[SandyR]

Getting hit with a two ton brick

by SandyR on Mon Oct 06, 2014 5:08 pm

I am 61 yr old and up until July 2012, I was reasonably healthy. I am a social worker by trade but my hobby / business was breeding and selling puppies. We also were running a boarding kennel and Doggie Day Care. All of which takes a lot of work.

In the spring of 2012, I started to have some back problems. I went to see my chiropractor but it didn't give me a lot of relief. In my usual way, I just kept going thinking it will get better if I give it a rest. Of course, our business didn't allow a lot of rest.

By the end of June, I started to experience flu-like systems and had no energy. We always take our grandkids to the beach in July, and I did not want to miss it. So I hung in until after our vacation.

I then went to see my GP who sent me right to the hospital. My kidneys were failing, I was dehydrated, I had five disc fractures, a fractured rib, and a week later was diagnosed with multiple myeloma. My world as I knew it fell apart. My family also fell apart. I have always been the one that did everything, and here I was in the hospital flat on my back.

As soon as I was discharged from the hospital, I started on CyBorD (cyclophosphamide, Velcade [bortezomib], dexamethasone). After the first round, I came down with the shingles. Due to my lowered immune system, I continue with post hepatic pain.

I had 5 cycles of CyBorD, and then met with the myeloma specialist at Penn to talk about a stem cell transplant. We decided that in January 2013, we would start the process. I started to have some vision problems and ended up at Wills Eye Hospital in January for a diagnosis. Again, due to my suppressed immune system, I developed toxoplasmosis in my left eye. Stem cell transplant was then postponed until the infection in my eye was cleared up.

I received a couple of Velcade shots to hold me over, and the stem cell collection and transplant happened in April 2013. I developed GVHD (million to one chance) and stayed in the hospital for 30 days.

Once my 100 days were up, I was started on RVD (Revlimid, Velcade, dexamethasone) for two cycles, and I developed shortness and breath and was switched to 15 mg of Revlimid until December 2013, when my platelets dropped and the Revilmid was discontinued. Also during all this time, I had one infection after another with two hospitalizations for pneumonia.

I achieved complete remission (CR) with the stem cell transplant and have been drug free since December 2013. Since discontinuing the Revlimid, I have continued to gain strength and stamina and continue in CR. My back is my limiting factor and reminds me on a regular basis that the myeloma has changed my life forever.

I have been monitoring the Beacon and have gained some wonderful insight and support, it has just taken me awhile to introduce myself.

[Multibilly]

Re: Getting hit with a two ton brick

by Multibilly on Mon Oct 06, 2014 5:26 pm

Sandy,

Welcome to the forum.

What a difficult journey! I am glad I read the entire thread to see that there was a pony waiting for you at the end of all this.

You got GVHD from an auto transplant? I didn't even know that was possible. I'm trying to understand how that could even happen? Do you still feel the effects of the GVHD?

Last edited by Multibilly on Mon Oct 06, 2014 6:03 pm, edited 1 time in total.

[Nancy Shamanna]

Re: Getting hit with a two ton brick

by Nancy Shamanna on Mon Oct 06, 2014 5:50 pm

Thanks for introducing yourself, Sandy.

I hope that your back problems improve. I am sure you must be taking bisphosphonate treatments for that, or have done so. You have been through a real ordeal, hopefully that is in the past now and you can get to a new normal.

Glad you enjoy reading the Beacon too. I think we can gain mental strength from interacting with others online!

[SandyR]

Re: Getting hit with a two ton brick

by SandyR on Mon Oct 06, 2014 6:28 pm

Multibilly,

My myeloma specialist says that it is a million to one chance for GVHD with an auto. But getting shingles with the first round of Velcade was not common, and my myeloma specialist never saw toxoplasmosis of the eye. So I have had a lot of million to 1 things happen in this journey. As far as the GVHD, I still have loose stools but it is getting better.

[SandyR]

Re: Getting hit with a two ton brick

by SandyR on Tue Oct 07, 2014 4:15 pm

Nancy,

Thanks for your support. I am getting Zometa every three months, which I am sure is helping, and I am exercising to strengthen the muscles in my back.

[mikeb]

Re: Getting hit with a two ton brick

by mikeb on Wed Oct 08, 2014 10:19 am

Hi SandyR,
Wow! You sure have been hit with a 2-ton brick. Maybe even 3 tons! I'm glad to hear that you are in CR now and things have stabilized to the "new normal" for you. Here's hoping you stay in CR for a long time.

You mentioned that you are being treated at Penn. Do you know about the Philadelphia Multiple Myeloma Networking Group (http://philadelphia.myeloma.org)? They have monthly meetings, most with guest speakers. It's a very good group of folks, just like here on the Beacon, in case you'd like some face-to-face contact with folks who know what it's like to go through a lot of the things you've experienced.

Mike

[Multibilly]

Re: Getting hit with a two ton brick

by Multibilly on Wed Oct 08, 2014 10:33 am

BTW, to understand the phenomena of GVHD in auto transplants, you can google on AutoGVHD or Auto-GVHD.

See:

A Batra et al, "Autologous Graft versus Host Disease: An Emerging Complication in Patients with Multiple Myeloma," Bone Marrow Research, 2014.

J Kline et al, "Autologous graft-versus-host disease: harnessing anti-tumor immunity through impaired self-tolerance," Bone Marrow Transplantation, 2008.

I never would have guessed that this could occur as a result of an auto transplant.

[NStewart]

Re: Getting hit with a two ton brick

by NStewart on Wed Oct 08, 2014 10:24 pm

Auto GVHD is very interesting. I likely had it after my transplant. About 28 days post transplant, I began to develop a rash on my face that quickly progressed to an all over body rash that drove me crazy. At the time, my oncologist thought that it might be a graft vs myeloma response, which would be good even though it was extremely distressing to me.

I was sent to a dermatologist who couldn't figure out what it was, but prescribed a steroid ointment to use to control the rash. In addition, I was told to take Benadryl to help with the itching.

Both the steroid and the Benadryl helped to manage the rash and it gradually resolved. But, as soon as I stopped both medications, the rash returned. It took about 4 months for the rash to gradually disappear. It returned periodically during the first year post transplant. Since that first year I haven't had any problems with the rash returning.

So, Sandy, I commiserate with your experiences. I ditto Mike in inviting you to come to the monthly PMMNG meetings. The next one is this coming Saturday at 1:30 at the Ralston House, 36th and Chestnut St., Phila.

Nancy in Phila

[Boris Simkovich]

Re: Getting hit with a two ton brick

by Boris Simkovich on Thu Oct 09, 2014 1:02 am

Allow me to chime in as well, Sandy, and welcome you to the forum. I'm glad to hear that you've found The Beacon to be a useful resource thus far.

For those landing here due to the discussion of auto GVHD, I thought I would mention that Beacon Medical Advisor Dr. Ken Shain shared some perspectives on it several years ago in a discussion about a related topic, engraftment syndrome. Here's a link to the discussion thread with his postings:

"Engraftment syndrome," Beacon forum discussion started Apr 22, 2011.

The Beacon also published a news article about engraftment syndrome last year,

"Older Myeloma Patients Treated With Novel Agents May Be At Increased Risk For Engraftment Syndrome After Transplantation," The Myeloma Beacon, Jul 12, 2013.