It may satisfy some curiosity for your doctor about how well the BR reduced the number of CLL cells in your husband, but not anything useful about how fast his CLL will grow back.
If they do a BMB, and run a MRD test on his marrow, a negative finding would be a very good sign that it may be a long while until the CLL returns. But that MRD test can be run on the peripheral blood and give almost as accurate indication.
The only way to know how fast the CLL will grow back is to Watch, Wait and Test periodically, and even the blood testing is a crude, imperfect indicator, but it is the best method we have to forecast his future.
I am a very impatient person (engineer), and despite being concerned about too much radiation from a CT Scan causing more skin cancer, I'm considering getting one anyway to assess how big my nodes and spleen are at this point. But that will not tell me how soon I will need treatment, again.
I had BR after 2 rounds Rituxin after which each time my numbers climbed quickly.I was unable to have last BR infusion since my body could not cope.I started inbrutinib last Sept. or Oct. Doctor says numbers look good,but has always said that during treatments,so I don't know if I really am doing better.As with all treatments I think it becomes a wait and see time.As with you I really do not know what is next.
Good news that you are on Imbrutinib as that does seem to be very effective .. I'm worried my husband won't get it as cancer drugs fund want to withdraw it for relapsed CLL.. You are right , we are all a bit in the dark .. Good luck and thanks for your reply x
I was first diagnosed in Sept. of 2010 and was good until Feb. 2014, When I "relapsed" I was started on rituxin . Since it and the BR were not working or being tolerated I was started on imbrutinib. In the literature and on the web ,supposedly imbrutinib is also for those who have not responded to other treatment protocols.It seems like imbrutinib would be a viable choice.Of course I am not a doctor and know 1 dr. treats differently then another.Good luck to you both.
I finished FCR July last year, this was followed up with further blood tests and CT scan. I had a meeting with the Haematologist/consultant about 3 months post FCR to discuss and review the results of both. However further complications (bone marrow blip hence put on G-CSF for a month) but always in contact with a clinical nurse and triage. The consultant deemed a post FCR bone marrow biopsy as unnecessary, which I was more than happy to go along with. I am now back on WW with an expected 4-5 year remission. I am now on the six month list for return visits but this will be blood test reviews and I expect a meeting with the Haematologist Registrar as I am now classed as well. They have been incredibly supportive and informative all the way. If you are worried then call or email your clinical contacts. I hope it all works out well.
I started 5 months of FCR in October 2010. When I completed the treatment, my consultant was really pleased with the results and said I should hopefully have at least 5 years before needing treatment again.
Unfortunately this wasn’t to be, and I started 6 months of BR in January 2015. My consultant was more cautious this time round, and said he hoped I would get 1 to 2 good years before needing further treatment.
I’m currently on watch and wait, with blood tests and telephone consultations every 4 months, as sitting in the oncology waiting room makes me feel panicky and nauseous. Since completing the BR, I’ve unfortunately been plagued by continual chest infections - in fact I’ve probably been infection-free for a total of two months out of the past nine. Its quite exhausting at times, but hey ho, that’s the way things are and I try not to let it get me down or to stop me doing things.
Since being diagnosed with CLL 10 years ago, I’ve never had a CT scan or bone marrow biopsy. I don’t know whether having those tests would have made any difference to the treatments which I was offered.
Hopefully your husband will have an excellent remission.
Thank you for your reply...I'm sorry to hear that you have had a tough time ..I hope you get a long remission this time too..just like you, my husband has had constant chest infections during BR ...I'm hoping this will improve when the treatment finishes...take care
Great to hear that your husband's last treatment is this week, in fact he might have finished now. Good news Alice. I finished BR last September and have felt better as the months go by. Best advice is do not let your guard down, stay away from people as much as possible, especially infectious (how do you know) people. It's best to take evasive action and drink lots of water. I still took my temperature daily but have eased of now. My visits to the consultant have been more spaced out too. Initially every 2weeks, then 4, then 2 monthly and finally now 3 monthly. Which is good news for me.
I did have a CT scan about 3 months after treatment stopped. For me I'm just so glad to
Feel better after feeling rough for so long. I just hope it lasts as I cannot have chemo again, but I'll cross that bridge when i get to it. Just let your husband rest up for a while and slowly he should start to feel better. Certainly good news that treatment is over ,now for the recovery. Both of you enjoy the spring and summer which is almost here and my best wishes are sent to you.
Last round of BR was today !! Thank you so much for your lovely encouraging message...we will take your very good advice...made us feel optimistic for the future. We are hoping that soon he will start to have more energy and then we intend to enjoy life and try not to think too much about what the future holds. I hope you have a long and healthy remission ..enjoy the better weather
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