[Cathee]

Dad in treatment, has some side effects, mom ill

by Cathee on Wed Mar 11, 2015 8:06 am

My wonderful dad has full myeloma. He is on Velcade and dex. He is 82 with a pacemaker.

Treatment started in late December. He is having skin rash near the radiation site (radiation for bone pain) and some other side effects, but they think it is shingles (Velcade side effect, I read here). One serious side effect – ejection fraction of heart dropping.

Any advice is welcome, but I have one specific question: Should he know if the treatment seems to be working? He has had no info on his M protein levels since the treatment began. Is this nor­mal / usual?

I live hours away but am going to visit again in a few days and will accompany to appointments, etc.

Please advise as to what info doctor should have and be sharing.

Thank you for having this forum.

[Multibilly]

Re: Dad in treatment, has some side effects, mom ill

by Multibilly on Wed Mar 11, 2015 8:31 am

Hi Cathee,

At a minimum, you would want to know the following both before the treatment began and what the current values are:

1. Serum M-protein levels (aka M-spike), as measured by a serum protein electro­phoresis (SPEP) test.
2. Serum lambda and kappa free light chain values, as measured by a Freelite assay.

The items above are pretty basic markers that one would monitor to judge response to treat­ment.

If he was anemic, had kidney issues, or was hypercalcemic prior to treatment, I would also be asking to see his hemoglobin, creatinine, and calcium levels before and after treatment.

All the test results are the legal property of your father. You should be able to ask for complete copies of all the lab reports and any imaging reports both before and after treatment. The lab re­ports will include all the information I mentioned. These test results may also be available online, but you would need to ask the treating facility about that.

Hope this helps a bit and wishing your pop a good recovery.

[Cathee]

Re: Dad in treatment, has some side effects, mom ill

by Cathee on Fri Mar 13, 2015 8:13 am

Thank you very much for the great reply. I will be down next week and will go to start a new cycle of Velcade with him. I believe a "cycle" refers to the re-starting after a rest period. Is this the correct term? He was unable to find M-protein on his lab work. I did ask about his platelets, which are very low. I believe they are too low, 50, and marked as LL on report. Based on guide­lines, this suggests not starting a new cycle until they are higher.

How can I bring this to the doctor's attention without alienating ?

The doctor won't be there when he starts the new "cycle" at the doctor's office, or he would not normally see her.

[Multibilly]

Re: Dad in treatment, has some side effects, mom ill

by Multibilly on Fri Mar 13, 2015 9:32 am

HI Cathee,

Your definition of a cycle is essentially right. If your dad is a newly diagnosed and is taking subcutaneous Velcade, chances are that he is on a 6-week cycle, which includes a couple of rest periods that are built in. But you can easily check at the appointment just what kind of cycle your dad is on.

I see your concern about the platelet count from the link you provided:

"Prior to initiating any cycle with Velcade in combination with MP, platelet count should be at least 70 x 10**9/L and absolute neutrophil count should be at least 1.0 x 10**9/L"

But note that this warning is when Velcade is combined with melphalan. But there is a similar warning posted here for just Velcade (bortezomib).

A few thoughts off the top of my head on how to deal with this:

1. Print out the warning and empower your dad to raise this concern himself with the doctor.
2. Find out who the doctor's assistant nurse is and contact her with your concern. The doctor's assistant nurse can be a very great resource to you and your dad. He/she can also often be the easiest and fastest way to get a question or concern to the doctor.
3. Contact the doctor directly. I wouldn't be worried about "alienating" the doctor with any concerns that you might have.

Others who have actually been down this road may have some better ideas.

[Dr. Prashant Kapoor]

Re: Dad in treatment, has some side effects, mom ill

by Dr. Prashant Kapoor on Sat Mar 14, 2015 12:46 pm

Hi Cathee,

I am sorry to hear that you father is not tolerating Velcade well. I agree with Multibilly's assess­ment. Additionally, I would like to emphasize that all patients who are started on a Velcade-based therapy be simultaneously started on a medication such as acyclovir (Zovirax) or vala­cyclovir (Valtrex) to prevent shingles from occurring. Velcade can lead to reactivation of the herpes virus that causes shingles.

Dropping of ejection fraction of the heart can be an uncommon side effect of Velcade. In such a scenario, a non-Velcade-based therapy should be considered.

Hope he feels well soon.

Prashant

[NStewart]

Re: Dad in treatment, has some side effects, mom ill

by NStewart on Sat Mar 14, 2015 5:36 pm

In addition to all of the suggestions and information that you have been given, I have one more. If shingles is suspected, your father should see a physician ASAP, not one week from now. The sooner that shingles is diagnosed and treated, the better the long term outcome will be. People who delay with getting shingles treated, with an antiviral a few times a day, risk the awful long-standing nerve pain that can be the result of shingles.

Your father can go to his primary doctor, the oncologist, or the ER for diagnosis and initiation of treatment. Any side effect that your father experiences at this time in his myeloma treatment should be reported to the oncologist immediately. Don't worry about offending or being a pain with your oncologist. That's what s/he is there for.

I hope that all gets better. When your father sees the doctor, and you are there, ask lots of ques­tions, get results from all lab work, etc. The better that you, your father, and your mother are in­formed, the better his treatment will be.

Nancy in Phila