[Tracy J]

My Strange Story

by Tracy J on Tue Dec 23, 2014 12:11 am

Okay, I've been haunting this forum for some time now, and I finally have the emotional energy to introduce myself.

My name is Tracy. I live on the coast of Maine, though I've lived all over the US. I am 43 years old (diagnosed at age 42) and have a loving supportive husband and two children who depend on me at home -- a 15 year old son named Noah, and a 10 year old daughter named Tess. I am an Emergency Room doctor.

Here's the strange part. In 2011, my retired urologist father was diagnosed with AL (primary) amyloidosis. You know that multiple myeloma and amyloid are related, as they are both dysfuctions of the plasma cell. There was no sign of myeloma. He went to Boston Medical Center, where there is a dedicated amyloidosis center, and had an auto stem cell transplant (SCT), which produced very good partial response.

Then in 2012 I was also diagnosed with lambda AL amyloidosis. AL is not supposed to be inherited (there are other types of amyloidosis which are inherited, but not this one). Again, at that time I had no sign myeloma. It is extremely unusual for two first degree family members to both have AL amyloid. I also went to Boston Medical Center, participated in a clinical trial of Velcade before and during my auto stem cell transplant (I still have 14 million cells frozen there). I got a complete response. In amyloid, if there is complete response, no maintenance therapy is used.

I recovered almost completely - working in the ER, taking care of family and house, traveling, exercising.

Then this past May I developed reproducible bony tenderness to touch along my spine, which I knew was a red flag. I went straight to my doctor. One thing led to another, and I was found to have many bony lytic lesions, and a couple of sizable kappa restricted plasmacytomas, one in my sacrum, one in my ilium, and one in my right shoulder. Tiny tiny kappa spine on immunofluorescence on serum, but normal serum free light chains.

So here are the weird things:

1. I have both AL amyloidosis and multiple myeloma, but not at the same time
2. I went from one subtype to the other subtype
3. Both my father and I have AL amyloidosis
4. My remission from my first auto SCT was less than 2 years

What I can conclude from this is that, even though my type of myeloma (hyperdiploid) is known to be quite treatable, my plasma cells must be really messed up!

As far as treatment goes, the hardest thing to know is whether or not this kappa clone represents a new disease or relapsed plasma cell disease. After much research, talk, and discussion with my doctors at Dana Farber, we've all decided it would be safest to treat this as relapsed disease.

So, we have sort of concluded that another auto stem cell transplant would not be worth the risk and recovery.

I'm now on RVD [Revlimid, Velcade, and dexamethasone], finishing my 5th cycle. Last PET CT at the end of the 3rd cycle showed no metabolic activity of the tumors!

After talking with the allo transplant doctor at Dana Farber, and thinking and crying and talking about it for WEEKS, I've decided to pursue an allogeneic transplant. Auto is not a good option, and I'm only 43 years old. If there's a chance for me to see my kids to adulthood, I want to take it! After all that work to come to a decision, I can't find a matched donor. Boo.

So now I just continue with chemo while I wait for a donor.

And wait ...

And wait ...

[Mattias]

Re: My Strange Story

by Mattias on Tue Dec 23, 2014 6:04 am

Hello!

I have a situation close to yours. I´m 44 with two kids 10 and 12. My father had multiple myeloma diagnosed in 2009. The same year I was diagnosed with solitary plasmacytoma. In November 2013, I was diagnosed with multiple myeloma. Neither my father or me had/have AL. (Dad passed away in March 2013.)

I've been treated with local radiation and surgery for plasmacytomas in 2009 and 2011 (solitary, bone marrow biopsies were healthy and normal).

Since my myeloma diagnosis, I´ve been treated with four cycles of CyBorD [cyclophosphamide, bortezomib (Velcade), and dexamethasone], auto stem cell transplantation, two rounds of VRD and radiation. I'm in sCR [stringent complete response] and very lucky.

Should I relapse early, I would definitely pursue the possibility of an allo transplant.

I wish you the best!

Best regards, Mattias from Sweden

[cjwells]

Re: My Strange Story

by cjwells on Tue Dec 23, 2014 8:56 pm

Thank you for sharing. I think you are doing the right thing in pursuing the "allo". I have multiple myeloma and have had my stem cells harvested, but, as of now,my Velcade has me in PR. I had Revlimid / dex for my first treatment, with very little response (except to get a blood clot in my leg). Then I was on CyBorD and had good response. Now we are trying just the Velcade. I have my labs checked again next week.

My brother has non-Hodkins lymphoma. They say it was from Agent Orange, and it might well have been.

Best of luck and keep us posted.
Connie

[K_Shash]

Re: My Strange Story

by K_Shash on Thu Dec 25, 2014 11:00 pm

Season's Greetings, Tracy J.

Thank you so much for the detailed insight you gave me just before I started my chemo (in my discussion thread, "K_Shash's RVD induction therapy experience.")The Benadryl definitely worked for me on both the nights ofdDex and Velcade. I only wanted to let you know that the air bubble mentioned in Dan's comments, which I was directed to by Multibilly, seems to have helped. As I reported on my thread earlier today, my chemo nurse (who gave me the Velcade shot yesterday) was familiar with the technique and she told me that it works sometimes.

I just checked the area around my new Velcade shot and, sure enough, the technique seems to have helped. There is slight redness around the needle mark, but very slight burning (only if I rub it). No itching or no tenderness. The other patch from a week ago, about this time the next day, was deep pink, burning, and needed many applications of steroid cream. It is still healing, no pain, and the color is more dark brown from the deep pink. In general terms, this new patch seems barely 25% as deep pink and a major improvement over the last week's experience. I thought of writing to you immediately after this observation, in case you are still getting the Velcade shots.

I had no idea when you started your chemo and how many cycles you had completed.I was about to send you a personal message in case you do not come across my update tomorrow in my thread. I just researched all your posts and came across your "My Strange Story" thread. You are going through so much!! My myeloma was discovered in a routine blood and urine test at a fairly early stage with no adverse symptoms. I should have had this routine checkup last year but, in retrospect, it would have been considered smoldering myeloma at those 'extrapolated" levels. In general, at almost 68, I have a small challenge to face, nowhere near the agony you are going through.

Your post helped me immensely and I wish you all the best in finding the allo transplant donor and a full recovery and hope you return to your normal life with your family.

Again, wishing you all the best,

K_Shash