[Lizzie]

High risk myeloma? If so, please share your story.

by Lizzie on Thu Jan 30, 2014 10:56 am

Recently diagnosed with high risk myeloma based on FISH (1q1gain, del13, t14;16) and I'm garnering all of my internal strength to remain positive. I, however, could greatly benefit from hearing some stories from people with similar diagnoses and what their experience has been.

Have therapies worked better than expected? Have therapies failed? Was SCT [stem cell transplantation] worth it - auto or allo?

I'm trying to keep in mind that statistics are just statistics and this disease is very individualized. I just hate this "high risk" title, although most recent therapies have successfully downgraded t14;14 to "intermediate risk", so that's always encouraging.

I'm so thankful for this community. It has been a great source of strength and support (mentally and emotionally).

Sending positive vibes to all of you. We are in this fight together. Winning is still an option!

[svbriggs]

Re: High risk myeloma? If so, please share your story.

by svbriggs on Thu Jan 30, 2014 11:55 am

Hi Lizzie,

I was diagnosed on October of 2012 with dreaded high risk myeloma. My oncologist on my first visit was convinced that I had MGUS as my only symptom was anemia and slightly elevated protein levels. Further testing revealed d17, t(14,16) and hyperploidy.

The diagnosis threw me into a panic. I had always been the health nut of my family and my previous blood work had been perfect. I had never been on any medication, ever! My first visit with a myeloma specialist in Tampa was also disheartening, as she explained that overall survival statistics are not great for subgroup.

I was blessed with a great local oncologist who urged me to fight (I am in my 50's but I am physically much younger). I started on Velcade, dex and Revlimid and tolerated the treatment well with no side effects other than occasional fatigue. I tried to eat the best diet possible, emphasizing foods with anti-inflammatory and anti-cancer properties. I also added in many of the supplements that other bloggers have used on this site (taking precautions not to use anything that would block the Velcade's effect).

In the 2 months before I started treatment my levels went through the roof, but in 3 months I obtained a VGPR. I had an allo-transplant using my brother's stem cells. (My brother may be the oldest stem cell donor on record as he is a healthy 75 years old). My donor's age was not ideal, but after searching through 15 million potential donor's, he came up as my only match.

I finally achieved full remission on Thanksgiving day and I continue to improve every day. I luckily did well with the transplant and although I have mild chronic GVHD of the mouth, it is slowly resolving. The only bad outcome of the transplant was that I lost my job which I loved as they could only hold my position open for 3 months.

I am taking the time out to regain my health and I may reenter the job market this fall, if all remains stable. Although there is no cure and I don't know how long I will be in remission, hopefully there will be more targeted treatments, if not a cure, down the road.

You are young which definitely works in your favor. Hang in there Lizzie. Hugs and blessings.

[Lizzie]

Re: High risk myeloma? If so, please share your story.

by Lizzie on Thu Jan 30, 2014 8:22 pm

Svbriggs - Your story made my day! Thank you for giving me hope! May I ask where you received your transplant?

[WeatherNurse13]

Re: High risk myeloma? If so, please share your story.

by WeatherNurse13 on Thu Jan 30, 2014 10:18 pm

I was told I had an aggressive, rare form of multiple myeloma (plasma cell leukemia). It was when I met with the transplant team that they mentioned my chromosomal abnormalities (del 13, t14;16) that puts me in the high risk category.

My oncologist facilitated a complete response in 3 months and I had an autologous stem cell transplant the following month. The transplant doctor suggested an allo transplant but I had no donor. I have been taking Revlimid as maintenance since June and back to working part time as a nurse.

I had my one year anniversary of being in remission yesterday and will celebrate my SCT bday very soon. Hoping to celebrate many more!

[Mark]

Re: High risk myeloma? If so, please share your story.

by Mark on Thu Jan 30, 2014 10:20 pm

Hi Lizzie,

I was diagnosed as high risk in September 2010 in my early 40's. I had 90% plasma cells in my marrow, 3 compression fractures in my back, and had a fungal pneumonia - I was a mess!!!

I did 4 cycles of Velcade/Doxil/dex to get me a VGPR (10% plasma cells), an auto to a CR and than a myeloablative (full) allo transplant to a molecular CR in Spring 2011.

I currently have no GVHD and my quality of life is outstanding. I have taken no myeloma drugs since my allo - I only go once every 3 months for Zometa for my bones. Other than being 3 inches shorter due to the compression fractures and not being able to do squats when I exercise life is pretty much back to normal. So for me, the allo was 100% worth it - best decision I could have made.

Take note of this study and take note that high risk patients that have a sustained molecular CR can have long term drug free remissions.

"After a median follow-up of 6 years, overall 5-year progression-free survival was 29%, with no significant difference between del 17p13/t(4;14)-harboring patients and others (24% versus 30%; P = .70). The 5-year progression-free survival differed substantially according to the achieved remission: 17% for partial remission, 41% for CR, 57% for mCR, and 85% for sustained mCR. These results suggest that auto-allo tandem SCT may overcome the negative prognostic effect of del(17p13) and/or t(4;14) and that achievement of molecular remission resulted in long-term freedom from disease."

http://www.ncbi.nlm.nih.gov/pubmed/23078786

There are indeed high risk myeloma patients that can have a GREAT outcome. I agree with you that SVBriggs has a great a story.

Mark

[Terrilynnn]

Re: High risk myeloma? If so, please share your story.

by Terrilynnn on Thu Jan 30, 2014 11:05 pm

My guy had a small bump behind his lung. Within a month it was the size of a grapefruit. They operated to remove it and discovered 2 ribs were crumbling. So removed those two. The next day was in considerable pain in hip area. X-ray revealed broken hip. Operated and put rod in his leg to fix a fracture and plated his hip. During that operation his Neck broke. This was all within 7 days. 13 days later diagnosed multiple myeloma t4:14. One month later spinal compression and 3 vertebrates were gone. Operation to fix that broke his arm. That was July.

It's now almost February. No more broken bones. Getting Velcade twice a week and Revlimid daily. Tried to stop chemo in October to prepare for SCT. Within 5 days 3 large tumours on his back and one behind his eye. Radiation to the eye shrunk the tumour and he no longer gets break periods. Waiting on emergency list for sct.

Now the good news. He is walking on his own, his arm is close to perfect. He can see. Through all that no serious long term affects. He is very tired and spends his day resting but that is temporary. They say his disease is too aggressive and he won't go into remission but SCT will buy him some time at a reasonable quality.

But they said he would never walk. He would never use his arm. He would never see. And they were wrong.

Some days are hard. Set backs happens. But never lose hope. Even when they say there isn't much. The next days things can look better.

[Beacon Staff]

Re: High risk myeloma? If so, please share your story.

by Beacon Staff on Thu Jan 30, 2014 11:46 pm

Lizzie wrote: "Svbriggs - Your story made my day! Thank you for giving me hope! May I ask where you received your transplant?"

Lizzie - You can read more about Svbriggs's case in this discussion thread (particularly page 2 of the thread):

OK to be afraid of an allo transplant?

[Lizzie]

Re: High risk myeloma? If so, please share your story.

by Lizzie on Fri Jan 31, 2014 1:21 pm

Mark - What a great story ... Very encouraging! Can I ask:

1) Where did in have your transplant, and
2) What does molecular remission mean?

Thanks so much!

[Julie MM]

Re: High risk myeloma? If so, please share your story.

by Julie MM on Fri Jan 31, 2014 10:30 pm

Hi, I too was diagnosed with "high risk" myeloma. I still don't really understand what it means, but I do consider my treatments a success.

Here's a brief overview of my story:

I was diagnosed the day before new year's eve 2009. I was very anemic, weak, fatigued and my blood counts were dangerously low and high. But I was still working and living a normal life, so I was beyond shocked when I was diagnosed. I lived a healthy life (no smoking, drinking, drugs, etc and ate quite healthy!)

First bone marrow biopsy showed almost 70% cancerous plasma cells. I am IgA Myeloma and at diagnosis my beta immunoglobulin #s were over 5700. Fortunately my skeletal scan showed no bone lesions.

I did 6 months of 10mg Revlimid 3 weeks on, 1 week off, and 40mg dexamethasone, 4 days on, 4 days off, along with anti-shingles med Acyclovir and Mepron (anti fungal pneumonia med).

2nd bone marrow biopsy showed this brought my #s down to 10% cancer!

Then in prep for my autologous stem cell transplant, I did one high dose treatment of IV Cytoxan, and a few weeks of Neupogen in prep for stem cell harvest.

I was hospitalized at City of Hope (Duarte, CA) for the SCT. Had 2 days of high dose IV Melphalan chemo, then 3rd day, my stem cells infused.

Transplant was very successful, as my 3rd biopsy showed 0% cancer and full remission!!! (I did have a severe infection from my Hickman catheter when my immune system plummeted, but I had great care in the hospital, and was an inpatient for a month.)

I then did a year and a half of maintenance Revlimid at 5mg.

I had about 15 months treatment free, but it was discovered that I was coming out of remission during that time. 4th bone marrow biopsy showed less than 20% cancer this time.

I just began low dose treatment a few months ago of 5mg Rev, 3 weeks on, 1 week off, and 20mg Dex once a week. All is going great and my IgA #s are again dropping!

It's been 4 years I have been battling, and overall, I have a great quality of life, still work (part time now), and occasionally ride my horses!

I feel very fortunate for all the great medical care I have received!

I wish all you the very best in your treatments, and hope someone can let me know what "high risk" really means!

Julie

[LadyLib]

Re: High risk myeloma? If so, please share your story.

by LadyLib on Fri Jan 31, 2014 11:57 pm

My husband was labeled high risk as well. He had 4 cycles of Velcade, Dex and Cytoxan. He was 50% involved with kidney failure at diagnosis. After 4 cycles, he had less than 2% involvement and his kidney function stabilized (no dialysis ever). He had an auto in December of this year (5 months post diagnosis). He handled the Auto like a champ. He collected stem cells on Day 3 and Day 4 (enough for 2 transplants). He was never hospitalized post transplant. Had maybe 3 days of feeling "icky, kept his hair and his strength (exercised through it). He had tri port removed on Day 23 and is doing well now. We are at Day 32 post transplant. We are hopeful that his response will be good.