[Cmouli]

Pain and weakness during Velcade-dex treatment

by Cmouli on Fri Jan 02, 2015 3:58 pm

Hi,

I am looking for advice and insights to help my 80 year old dad.

My dad is on 20 mg of dex and 2 mg of Velcade. His treatment started first week of November. He has completed 8 weeks of treatment. We stopped this week for a small break.

He had been relatively pain free since the onset of chemo. He has had sleeplessness, dry mouth, and vomiting during the chemo.

However, he now has pain in his legs and extreme weakness. Not sure if the pain is related to peripheral neuropathy. Seeing him withering in pain and sleepless is unbearable.

Does this pain and weakness go away once we stop chemo? Or is the pain due to stopping chemo for one week?

He still has 4 more chemo sessions to go through. Not sure if going through the 4 more chemo sessions will cause more damage to his leg strength and pain.

Any insights and suggestions are very appreciated.

Thanks
Anu

[cindylouise]

Re: Pain and weakness during Velcade-dex treatment

by cindylouise on Sat Jan 03, 2015 7:32 am

I'm sorry you and your Dad have to go down this road.

My first thought was, have you brought the pain and weakness in his legs to his doctors attention?

It could likely be neuropathy, but there could be other issues going on that his doctor would be able to help with. And there are meds that can help with neuropathy, if that is what it is.

Oncologists seem to me to be the most responsive to their patients of any doctors out there. They really want to know if you are having problems.

Good luck to you going forward.

[Dr. Ken Shain]

Re: Pain and weakness during Velcade-dex treatment

by Dr. Ken Shain on Sat Jan 03, 2015 3:48 pm

I am sorry to hear that your father is not tolerating therapy well. Generally, therapy is well tolerated even in octogenarians.

It is somewhat difficult to make definitive remarks without knowing your father's pre-existing comorbidities (medical problems other than multiple myeloma), response, and risk assessments.

However, it sounds like bortezomib (Velcade)-induced peripheral neuropathy is a major contributor. Dose reductions, alterations in timing and method of delivery (e.g. dropping from 1.3 to 1.0 mg/m2; from twice a week to weekly; IV to subcutaneous delivery) can improve tolerance.

There may be a bit of dex toxicity there, too. It can cause proximal muscle weakness and altered sleep-wake cycles that can have marked effects on elderly patients. Decreasing or stopping dex may help significantly. In the elderly (>75 or frail), single-agent bortezomib or lenalidomide (Revlimid) are quite reasonable (see below).

Additionally, improved supportive care – better use of as needed anti-nausea pills, hydration – may help.

One could also consider changing therapy altogether. Revlimid (lenalidomide) +/- dex is quite reasonable.

Wishing you the best.

[Cmouli]

Re: Pain and weakness during Velcade-dex treatment

by Cmouli on Sun Jan 04, 2015 5:13 am

Thank you, Dr. Shain, and happy new year. I appreciate your taking the time to answer my questions.

My dad has no other pre-existing conditions, fortunately. He has no history of high blood pressure or diabetes. Nothing. He has had a medicine free life until this last 2 months. He was a very active man until November 4th 2014. We were told he has multiple myeloma and, since the treatment, he has been very weak and dependent on the walker.

My dad currently is on 2 mg Velcade and 20 mg dex weekly. He weighs about 112 pounds (51 kg) and is 5 ft 4 in (1.63 m).

The main concern is: Will he be able to walk after the 4 weeks of chemo? Or are these side effects permanent to stay on. Currently, I don't see the light at the end of the tunnel. I have a meeting with the multiple myeloma medical oncologists tomorrow.

Thanks once again Dr. Ken.

And thanks, Cindylouise, for your kind words.

Regards,
Anu

[Dr. Ken Shain]

Re: Pain and weakness during Velcade-dex treatment

by Dr. Ken Shain on Mon Jan 05, 2015 1:18 am

I would make sure that you and your father's multiple myeloma specialist or oncologist look into the potential links between the symptoms and drugs (dex or Velcade) and make adjust­ments (as discussed in prior post) to improve your father's tolerance. It is not "common" for Velcade to cause problems so quickly, but it surely can.

Velcade-induced peripheral neuropathy is generally reversible, if caught and addressed appropriately. Addressing it involves dose adjustments and supportive care, such as Lyrica (pregabalin), gabapentin, Cymbalta (duloxetine), narcotic pain relievers, and supplements such as L-glutamine, alpha lipoic acid, l-carnitine (I prefer L-glutamine). Unfortunately, it can take several months to improve and in ~30 percent patients may not get noticeably better.

However, I would also suggest that, if this is really in the midst of the first 4 doses of therapy, that myeloma-associated issues be considered. Spinal cord involvement from multiple myeloma, or from associated compression fractures (collapsing of vertebral bodies secondary to weakened bones), could be sources of the problems.

[Cmouli]

Re: Pain and weakness during Velcade-dex treatment

by Cmouli on Mon Jan 05, 2015 12:46 pm

Thanks for the time, Dr. Shain. I am going to meet with the myeloma specialists tomorrow with my dad.

Hopefully, some of the side effects are reversible and are not due to spine issues (my dad does have lytic lesions in the d6-d9 area).

I guess we will have to patiently wait and take it one day at a time.

Thanks,
Anu

[Cmouli]

Re: Pain and weakness during Velcade-dex treatment

by Cmouli on Tue Jan 06, 2015 12:06 pm

Hello everyone,

Just to update everyone, so far my dad has done 8 chemo sessions of dex and Velcade. After the 8 sessions, his M-spike is at 0.85 and plasma cells at 3% (down from 40%). He has now been asked to stop his chemo temporarily after we saw the medical oncologist team today.

Since he has severe muscle weakness, they have asked us to see a neuropath and come back to them after the neuropath checks him.

So, for now, we have stopped the chemo after 8 weeks to take care of the muscle weakness.

Thanks,
Anu

[paula219]

Re: Pain and weakness during Velcade-dex treatment

by paula219 on Sun Jan 17, 2016 4:01 pm

In my case, I found that that the neuropathy went away several months after the treatment stopped. You should consult your doctor and monitor the blood glucose levels. I suspect that some of the neuropathy was actually related to Velcade-induced blood glucose changes.

I also found that walking reduced the symptoms, even though at times it was difficult.

[cdnirene]

Re: Pain and weakness during Velcade-dex treatment

by cdnirene on Sun Jan 17, 2016 11:09 pm

Anu,

I had muscle weakness when on Velcade / dex. I could walk with a cane for 5 or 10 minutes, but for longer walks I used a walker.

I had 36 treatments, then stopped. Two months later my walker was stored away and I didn't even need my cane.

I think it was the dex that caused the problem. Oddly enough, I didn't have any of the common side effects of dex – i.e., I had no problem sleeping and was never wired up.