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

Re: Starting Velcade - experiences, tips, responses?

by Bonnie on Wed Jan 21, 2015 11:05 am

I was diagnosed and began treatment in April 2014. When my doctor began my treatment, I was on dexamethasone for the first four days of my Revlimid 25 mg, which I took for three weeks, then a week off before resuming these two. Meanwhile, I received the Velcade injections in my abdomen once a week. Also was receiving a Zometa infusion once a month.

Other than redness at the injection site for Velcade, and later some skin peeling in the abdominal area, I had no noticeable reaction. I did not have peripheral neuropathy. I was dealing with sciatic nerve pain from encroachment of the sciatic nerve (solitary plasmacytoma of sacrum). Over time, with continued treatment, that went away -- thankfully.

I was switched to maintenance Revlimid 10 mg after six months, and Velcade injections were stopped at same time. I continue to get Zometa infusion once a month.

Thankful for all others who posted on this forum. Very helpful comments.

Bonnie
Name: Bonnie
Who do you know with myeloma?: myself
When were you/they diagnosed?: April, 2014
Age at diagnosis: 73

Re: Starting Velcade - experiences, tips, responses?

by K_Shash on Wed Jan 21, 2015 11:52 am

Bonnie,

Your post helped me indirectly and answered my questions about the levels of maintenance therapy that I had posted on other threads. Thanks.

Am I right that you went from the induction phase of 6 months to the maintenance therapy? Since you started your treatment in April 2014, which lasted for 6 months, you must not have had any transplant.

If at all possible, can you share your pre- and post- treatment blood and urine test results (IgG's, free light chain levels, etc.), before and after the 6 months of induction treatment?

Today is the first day of my 6th week of my induction therapy. I am on dex (20 mg) and 15 mg Revlimid (3 weeks on and 1 week off) and the weekly Velcade shot (of about 2.0 level). This has worked very well for me. I had the rather unusual case of all the IgG protein leaking into the urine.

My urine protein has already come down from around 200 mg/dL to 9.9 mg/dL, protein / creatinine ratio came down to 0.1 from 2.0; both after 4 weeks and 4 days. My oncology team, my family, and I are all overjoyed that my kidneys would remain fully functional. I have opted to skip Zometa completely and have not had any need for any anti-nausea drugs. My x-rays showed quite a few lesions but they were small and minor enough that my oncologist cleared me to continue all my physical activities, drug effects permitting.

Also my kappa free light chains came down from 1,072 to 127 after 3 weeks and 4 days into this induction phase. I hope to be at the complete remission level in 3 more weeks, but I am not even sure what those are! I am also doing well and my hemoglobin and RBC's and WBC's are below the "normal range" but not near any danger levels.

I assume you are in a complete remission and I wonder how that was defined. I am not at all keen on a transplant and wondering whether to even harvest my stem cells.

Any concrete data you can provide me would be of immense help to me with my two major questions: when to expect when switching to the maintenance phase, and whether the transplant is for me, ever?

All the best wishes from another myeloma battler.

K_Shash

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: Starting Velcade - experiences, tips, responses?

by liana on Thu Apr 23, 2015 2:46 am

Can you provide a link to any of the studies? Thank you!

Steve wrote:

Studies have shown that once per week Velcade is just as effective as twice!!!

liana

Re: Starting Velcade - experiences, tips, responses?

by Beacon Staff on Thu Apr 23, 2015 4:53 am

Liana,

See this article,

"Once-Weekly Velcade Is Equally Effective But Better Tolerated In Elderly Multiple Myeloma Patients," The Myeloma Beacon, Sep 28, 2010

and the study it discusses

S Bringhen et al, "Efficacy and safety of once weekly bortezomib in multiple myeloma patients," Blood, Aug 2010 (abstract with link to full text PDF of article)

Beacon Staff

Re: Starting Velcade - experiences, tips, responses?

by torimooney on Fri Apr 24, 2015 1:55 pm

Don't discount any of the above side effects. However, realize you may not get any of them as is my case.

I have been on Velcade subq for 2 1/2 yrs with virtually NO side effects and excellent results; I achieved a complete stringent response and maintain it. I am moderate risk with t(4:14) and t(14:16).

I have not had nor do currently I plan to have a stem cell transplant, given I am doing so well. I wish you the same success and tolerance of the drug as I've had.

torimooney
Name: tori
Who do you know with myeloma?: myself
When were you/they diagnosed?: apr 2012
Age at diagnosis: 64

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