V and O treatment

[Gardengirl44]

Just curious about something... I received V and O treatment as a part of a trial and am in my year 2 post treatment. Feeling good over all, however I do suffer from muscle aches and recenly hip pain. It sort of travels from side to side. I set up a rheumatology appointment to get checked out. People are so fast to say that's what happen when you age and stuff like that. But this was never my "weak" area. Any of you have a similar story?

[Snakejaw]

when I went on venetoclax and zanubrutinib, I had some pain in my lower back/rib area that continued for a few months. The doctors said it was a muscular/skeletal issue, but I’m not so sure as I’ve never had it before and am in fairly good physical fitness.

I focused on some light weight exercises and stretching in the area and it seems to have helped, or it just stopped occurring on its own.

[Gardengirl44 in reply to Snakejaw]

good advice thx.

[sdkeith1967]

I’m a year post V/O treatment and I get debilitating hip and femur and sometimes calf pain. Ibuprofen does help and getting up moving around works out the kinks if you will but it’s so awful pain. It’s not muscular bits deep bone pain hut all my blood work is perfect. No red flags on any subject

[Psmithuk in reply to sdkeith1967]

it sounds like my hip pain. Time for a GP visit perhaps?

[Gardengirl44 in reply to Psmithuk]

definately. I also saw a great video on the cll society about bone density research with CLL. it's great.

[Otterblue2]

I was on the AVO trial. I had a serum reaction to my last Obin infusion, resulting in systemic arthritis that has not gone away after more than two years and is not rheumatoid. I had a very poor tolerance for the drug load I was required to take. Though my liver enzymes were ok, I believe my liver was chronically congested. I did a liver cleanse/flush (a Chinese medicine approach), which made a huge difference; the only thing that helped.

[Gardengirl44 in reply to Otterblue2]

interesting. I tolerated the treatment well but I am pretty sure this is a biproduct.

[LeoPa]

I have periodic right hip pain. Mostly after I eat high oxalate foods. A few days ago I had some spinach. With heavy cream and calcium along with it (both bind oxalates).They helped nothing, for the next 2 days I again had some right hip pain So I'm done with spinach for a few months again 😀.

[Gardengirl44 in reply to LeoPa]

Wow! That's crazy.

[Pearlpink]

I do feel that my iron stores still drop fast, a year after treatment. My HB results always ok, but behind my lower eyelids looks pale regularly. And then respond really quickly when I take something. I have to eat red meat regularly, but I forget. The thing that reminds me is that my hair starts to drop.

I get hip and bone pain when my iron or vit d levels drop. I tend to think my body is still quite efficient at killing off bad cells and that I need to take more iron as a result! X

[Gardengirl44 in reply to Pearlpink]

Wow that's interesting. I have been doing the vitamin D more regularly. I am not a meat eater. I'll get my iron checked

[dvd1955]

3 years post V+O treatment. A very short time after starting the venetoclax the joints at the base of both thumbs started hurting. They still do. Diagnosis was arthrosis (not arthritis).

[Cottager1989]

I finished V and O in March and have bad hip pain on both sides. I injured my arm and it’s taking months and physiotherapy to help but still sore. All new since treatment. I’ve been active all my life and am not overweight, eat a balanced diet. You’re not alone, wishing you improvement as time passes!

[Gardengirl44 in reply to Cottager1989]

yes it's nuts. I could barely walk yesterday. I think aggitated by carrying heavy luggage.

I watched a video on the CLL Society that was great insight youtu.be/q5cUQ0gyToY(Not working as expected?)

[Gardengirl44 in reply to Cottager1989]

youtu.be/q5cUQ0gyToY(Not working as expected?)

[Cottager1989 in reply to Gardengirl44]

Thanks, this is very helpful. I’ll talk to my docs!

[Smakwater]

Post treatment I experience unusual roaming joint pain and muscle cramps that come and go regularly. They are more intense during cold and flu onset, and at night during the sleep cycle (Charlie Horse).

I have no scientific measure to connect the condition to the O+V, rather it is my perspective that it became more prevalent after the treatment. With the exception of IgM being low and platelets in range on the low end, my blood labs and inflammation markers are good. Whereas prior to treatment I was given a RA diagnosis that is now post treatment "non conclusive".

It should also be noted that there is the same perspective among patients with all of the other treatments, and that joint pain increases with untreated progressive CLL as well. It seems that there is no way out of this one unless you are the lucky Geno-Phenom. Factor in the aging and all we get is "part of the cost of doing business".

If someone figures out the causative relationship or even better, the cure; Please make sure that I get that note.

My GP suggested that I drink a bit of tonic water to relieve the muscle cramping, as it contains a safe amount of quinine, which I do regularly. I believe that the tonic water does help a bit, but again - no science. For those who are also of Irish descent, he did mention no Gin in the tonic. I do however flavor it up a bit with Limeade and and some ice.

Give it a try,

JM