[ray]

multiple myeloma igd

by ray on Mon Mar 18, 2013 3:46 pm

Hi

My name is Ray and I live inTasmania, Australia. Eight months ago I was diagnosed with multiple myeloma IGD and commenced therapy with Thalidomide and dexamethasone. Intially, I enjoyed a good response, but with a later decrease of dexamethasone after two months, my IGD levels shot up. I have now been prescribed Velcade, cyclophosphamide and dexamethasone but my IGD quantitation has soared to a very high level, possibly impacting on my having a stem cell transplant. I have been on my current medication regime for two and a half months (3 sequences). Has anyone else experienced this and what was, or can be done, to help rectify the problem? Can a ASCT still be carried out despite high IGD levels?

[TerryH]

Re: multiple myeloma igd

by TerryH on Mon Mar 18, 2013 10:15 pm

Hi Ray,

Welcome to the forum. Sorry that myeloma has brought you here.

I don't think it will make a big difference, but, just in case ... What's the dose and dosing schedule of the Velcade you're being given?

Also, is the Velcade being given to you by infusion or by subcutaneous injection?

I ask about the dosing simply to check whether you are being given the most intense dose possible for myeloma patients.

For example, Velcade is sometimes given just once a week instead of the twice a week it originally was recommended to be given.

A second possibility to consider is to find out whether your doctor will consider giving you Biaxin (the antibiotic clarithromycin) along with the Velcade, cyclophosphamide, and dexamethasone (VCD) you're already being given.

I know that Biaxin is typically given together with an imid (Revlimid, thalidomide, or Pomalyst) along with dexamethasone. But I think the primary effect Biaxin has in terms of its impact on myeloma is in increasing dexamethasone's ability to fight myeloma.

So, theoretically, Biaxin also could improve the efficacy of the regimen you're already receiving.

If you try the Biaxin along with the VCD you're currently receiving, you and your doctor should pay a lot of attention to the possibility of side effects the first week or two you take the Biaxin along with the other drugs. The combination hasn't really been tested, so the approrpriate dosing is uncertain.

I would particularly watch out for any signs the modified regimen is having a negative effect on your heart function.

Note that I'm not recommending that you try either Kyprolis or Pomalyst because I'm assuming that you don't have access to either of those drugs in Tasmania. If that assumption is wrong, then you also should consider one of those drugs.

Best of luck to you.

[LibbyC]

Re: multiple myeloma igd

by LibbyC on Tue Mar 19, 2013 5:08 am

Hi Ray,

We're nearly neighbours! I live near Ballarat in Victoria.

Are you being treated in Hobart? Is there a possibility of you being treated in Melbourne (I know the travel would be a pain)?. The reason I ask is because my levels were considered "too high" for a donor stem cell transplant (that was two years ago) but the specialists I saw in Melbourne decided to give it a go. Thankfully it worked. If you would like to know more send me a private message with your phone number or I can send you mine.

All the best,
Libby

[Dr. Peter Voorhees]

Re: multiple myeloma igd

by Dr. Peter Voorhees on Mon Apr 15, 2013 1:23 am

Dear Ray,

You have had some very good suggestions. However, I would caution you about the use of Biaxin with Velcade. Biaxin inhibits or blocks the function of the enzyme responsible for detoxifying Velcade in the liver. If you were to take biaxin with your Velcade, you could develop severe side effects from the Velcade such as more severe neuropathy.

It is felt that biaxin enhances the effect of dexamethasone in much the same way -- you wind up getting exposed to a higher dose of dex due to your liver's inability to clear it effectively in the face of the biaxin. In my experience, dex-related side effects get worse on biaxin, supporting this hypothesis.

A second opinion about transplant would be highly reasonable. If available, a pomalidomide- and/or carfilzomib-based strategy would be good options in the meanwhile.

Good luck!

Pete V.

[kuantinglin]

Re: multiple myeloma igd

by kuantinglin on Thu May 16, 2013 11:23 am

Ray,

it's been 2 months. Did you go through ASCT?

I lived near Syracuse, NY and also had IgD multiple myeloma, I had my ASCT on May, 2012. Do you know your IgD level? Mine is 21400 mg/L before ASCT and after ASCT it dropped to 1020mg/L. My doctor is very happy about the improvement. Okay, all the secret was out for you to compare.

KT