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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Mom not responding to Velcade

by kbev on Mon Mar 31, 2014 7:03 pm

Hello all - My mom has been on a cycle of Velcade only for one month. Test results show her serum kappa level is at 77.4. It was at 75.0 last month. Her B2M went from 5.23 in Feb to 5.31 on today's test.

Not a huge increase, I suppose, but still concerning. Does it take Velcade a while to work?

Her doctor is having her skip this week for treatment, will do another next week, then re-test the following week to see if there is improvement.

There are some small positive changes. Her creatinine is better, and her kappa/lambda light chain went from 2.93 to 2.30.

We aren't sure what all this means. It doesn't look good to me, but I am not sure if we are having high expectations to see improvement in a month when it actually will take longer.

Thank you for any advice.

kbev

Re: Mom not responding to Velcade

by Nancy Shamanna on Tue Apr 01, 2014 8:59 am

Hi kbev, Usually 'cycles' of induction chemotherapy (as it is known, whether or not it leads to an ASCT) are given for at least four cycles, or more likely six cycles or more. Thus probably your doctor is waiting on the results of more cycles than one.

I hope that your mother's counts start trending for the better soon. Best wishes!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Mom not responding to Velcade

by TerryH on Tue Apr 01, 2014 12:45 pm

Hi kbev,

Is this your mother's first treatment for myeloma, or has she been treated with anything else in the past?

Also, is she receiving anything else along with the Velcade for her treatment? I'm assuming that she's also receiving a steroid, such as dexamethasone or prednisone. Is that correct? What about something else, such as Cytoxan or Revlimid?

TerryH

Re: Mom not responding to Velcade

by Mary H. on Tue Apr 01, 2014 5:38 pm

I am in a similar situation as kbev. My mom just started Velcade this past month. She is 84 years old and was diagnosed in late February with full blown multiple myeloma. She is also taking dex. So far she has shown no improvement and is getting weaker each week. I am also wondering if the Velcade takes a while to work.

Mary H.

Re: Mom not responding to Velcade

by Brian O on Tue Apr 01, 2014 6:39 pm

Don't think I noticed much change after one cycle of Velcade. But by cycle 4 I was going downhill, but all the blood tests showed that it was working. So have a bit of patience.

In our group some find Velcade has very few side effects and others find it hard to take. Just take it as it comes!

Brian

Brian O

Re: Mom not responding to Velcade

by kbev on Tue Apr 01, 2014 11:50 pm

TerryH, she was just diagnosed last month. She has received no other treatment. No, she is not receiving anything other than Velcade. She also has rheumatoid arthritis, she has had a heart attack, and has high blood pressure as well. She was treated with high dose steroid for RA and had a horrific response to it. I think this is why they have not or will not give her dex.

I spoke with my dad for clarification today. He said they are going to do one more month just on Velcade, then see how it's doing. He mentioned adding in a pill if it's not working. I assume Revlimid -- the doctor spoke about that when I was at the meeting.

She is experiencing very few side effect with Velcade. We were hoping it would work. She has so many issues with RA, I would hate to see more bad ones with a new med.

kbev

Re: Mom not responding to Velcade

by cindylouise on Wed Apr 02, 2014 7:06 am

If it helps, my husband was also not able to take steroids with his treatment. He did almost 6 cycles of Velcade, and Cytoxan infusion. His treatment stopped somewhere in the sixth cycle due to neuropathy from the Velcade. He has had a complete response and is in remission now! We were scheduled for transplant but will be unable to proceed due to cardiac issues. His cardiac issues were extreme prior to treatment, no one is certain if treatment made this worse. At this point tho, we are continuing with Zometa, and no maintenance.

I guess I just wanted you to know there are more options for your mom still. Don't give up hope.

cindylouise

Re: Mom not responding to Velcade

by kbev on Thu Apr 03, 2014 9:02 am

Thank you Cindy!

My mom is not a candidate for transplant we already know that.

I haven't given up hope, she is not handling it well. She would rather not know anything and has expressed that to us all. This makes it very difficult, combined with her GP telling her that people can live with this for decades. That may be true, but the effect has been that when she got poor results she is now doubting her oncologist who is highly regarded, and we think doing a really good job. He is handling her other medical issues and trying to provide her a quality of life. She was told by him not to put much emphasis into first month but she didn't seem to hear that.

Hopefully next month will show improvement.

kbev

Re: Mom not responding to Velcade

by Dr. Edward Libby on Sun Apr 06, 2014 8:53 pm

Hello from gray Seattle kbev,

It takes 2-3 cycles of therapy to see a response to Velcade (bortezomib). If the Velcade is truly being used alone, then the chances of a response are reduced. Steroids are combined with Velcade for the vast majority of patients. Steroids are themselves a form of treatment for myeloma. When combined with other drugs like Velcade, they have a synergistic effect.

I would try to use steroids in your mom's case, but start at a low dose and increase as tolerated. I have never treated a patient with newly diagnosed myeloma with Velcade alone. Hematologist/oncologists often use the steroid dexa­metha­sone for multiple myeloma, but older patients seem to tolerate a different steroid (prednisone) better. So using prednisone is another option.

I wish your mom the best of luck with this. Almost all patients do respond to treatment, although sometimes different drugs must be tried.

Dr. Edward Libby
Name: Edward Libby, M.D.
Beacon Medical Advisor

Re: Mom not responding to Velcade

by Dr. Peter Voorhees on Thu Jun 26, 2014 7:14 am

Dear kbev,

A couple of questions:

1) What are the units of measure for the kappa light chains levels you are providing - mg/L or mg/dL?

2) What were the circumstances leading to the diagnosis of myeloma? What were the symptoms (worsening anemia, high calcium levels, kidney problems, bone lesions)? What was the burden of disease in the marrow?

Thanks!

Pete V.

Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor


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