I would appreciate opinions folks. I finished V and O after one year in March of this year for CLL. I expected to feel well and less fatigued and painless. This hasn’t happened…I’m sore in my hips and lower back, just achy. Fatigued after little activity. Both unusual for me as I’m normally active, was all through treatment. My oncology appointment is November with two bloodwork’s to be done prior. First bloodwork just done and for the first time since diagnosis 7 years ago, everything is normal! Even the reds that were low a few months ago. Also, all through treatment Year, the nurses always commented that I had maintained my weight. Now I’ve gained 10 pounds. I talked to a friend who has undergone chemotherapy and is cancer free and she said she’s more depressed after treatment than during. Any thoughts? Thanks so much in advance.
when treatment ends: I would appreciate opinions... - CLL Support
when treatment ends
Hope for the best, start a very limited exercise plan. Keep goals in your future; don't get absorbed in your present circumstances, it beats discouragement.
🙂
Thanks for your kind reply. ❤️
It took a few months after finishing acalabrutinib +V+O before my treatment associated symptoms abated and my clinical trial nurse said this was normal. It takes a while for your body to heal and adjust to the removal of the CLL tumour. For some of us, the CLL related fatigue doesn't lift unfortunately. Gaining weight after finishing treatment is understandable, given your body is no longer dealing with the medication and treatment related challenges and you are less active. That situation can certainly encourage let down feelings. Give yourself more time to adjust to your remission and exercise as you are able. That your bloodwork normal is an excellent place to begin your adjustment to your new you.
Neil
Thank you so much for your encouraging words.
Do you eat lots of high oxalate foods? They can cause joint pains and depression. I wrote a post about it. If weight gain is a problem, did you try to reduce your carbohydrate intake? And by that I mean all grains, fruits, sweet beverages, tubers and of course all processed foods.
I had to Google oxalate foods lol! I eat a balanced diet. I have never been a big eater or a dieter. Always exercised and active. Reading replies on this amazing site has reminded me to get serious about activity again as I know I’ve been lazy and have given in to the fatigue. I don’t eat processed foods, soda, very little carbs. But I will start paying attention to my diet. Thanks so much.
As long as you leave out all known harmful substances from your diet and balance the rest - you're good! Especially if you couple that with reasonable quantities of exercise. I can't think of anything else we can do🙂. The devil is in the detail though. What is harmful and what is not. That's where opinions start to diverge 😉.
True, thanks so much.
Hello, I can relate to your symptoms. I have been taking zanubrutinib for four months and although my bloods /lymph nodes etc are almost back to normal range, I don't have the same energy as I did prior to diagnosis (5 years ago).Also like you many of my joints are painful /achy. I'm also early 70's. I take pain killers daily. I think it's something we have to live with...
Best wishes Mary
Thanks so much, you are right. I wish you well! ❤️
Hello! I’m absolutely with you on this one. I finished V+O a year ago. I lost 15 kg of what I like to think was muscle, but put 15 kg of fat back on but I’m not overweight. My muscles and joints are shot and a recent DEXA scan confirmed lumbar spine changes. I understand CLL can affect the spongy bone. I’m putting up with the clunky spine which may or may not be treatment related. I’ve started to exercise more and eat well and slowly making progress. I’m so grateful I had the much needed treatment though!
Im grateful too! I just didn’t put it all together in my head before or during treatment! I am eating well but need more exercise and will follow your lead! I wish you continued great health!
Best wishes to you too x
If you were fatigued or ill-feeling before and during treatment, and understandably sedentary, you may have maintained weight but lost muscle strength and mass. It will take good nutrition (specifically protein) and exercise to "get back". You must rebuild healthy tissue in place of every bad cell that was killed by treatment. It takes months or longer. As to the mental side: depression at times we are "expected" to be happy is extremely common, especially after big events in our life. If you are in the US, your oncology team most likely offers services specifically in this area.
Thank you for your wise advice. Between Covid and treatment, I have become lazy and less active so I will ramp up! During treatment, I often had people comment how well I looked. As CLL and the drugs represent themselves very differently in terms of side effects like hair loss and weight loss in some of us, we look normal, at least some of us who are most fortunate. So what I did during treatment was downplay it all. Even with my partner and my family. Now that it’s ended, I’ve realized how mentally drained I feel. Pretending to be fine was work! Thanks again for bringing this to my attention, very much appreciated.
Congratulations for successfully ending your treatment! Wow what an accomplishment! As I see all of you and my hubby as CLL warriors . I do belive now is the time to rest and regenerate of all that you been through. You deserve to be gentle with yourself and also please don't forget to do what makes you mentally and spirituality happy. You will be in my prayers.
Thank you so much. It is an accomplishment and I’m very fortunate to have great results. After this and also remembering five years of caring for my husband who dealt and died with pancreatic cancer, I need to be kind to myself. And be grateful. I wish your husband good results too.
You were an earthbound Angel to your husband and I'm wishing you much comfort and sending you a lot of virtual hugs
Right back at you! ❤️❤️❤️❤️
Hi, Cottager, congratulations on completing your treatment! I started the same regimen and didn’t get past the first 2 infusions due to my reaction to the O. So you have done well! My recommendation about the fatigue would be talk to your specialist, increase physical activity gradually, and give yourself time. As for your friend who had successful cancer treatment but is having depression, I would suggest them to ask if there is counseling available from their oncology team. As was mentioned, many hospitals offer that. I suspect that post cancer depression is a known possibility for any of us.
Thank you. I hope you’re well and they figured it out!
Hi, I can relate to your disappointment. I was on O and V for 2 years, Ibrutinib for a year before. I recall feeling now what, after treatment ended. I never felt like I turned a corner. Felt like more of the same Afterwards...lots of nausea and blah, fatigue through the roof. It took me a couple of years to really get back to it.
It was a slow upwards increase...sometimes one step back, one forward.
It helped me to stay grateful for very small things and lower my expectations of how I'd feel after treatment. It's been good the last couple of years as long as I rest and slow down. Best of luck
Lorna
Thank you, very honest and wise advice. I Forget âge is part of this and expect to feel young! Best wishes to you ❤️
Howdy,I finished O and V three months ago. Never missed treatment or dosage. Symptoms before treatment were fatigue, sore spleen, sore bones, weight loss and no appetite, nausea and fast decline in ability to exercise due to spleen.
Fast forward to now, much more energy and very noticebly so, still sore bones in legs, hips, ribs and random pain, nausea has really decreased, I have been painting my three story house. Working usually 4 hours at a time. So strength and stamina are much improved. Do still have some leg weakness. Red blotches sometimes appear on the top of my feet. Like they were in hot water. Mild petechie on lower legs here and there. Spleen and some slight rib pain here and there.
Bloods are all good and in normal range. I, like you was expecting faster bounce back and back to normal. My next clinic is in early Oct. I took a break from my last 3 month check. My Doc wants a full ct scan with contrast before Oct visit.
Hope you start feeling super well. All the best to you!
All the best to you as well! I feel better knowing this is likely normal!
Cottager1989 - Getting back into shape takes more effort now but is still worth it. As with anything, moderation is key. Find an exercise you can do with others or by yourself, and start small. For example, if you used to easily walk 3 miles, try walking 1/4 mile at your own pace. Gradually increase each day until it feels comfortable again.
I noticed that even though my blood counts are almost all good, my immunoglobulins were not normal. You might check on those levels.
For back pain, strengthening your core (think stomach) is usually recommended. You can look up exercises for strengthening your core online. Or see a physical therapist to get started.
Good luck!
Gréât advice, thanks so much!
I finish my V+O end of September 24.
I find that my legs constantly ache when walking. Someone with a zimmer frame passed me the other day. !When I queried the aching with my specialist he put it down to age.
I am 74. This time last year before treatment I was able to do fairly long walks on holiday with no aches so it is comforting when cll sufferers flag up similar problems.
Seems like there won’t be a sudden surge in energy after finishing the venetoclax judging by the replies. Still there was only one alternative to having the treatment.
I agree and we need to be pleased our treatment works. I also was able to do much more even throughout treatment than currently. I’m especially achy when I sleep and rise in am. Better as day progresses. I will persist and hope you do as well. Thanks and good health!
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