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).

[TruthJunkie in reply to dvd1955]

What treatment was given for the arthrosis in your thumbs? Anything? Thank you, as mine are hurting a lot. I have been on Zanubrutinib for 18 months.

[dvd1955 in reply to TruthJunkie]

Not so much a treatment but some suggestions to try from my doctors. I'm a little wary of medications so asked for other options. What has worked best for me is wearing compression gloves at night and wrist sleeves during the day. Doesn't eliminate the pain but seems to reduce it some. I have an appointment with a hand specialist soon to see if anything else can be done.

[PoisonDwarf in reply to dvd1955]

I am treatment naive however, I had nerve conduction & EMG testing which was recommended by my CLL specialist due to issues with my shoulders & arms. Part of the results showed carpal tunnel syndrome in both wrists. The median nerve runs through the carpal tunnel to the thumb & all fingers except the little one. I do have arthritis in both hands but arthritis is not the cause of carpal tunnel syndrome. The arthritis in my hands went from zero to 10 in 3 months which I believe is connected to the dysregulation of my immune system from SLL.

I was referred to a plastics/hand specialist & I had my first release procedure last Monday. I had to wear wrist splints to keep my wrist straight at night only & they also have a compression element & overtime it did help with the pain but didn't cure the problem. I was waiting for a cervical MRI and wasn't prepared to agree to surgery until I knew the results. My situation is a little more complicated due to the fact it's not clear where any nerve compression starts. I am also not considered a good candidate due to my immune system, but neurosurgery won't get involved until the obvious issue with my wrist was dealt with. I will now be pushing for the other wrist to be done ASAP.

This is a long way of saying the pain relief from decompression of the nerve far outways the discomfort of the procedure & dislike of medication. It's too early to tell how it will heal, the release of a trigger finger caused more damage, but I would still have agreed to this surgery earlier if I had known the pain relief! If it's available, I would certainly recommend the nerve & EMG testing as well as seeing the hand specialist.

Hope hope you find a solution quickly.

Lynn

[dvd1955 in reply to PoisonDwarf]

I'm also wary of any surgery to my hand or wrist area. Even with the thumb pain, I still play tennis two or three times a week, pickleball once or twice a week, and ride a motorcycle. For some reason the pain doesn't seem so bad when I grip things like racket handles. No idea why, but glad. I worry that any procedures might affect those activities.

[PoisonDwarf in reply to dvd1955]

I was very wary. Pain aside, my finger tips have limited feeling & nerve compression was already affecting my fine motor skills. Without surgery the nerve damage would only get worse & likely become permanent. Doctors now know that carpal tunnel is not just a repetitive strain injury, it's also size related. My skeleton is the same size as a small 12 year old & I'm told I was always going to be prone to this! I can live with scars but like you, I want my hands fully functioning!

[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?)

[TruthJunkie in reply to Gardengirl44]

The information regarding Calcium Supplementation for CLL patients in this video (600 mg. Twice per day) re “Bone Health in CLL” with Dr. Deborah Stevens is not in agreement with recommendations on this list in the past week, regarding NO Calcium supplemen-tation (only in the diet). I remain confused, and am concerned about fractures at my age, with my physical history, and small frame. Think I will follow the advice in this video, and follow up with Dexa scans every two years. She indicates that often Dexa Scans give higher “T-scores,” which may not reflect accurately on how weak the bones actually are. Consequently, CLL patients may be developing Osteoporosis, or may have Fragility Fractures, unaware of their weak bones. Dr. Stevens spoke of a high occurrence of Compression Fractures found in CLL patients. I’d like to ready my body for whatever comes down the pike. 😎

[Gardengirl44 in reply to TruthJunkie]

i agree. I take extra vitamin D but no to the calcium. I will get my levels checked but I agree with you on that.

[TruthJunkie in reply to Gardengirl44]

Gardengirl44– I’m afraid that you didn’t watch the video, or you didn’t read my response accurately. Dr. Stephens recommends taking Calcium supplements, so I will continue to take them (600 mg. Twice per day). Stay well.

[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

[Gardengirl44 in reply to Smakwater]

I love tonic. i'll try that. BTW I may cheat and have some gin.

[Smakwater in reply to Gardengirl44]

Only from the Top Shelf.

[Gardengirl44 in reply to Smakwater]

lol

[Deilginis]

some above have mentioned low iron. I had normal iron before 1 yr V&O, afterwards it was 8. So it seems that’s a side effect of treatment for some of us. Any info on the known effects of low iron (other than fatigue) anywhere?