After nearly eight years of slow-growing CLL, I finally had to have treatment. Was hospitalized for a couple of days last week for the first infusion. The day after release I felt more energetic than I have for nearly a year. Then back to symptoms. Fatigue morning until night. Walking the dog made me sweat, even in the cool air. Still does. I had no energy for much beyond opening my mail. Still don't. Sometimes feel a bit "unsteady on my pins" when I walk around.
Alas, my appetite, which had pretty much disappeared over the last six weeks (eight pounds looked great off; thank God there was at least one positive side-effect!) seems to be returning to normal. Drat! If I have to have symptoms, why can't I retain the one positive symptom?
In any case, would love to hear about the experience of others who have had this treatment. Do my physical reactions sound typical? What can I look forward to over the coming months?
I await your collective wisdom.
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Ducksoup
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I have had six infusions of obinutuzumab this year and it has worked well. Initially I had fever sickness and diarrheoa. I also felt relatively awesome the day after, sometimes, but I suspect that is because of steroids given during the treatment to reduce reaction.
Share your symptoms carefully with your doctor so that you can together understand.
Hi - I also had treatment with gazyva in April. I had really bad night sweats and felt pretty awful the month of April. May was better and by Memorial Day, I had a lot more energy. Interesting that I lost my appetite in April but it did come roaring back and I am now dealing with the extra pounds from steroids. Good luck!
The first round was the worst, and I was mostly fine thereafter. I also feel energetic the first day after and then I'm a little sluggish the next couple of days. I've had 5 rounds, 3 to go. I have also gained back all the weight I lost (intentionally) prior to treatment. Getting your appetite back is common according to posts I've read here and in fact, the one day I was a few pounds lighter, they freaked out, so a couple of pounds gained is a sign of health even if our clothes don't agree.
This is so helpful. I'm normal! Others have mentioned steroids during treatment. I don't believe they've given me steroidal meds, but today is Treatment #2 and you can bet I'll check it out.
You are normal. I felt horrible the first day of treatment and haven't felt horrible since. I did neglect to mention the treatments make me sleepy. They said this was normal because we kind of freak out our body with this foreign monoclonal antibody. I think you will be fine today. Keep us posted.
Hi Ducksoup ! I felt the same way after my first couple infusions of GA101 ! But it was short lived, thinking it may have been me and some wishful thinking. I also had ABT199 for a year. This drug made me super yucky. Now it's been 10 mo post drugs and I fell great !
Hi, I'm on my 7th Gazyva infusion tomorrow. I've not had the steroids the last two times which has been nice as the side effects were not fun. I've had a bit more fatigue this past month. I'm having the sweating issue too but not as bad as prior to treatments when I had drenching night sweats. I've also gained back most of the weight I'd initially lost (darn) but my appetite is back to normal now. I'm definitely feeling better overall now than in August prior to my treatments and my blood numbers are almost normal. Blood platelets have gone from 71 to 135. 3 more treatments to go!
Oh, no, this is treatment for the disease itself. Fatigue and appetite were symptoms, but my wbc had shot up by 40K in four months. Found out today that my lymphocytes, which were at 154K before my first treatment last Monday, were down to 10K when I came in for the second course today. Hooray!
My Gazyva treatments are not in conjunction with any other medicine. I saw 3 oncologists and 2 of them said it was effective on it's own, one recommended adding chlorambicil.(which I did not do). I was having daily high fevers and horrible night sweats along with low platelet counts prior to starting the infusions. Feeling so much better now, fatigue is still there but I can walk several miles again, and I played a full 18 holes of golf yesterday for the first time in 8 months. (Riding in a cart, but still a lot of walking). My spleen was enlarged prior to treatment as well and that has gone down to normal. I'm hoping for continued progress.
I asked my question because it has been suggested to me that I might best be treated (not clear as to the symptoms calling for any treatment) with Gazyva and Chlorambucil.
Thank you for sharing your experience with just Gazyva. I am reluctant to have any treatment (as are we all, I guess) but it so nice to be able to know that others have fared well with treatment.
Do you know or remember why the 1 Dr. suggested the addition of Chlorambucil?
As always, thank you to all who share their experience.
Gazyva and chlorambucil were used together in clinical trials and that is how it was FDA approved...
Chlorabucil is consider the treatment backbone... but some don't want chemo so they drop it... How effective it is a single agent is yet to be determined..
Skincade, you were particularly helpful when I posted an earlier plea for information from people who had been treated with Gazyva. Now I have another question for you.
I've had three months of treatment, with another three to go. My energy has been increasing very little by very little, with a bright and shining, high-energy day once every week or two. But today, despite 10 hours of sleep, I'm totally pooped. Sleepy this morning, fatigued this afternoon. Haven't been so tired for a while.
Did you have fatigued days this far into treatment? All my numbers are back in the normal range and I feel like I should be feelin' like a million bucks. What was your experience?
Hi Ducksoup, my fatigue is not as bad now as the first couple of months. I just finished my last infusion, last week. I've been feeling really great this past month.....probably because I knew I was almost done! I'm able to walk several miles per day again, which is something I love to do. BTW, I have lymphoma not CLL, but was told that they are treated the same. I've had some skin issues which I think are likely side effects from the Gazyva. I will have a PET scan in a few weeks, then I have to have my gall bladder removed. Keep me up to date on your progress as well. I'm cautiously optimistic that I'll be in remission. Keep in touch.
Skincade--Ooh, let's hope let's hope you go into remission. Me too, for that matter. Then you have the gall bladder. Just one d**n thing after another. I'm one of those crazy women going to Wash. DC for the march in a couple of weeks. Hope I can make it the whole way. If not, I'm prepared to stop along the way and just watch through a window. Fingers crossed.
Let's stay in touch! BTW, where do you live? US? NZ? Canada?
I live in California, was thinking of marching here too! Ive also had some odd things going on with the skin at the base of a few finger nails which im attributing to the treatments as well??? Are you having any itchy skin issues. Mine is on my face....Good luck to you.
I'm in Saint Paul. Where are you in CA? I haven't had any skin issues at all, but my nails are super fragile. In fact, going in for a Big Deal Manicure this weekend. Maybe have to get false nails or something. Not something I've ever wanted.
Skincade, sorry to bother you again, but I just want to clarify very quickly: Did your numbers return to normal or close to normal in the first months of treatment? If so, did you continue to feel fatigue? I'm really trying to get a handle on whether my experience is normal.
My blood numbers did return to normal within the first few months, I was still pretty tired a few days after treatment. My blood platelets though initially went up to 135 (they were around 70-80) but have now gone down again to 113. ...which concerns me, but my doc doesn't seem too concerned. How are your platlets?
Thanks so much for your response. Sounds like you did not have the everyday fatigue I'm still feeling. Might do another posting when I get a minute. See when other CLL folks with chronic fatigue started to have more hours in their productive day on obinutuzumab.
I was put on Ibrutinib for my aggressive CLL. Prior to that I was also hospitalized and underwent FCR (fladeribine, cytoxin and retuxin) therapy. When my counts got bad again, I was treated with retuxin only and stayed stable for almost two years. When my counts when up agin, I started the ibrutinib. My counts were much better but I developed some side effects, mainly lip swelling, some weight gain, ruined finger nails, and I did not feel much better except sweats almost disappeared. I have been off all medication for CLL for two months and do not anticipate going back on Ibrutinib until my white cell count gets out of the normal range. Sweats are still not too bad, mainly at night or upon waking in the morning. i have taken to sleeping with an ice pack in case sweats come in the night. It is important to try to do some exercise, especially to strengthen your legs.
Really good information. I'm blessed that I have to walk my dog every day. Usually it's a nice, long walk in the morning. Helps with muscles and joints. I'm hoping my side effects are minimal--I guess time will answer that question. And yes, I sometimes need an ice pack in the night. Alas.
I have just finished 8 months of clorambucil and six of gazyva
I am now 80 years old and was 8 years on watch and wait before treatment
In general the side effects were not terrible although being tired is part of the system . I have finished treatment a month ago and the feeling is of improvement, the only side effect still is aching of joints and tightness of muscles and tendons which i hope will improve with exercise.
Although sometimes difficult I consider of utter importance keeping the spirit up and feeling a strong desire to feel well.
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