[Caro]

My partner's story

by Caro on Mon Apr 12, 2010 8:31 am

Hello,

I'm 53 years old and live near Frankfurt/Main in Germany. Please excuse my mistakes in English.

My partner was diagnosed in Aug. 07, aged 57, with multiple myeloma Stadium III A, IgA, LC Kappa, hat multiple Osteolyses (don't know the English expression - wholes in the bones, caused by multiple myeloma). Started therapy with Velcade, Cyclophosphamid and Dexamethason in a clinical trial. His response very good and he had an autologous stem cell transplantation in Dec. Suffered a lot in the first 3 weeks after this, but recovered slowly but surely. He was told in Feb. 08 he ist in CR and that made us very happy and relieved. We had a real good time from summer 08 till summer 09. Traveled to Thailand for four weeks - everything seemed ok. Got a Zometa infusion every month for 2 years, now all three months.

In July 09 he had a swelling at the cheekbone and it hurt, so he had a CT. It showed a pathologic fracture of the cheekbone and a ?? weak part ?? manifestation of the multiple myeloma, also at his sacrum. MRI showed further manifestations in the thighbones. In all that time all blood counts were in good order, nothing significant for the multiple myeloma. In August 09 started new therapy with Revlimid and low dose Dexamethason. In the fourth cycle he broke out in a heavy skin rash - looked like measles, but had no fever, so Revlimid therapy was stopped. His IgG was very low, so he had infusions of privigen, human IgG. In the beginning of 2010 he became very weak. Mid of Feb. MRI showed new multiple myeloma manifestations inside the pelvic bones, ischium etc. We were so shocked - seemed that Revlimid did not work. He started therapy again with Velcade, Caelyx (liposomal Doxorubicin) and Dexa.

By now he is still very weak, has no appetite, lost since Feb. 7 kg - his height is 1,80 m, has now 65 kg, his fingers are trembling violently. We are really desperate. It seems his multiple myeloma became non-secretorious, because his blood counts are all normal - nothing to see of the multiple myeloma.

We hope the therapy helps or maybe he might undergo an allogeneic stem-cell transplantation (Mini- Allo it's called in Germany, this is not myelo ablative), but I fear he is to weak for this in the moment.

Kind regards to everyone

Caro

[Jack L.]

Re: My partner's story

by Jack L. on Fri Oct 08, 2010 2:01 pm

Dear Caro, thanks for sharing your story of hope and heartbreak. I'm really glad you were able to thoroughly enjoy a myeloma-free year from 08-09. We definitely have to take advantage of the good years, months, weeks, or even just days because you can't take them for granted.

How's your partner been doing since you last wrote? I hope the Velcade, Caelyx, and dexamethasone are working for him and that he has gained his appetite back. Has he found a match or been cleared for an allo-transplant?

By the way, your English is great, especially considering all of the medical jargon myeloma forces us to learn.

[Caro]

Re: My partner's story

by Caro on Thu Oct 21, 2010 11:19 am

Dear Jack, things went much better since I wrote this. After 3 months our doctors found out, that his problems are caused by a heavy hyperthyreosis. After he took the medicaments for some weeks, he felt much better, gained weight. MRI in July showed that the new lytic lesions in his pelvic bones had disappeared and he doesn't need any therapy at the moment. Next week he will stay for some days in the hospital to "kill" the thyroid with a radio iodide therapy. But every looks much better now for us. We pray it will last for a long time.

Hope you are well too

Kind regards from Germany

Caro