[lmorden]

IGD & relapsing - stay w/Revlimid or try something else

by lmorden on Wed Jul 25, 2012 5:24 pm

Hi
I don't see very many postings of patients with IGD. I have the IGD strain of multiple myeloma. I was diagnosed Oct 2008 & had a stem cell transplant (auto) May 25, 2009 at the SCCA in Seattle WA. I have been on Revlimid for maintenance. Recently my IGD counts have been going up so my local oncologist said that more than likely I am replasing. He is not a Myeloma specialist just an oncologist for all types of cancer. We don't have a lot to choose from here in Hawaii. My oncologist I think is very good & normally checks things out. He indicated now that I can stay on Revlimid at the 25 mg dosage or possibly go to Velcade. I have read so much & attended the IMF phone call recently where many doctors are putting their patients on a cocktail of drugs. I mentioned this to my oncologist but he was more in the thinking of staying with just one drug. I'm not sure what to do and looking for suggestions.

Here are my IGD counts for last few (he used to do them every quarter but now it's monthly):
1/13/11 12
4/20/11 20
7/14/11 24
10/26/11 35
2/21/12 54
3/23/12 66
4/24/12 120
5/22/12 124 - went on higher dosage of Revlimid 25 mg
6/20/12 111 - higher dosage of Revlimid 25 mg
7/19/12 149 - was not on Revlimid this month because my WBC fell to 2.9, it's now back up to 5.20

Thank you for your help.
Lori

[lmorden]

Re: IGD & relapsing - stay w/Revlimid or try something else

by lmorden on Wed Jul 25, 2012 5:36 pm

Sorry - I keep typing RELAPSING as replasing. So if you see replasing - it means relapsing.
Lori

[kuantinglin]

Re: IGD & relapsing - stay w/Revlimid or try something else

by kuantinglin on Tue May 14, 2013 9:22 am

Hi, Lori,

It's been a while, are you still there?
What is the unit of your IgD count? I also have IgD multiple myeloma, but my IgD level is reading like this:

11/28/2011 30400
2/3/2012 19400
4/9/2012 21400
5/30/2012 1020 ASCT on 4/30/2012
6/8/2012 1200
8/13/2012 1300 on Revlimid 5mg daily 8/29/2012- 9/17/2012
11/19/2012 1470
1/16/2013 1310
3/13/2013 1160 back on Revlimid 5mg daily 3/15/2012-3/16/2012
5/8/2013 967
normal <179

The unit is mg/L
I cannot take Revlimid because of a sever reaction: my head swelling up. It looks like your number is small. I started to take certain mushroom since November and you can see the number is dropping. Currently I don't take any med. I asked my doctor and she said she didn't research on the alternative method. She is pretty happy about the improvement and agreed to off all the meds.