when treatment ends

[Cottager1989]

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.

[Spark_Plug]

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.

🙂

[Cottager1989 in reply to Spark_Plug]

Thanks for your kind reply. ❤️

[AussieNeil Partner Administrator]

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

[Cottager1989 in reply to AussieNeil]

Thank you so much for your encouraging words.

[LeoPa]

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.

[WeetabixCherries]

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

[carolly]

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!

[Ladylin151]

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.