My husband is into his 2nd week of treatment - currently obinutuzumab but will commence venetoclax in a few weeks (this is a 52 week programme). After his first treatment he came home after being in hospital 2 days and managed 30 hours at home before being admitted to hospital with neutropenic sepsis. He received IV antibiotics, injection to raise neutrophils and blood transfusion. I brought him home on Friday after 2nd round of obinutuzumab and he is back in hospital tonight with a low neutrophil count. Back on IV antibiotics.
As his carer I feel completely powerless and scared and wonder if my husband's experience is common and are there support groups for carers to talk about their experiences? We are UK based.
On each occasion the hospital has been brilliant, but of course Covid means we are very separated - no visiting.
I would be very interested to read of similar experiences following treatment regime which are UK based.
Many thanks.
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craigydon
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craigydon, I am still in W&W, so no experience to share. But I wanted to let you know, all on this forum are great sharers of info. I'm so glad you have joined. You will receive more info and support than you could ever have imagined. There are many in the U.K. on this forum. I live in the U. S.Welcome and my best wishes to you and your husband. Sandra🙂
I haven’t had the O + V treatment your husband is receiving but I did receive chemotherapy which included rituxan, an earlier generation of obinutuzumab. While my treatment went relatively well, I did require 4 blood transfusions and I felt unwell in the early going so I have some understanding of what your husband is experiencing. The treatment is killing his cancer cells and unfortunately some healthy cells are also casualties. This is an unpleasant part of the process but it is a step in the right direction. It will very likely get better moving forward as his system strengthens. I know it isn’t easy but try to focus on the positives. Better days are ahead.
I'm very sorry to read about the bad start on O&V. I also had a very difficult start, described on this site, in the first week of March 2020. Hang on in , it is absolutely worth it. Despite the emergence of Covid and subsequent restrictions that complicated my treatment O&V worked for me as it does for so many people. 13 months after starting the treatment I was pronounced uMRD, and remain so.I suggest that you communicate your concerns, if not already done, clearly and constantly with whomsoever is in charge of the infusions. You are on a journey too and deserve appropriate care and concern. My consultant was brilliant, if a little worried from time to time! Stay with it, if at all possible, the prize is a unique gift.
This is such a positive message, thank you. Covid is the pits. I'm so pleased that all is good for you. My husband came home yesterday and they did go ahead with today's treatment so that is the third lot of O. Next week he will begin V. I will look for your previous post as I am interested to read. I am so pleased that my daughter convinced me to post, it has lifted my spirits considerably. Thank you again.
Hi. I don't understand about treatment but I do about separation from my husband. I have been in hospital with pneumonia for 13 days. The only contact we've had is by phone and messaging services so I know how you feel. I find mornings and early evening the most lonely but a phone call if only talking rubbish things is most welcome. I hope your husband's journey settles down and becomes easier.
thank you for your support. The separation is so hard isn't it. We too only had telephone. I do hope you are feeling better and either back home or soon to be home. My husband is now home and is currently completing his third treatment as a day case. Im crossing everything that he stays well this time and that he doesn't lose his neutrophils.
I am still in hospital but not in isolation so I saw my husband yesterday and will see my daughter later today. I am feeling much better thank you. I will have everything crossed for your husband too. Good luck.
Hi and welcome craigydon to our forum. You have come to the right place! I'm so sorry about the problems and they will seem all the worse as covid gets in the way of visiting. I had Obinutuzumab (with chlorambucil) and had problematic reactions to it during administration, plus neutropenic sepsis which entailed a total of 28 days in hospital over 3 visits. All very depressing at the time, but do stick with it. The GCSF jabs will work and I too had brilliant care on the NHS. The whole process of treatment can be pretty debilitating but he will get through it all. I'm now 20 months post-treatment and feel great - like so many others in our group. I'm sure it's worse for the carer, but my wife made such a difference to my determination and positive attitude that I'm certain that it accelerated my recovery. Keep us posted and we'll try to give both of you a boost when needed. Handley
Hi Handley I am so pleased that I have started using the forum. It has really helped. So many positive stories and lovely responses. I am really pleased that you are feeling well. The last GCSF jab seems to have worked well and my husband has gone ahead with his third lot of Obinutuzumab today. Just hoping that his neutrophils don't disappear this time. We are due to see the consultant on Tuesday so that should help too. Thank you so much for taking the time to reply. Many of the responses have made me cry, but because they are caring and also positive. I hope that in time we will be posting positive stories. Best wishes.
There are members who take Venetoclax without the Obinutuzumab. You could ask his specialist whether that would be an option and whether that could help. Though as far as I remember V can cause neutropenia too.
Sorry to hear about your experience with Obinatuzamab , I was diagnosed at stage 4 with 100% marrow infiltration so went straight to Obinatuzamab supported by Ibrutinib, Nov 2020. I had no issues. However what I would say is hang in there Obinatuzamab is brilliant , I was in remission within 240 days and completely clear of CLL. I now on acalabrutinib forever or until it stops work. Keep safe.
Hi thank you for taking the trouble to reply. We are learning so much at the moment! This forum is certainly helpful. My husband had his 3rd dose today so we shall see how the next few days go. You keep safe too.
Hi CraigydonDon't worry all will be well but it takes a little time and perseverance. I was diagnosed stage 4 CLL almost exactly a year ago and began treatment with Obinutuzumab and Venetoclax in April this year. Big reaction to first dose of O so was suspended 1 week. Following week another reaction and I was admitted that night with Sepsis just like your husband. IV antibiotics did their wonderful thing. I felt terrible and was convinced I was dying but within 48 hours the antibiotics kicked in (I remember saying many silent prayers of thanks to Alexander Flemming and all the other brilliant scientists involved in the discovery of penicillin and its subsequent developments) I was released after 5 days having the next O infusion on the last day in hospital and all was fine. They did give me IV pethidine to cover the infusion of O and from then on I never looked back. The pethidine just relaxes your system and prevents over reaction. You can read all about this on my profile.
All subsequent infusions of O went fine but they did give me pethidine every time which made it very relaxing. Just like your husband I moved on to Venetoclax and ramped up to the max dose of 400mg with no problems at all. I have now completed the 6 IV O infusions and am now carrying on with V for the next 4 months. Most importantly the drugs have worked incredibly well. On diagnosis my basic numbers were as follows (Sorry these are UK numbers why cant blood results be reported in a universal number language across the world?)
Haemoglobin 67
White Cells 58.9
Lymphocytes 40
Platelets 73
PET Scan revealed multiple sites of badly swollen lymph nodes above and below the diaphragm and a severely enlarged spleen (19cm)
A couple of weeks back I had another CT scan and a blood test for immunophenotyping. They showed all lymph nodes had returned to normal size the spleen was back to a normal 11 cm and (best of all) no CLL were detected! As of yesterday my blood numbers are now:
Haemoglobin 139
White Cells 2.3
Lymphocytes 0.72
neutrophils 1.6
Platelets 96
So yes, it was scary at the start but after the first couple of weeks it has been a breeze. I feel great. I'm back on my bike, walking the dog 3 miles a day and digging my beloved allotment. Such a difference to 6 months ago. I do still have days when I feel exhausted and you can see I have a constant battle with neutropenia (very common with these drugs) but this can be handled. My blood is checked twice a month but the consultant says I only need to do once a month from now on. At the end of treatment she will do another CT scan and immunophenotyping test and If all goes well I will be drug free and then monitored every 3 months. She assures me that once I am off the drugs the tiredness and fatigue will fade away and my immunity will begin to rebuild over the following 6 months.
I feel so sorry for you and your husband as I have been exactly where you are now just a few months back and I remember the worry and fear but my overall message is stick with it, hang in there and roll with the punches as you let these incredible new drugs get to work.
Many of us on this forum are on the same treatment regime and have similar stories to me and I feel sure in a few months time you husband will have a happy outcome to report to us. Please keep us posted and I send you both every possible good wish and lots of luck. Patrick
Thanks Patrick for a really informative and positive message. It lifted my spirits so much. I shall read your profile with interest. I am so happy for you that everything is going well. I was very interested to hear that you are back cycling and on the allotment. My husband is a keen cyclist (hasn't cycled for a bit now) How long was it before you felt able to cycle? I have heard mixed things about gardening - infections from the soil? We are going to investigate how to manage the neutropenia. His last injection was brilliant but of course may well be short lived. My husband seems to manage the actual infusion fine, it is about 2, 3 or 4 days after. I have just brought him home after his 3rd infusion. Now that I have gained the confidence to use the forum I may well post more!Thank you again. It meant so much that you took the trouble to reply. Good luck and best wishes to you too.
Hi. Welcome to the family, I do not have experience of that treatment. I had four infusions of Bendamustine and Rituximab in 2017 and contracted neutropenic sepsis. I spent eight weeks in hospital, it was a tough time but i came through it. Wishing you both well.
So sorry you are getting off to a rocky start with this treatment. I am 5 months along with the treatment; except for a slight reaction to the first infusion it has been smooth sailing. I was so surprised at how quickly it eliminated fatigue and enlarged nodes. From what I read here, many people are getting fabulous results from the drugs. Hang in there, things will get better. Praying for you.
Thanks Hiker13. Your message is so positive and encourages belief. My husband had his 3rd infusion today so a nervous few days coming up. I am so pleased that it has been going smoothly for you such good news. Praying that it continues for you. There do seem to be amazing results.
I’ve been on O&V for the past year (I’m done with O, almost done with V). My doctor has her patients have the first Obinutuzimab treatment in the hospital, so she can monitor the reactions and respond accordingly. So I’d say it’s exactly to be expected what your husband is experiencing. I had to be in the hospital for 8 days. It was pretty horrible but with 3 months to go, there is no sign of CLL in my blood. Btw I didn’t react to subsequent treatments, except a rash on the 2nd).
Hi thanks for replying. He was in hospital for first and 2nd doses. It seemed to be after that his neutrophil count became problematic. All messages are so positive about O & V. It is very encouraging
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Anyone with AF got any experience with taking either Zanubrutinib or R&V
REMISSION !!!!!!!
He’s home! Hurrah!
