[Christina]

Introduction and Hi!

by Christina on Fri Jul 08, 2011 2:01 pm

I was diagnosed in June 2005. Like many ,it was such shock. I had a compression fracture t 10 a year and a half before. It was initially misdiagnosed as a pulled muscle,even though I couldn't stand up foe long. Then when I went to check on physical therapy, the compression fracture was discovered, but the doctor just said rest. So then a year later I wanted to check out kypoplasty(spelling probably wrong), had an MRI and let say the rest is history. I was 52 at the time and other than multiple myeloma have never had any serious disease. I did radiation , chemotherapy ,and then in march 2006 a sct. I had a complete remission for 4 great years. No chemotherapy except aredia every 3 months.
So then in march of 2010 I had a rib fracture and officially relapsed in June 2010 after my m protein went to .4 . Not real high but, still there. I went on rev and dex and after 9 cycles I am in
CR again. yeah. My onc and I decided to do a TFI and it is very nice.
I am grateful to be doing well and I greatly value everyone's in put, here and the myeloma list serve.
So that's my story.
Christina

[Indy Mike]

Re: Introduction and Hi!

by Indy Mike on Fri Jul 08, 2011 5:44 pm

Hi Christina, I am glad to hear you are back in remission. I am curious what TFI is.

I was diagnosed January 2011 just a few weeks before my 52nd birthday. I also had a compression fracture in the T5 verterbra but fortunately by the time the pain became significant it only took about 2 weeks for the shocking multiple myeloma diagnosis. Did your compression fracture cause you any neurological problems such as loss of sensation in legs? I can walk and have actually been walkiing up to 3 miles a day since my stem cell transplant in early June but it still feels uncomfortable.

Have you had any problems with the maintenace drugs?

Mike

[Christina]

Re: Introduction and Hi!

by Christina on Fri Jul 08, 2011 8:49 pm

Hi mike
No, I never had any neurological.problems from the compression fracture. But even today if I walk too much or clean house too much the T10 area bothers me.
I try to walk 1-2 miles. So you walking 3 is really great.
TFI is treatment free interval. Some. People don't want. To do that and prefer to go on a low dose of Revlimid. But I wanted to go off since the last 4 months I had no m protein detected.
I tolerated rev and dex pretty well. It is intense ,o f course , but you learn to manage.
Since you are still in your 100 days of waiting ( after the SCT), are you going to do rev dex as maintenance . It is now the protocol, whereas in 2006 it wasn't used yet.
I hope you achieve full remission.
Best,
Christina

[kdc]

Re: Introduction and Hi!

by kdc on Sat Jul 09, 2011 9:37 pm

Hello Christina and Mike...

I am new to this forum. Just learned yesterday that my MGUS has progressed to smoldering myeloma. I was surprised and stunned, but knew that i was probably high risk for progression due to the results of some of my earlier tests. Praying for a long asymptomatic period.

I am 52 y.o. and am participating in a clinical trial at NIH. I thought i would be in the MGUS group, but guess not. Hadn't had labs for one year, and bone marrow bx was at 15%, M-spike 1.3. I am comforted in reading your experiences. My grandmother had myeloma twenty years ago, and the approach to treatment has improved so much.

Walking is one of my hobbies as well, but not up to 3 miles/day. Have either of you found any specific nutritional plans to be beneficial. I have a lot of room for improvement in that department. I am actually a couple of pounds underweight, and am concerned that this condition will lead to more weight loss. I will probably start on supplemental shakes.

Thanks for sharing your stories and wisdom.

Kathy

[Ritz]

Re: Introduction and Hi!

by Ritz on Sun Jul 10, 2011 4:33 am

Hi Christina,
Very best wishes to you. I'm brand new myself to this forum and will do an intro of my own
later. It's 4:20 am and I've been awake since 1:15am (on my dex high) Once again all the best and hope that treatment plan works great for you.
Ritz

[Indy Mike]

Re: Introduction and Hi!

by Indy Mike on Sun Jul 10, 2011 1:36 pm

Christina, I don't see my oncologist again until the 28th but I think he does plan on starting me on a Revlimid maintenance program. I am a little uneasy about starting another drug as they all seem to have lots of side effects but its probably the best option and like you said it is the current protocol.

I have the more unusual form of multiple myeloma where no M proteins are detected. I had very high lambda free chains before my initial treatment began. I had a great response to Velcade/Dex and got the free chains and total plasma within normal ranges. I haven't had a bone marrow biopsy or free lite test since the SCT so not sure where I currently stand.

Take care

Mike