[lacrimosasylvia]

Treatment for relapse with extramedullary disease?

by lacrimosasylvia on Wed Sep 21, 2016 11:03 am

I am hoping to find in­for­ma­tion on clinical trials or treatment options for my dad, who is in China.

He is 60 years old, and was diagnosed with the IgG type of multiple myeloma in December, 2015. Tests showed that he is at high risk of having a poor prognosis due to multiple chromo­some defects (forgive me if I'm not using the right terms here; I'm trying to translate the informa­tion I have from Chinese). He had renal failure at the time of initial diagnosis. After three months of dialysis, his kidney function is partially restored.

For the first four cycles of treatment, he primarily used Velcade and dexamethasone. He achieved a full remission after four cycles. But shortly after we found a tumor on his stomach. He was treated with Velcade, and the tumor disappeared.

Since the fifth cycle of his treatment, his doctor added Revlimid. Right at the beginning of his seventh treatment (started a few weeks ago), he had dozens of tumors grow rapidly in skin soft tissues all over the body. PET also showed a big tumor on his left kidney. But now his tumors seem to stop growing.

My dad did not have high-dose chemo or stem cell transplant, and does not consider to have one in the future.

My dad's doctors in China are not very optimistic on his prognosis, and they don't seem to have a better treatment option at this moment, likely because new drugs are not available in China right now.

I would really appreciate to hear your opinions and suggestions on my dad's situation. I hope to know what treatment or clinical trial options we may have outside China.

Thank you.

[Little Monkey]

Re: Treatment for relapse with extramedullary disease?

by Little Monkey on Wed Sep 21, 2016 1:22 pm

Have you thought about Singapore for treatment for your Dad? Chinese is one of the official languages there, and it has quality medical facilities.

[TerryH]

Re: Treatment for relapse with extramedullary disease?

by TerryH on Wed Sep 21, 2016 1:57 pm

Hello,

Sorry to hear about the difficulties your father is having in finding effective treatments for his disease.

If a transplant is still an option for your father, I think it is something he should consider. His doctors could try something like "DCEP" as a bridging therapy, and then the autologous stem cell transplant (which uses high-dose melphalan as the treatment).

If a transplant is not an option, then your father's doctors probably should be thinking of ways to treat him with melphalan as part of a non-transplant regimen. One option would be melphalan, prednisone, and thalidomide (MPT).

If pomalidomide (Pomalyst) is available in China. that is definitely something his doctor's will want to consider. There are reports that it can be effective in patients with extramedullary disease; see, for example, this article:

https://myelomabeacon.org/news/2011/04/01/pomalidomide-may-be-effective-in-myeloma-patients-who-develop-extramedullary-disease/

If Kyprolis is also available, then the combination of Kyprolis, Pomalyst, and dexamethasone would really be worth considering.

I'm assuming that Darzalex (daratumumab) is not an option in China, but that would be an obvious choice if it is. It's highly active against myeloma.

If, on the other hand, your father's doctors are constrained to working with somewhat older myeloma therapies, then they definitely should not neglect melphalan, and they also should consider cyclophosphamide, doxorubicin (or liposomal doxorubicin), and perhaps even vincristine- and etoposide-containing regimens.

You can search for myeloma related trials in many different countries at http://clinicaltrials.gov . For example, this is a list of open myeloma trials in China:

https://clinicaltrials.gov/ct2/results?recr=Open&cond=myeloma&cntry1=ES%3ACN

I believe this Chinese-language website may have more detailed information on clinical trials in China:

http://www.chictr.org.cn/

Good luck, and please keep us posted on how things go with your father.

[lacrimosasylvia]

Re: Treatment for relapse with extramedullary disease?

by lacrimosasylvia on Sun Sep 25, 2016 9:10 pm

Hey Little Monkey and TerryH,

Thank you both so much for such useful information. Sorry it took me a while to reply your messages.

Terry - I believe none of the newest drugs you mentioned – such as Pomalyst, Kyprolis, or Darzalex – are available in China. My father's doctors are using liposomal doxorubicin, vindesine, dexamethasone, and Revlimid for his treatment at this moment. I also learned that none of the drugs from America my father is / was using, such as Revlimid and Velcade, can be covered by his medical insurance in China. Also my father's insurance does not cover the expenses for hospitalization overseas.

Can we buy the newest chemo drugs directly from America with Chinese doctors' prescriptions?

My family really appreciate the help and advice we received from this forum. And Terry, thank you for your kind words and all the valuable information you gave us.

Sylvia

[Gala]

Re: Treatment for relapse with extramedullary disease?

by Gala on Sat Nov 05, 2016 2:25 pm

Hi, Sylvia,

I just saw your post and it looks like your dad is facing a similar situation my sister is in at the moment. Here is the forum thread I started with some information on the subject:

"Extramedullary disease on the head / skull" (started Nov 2, 2016)

Unfortunately, the cutaneous (skin) involvement is considered a bad sign of a very aggressive myeloma, and the prognosis is poor. I really feel for you and your family and hope your dad is getting help he needs. Please, let me know how he is doing. My sister is in Russia, where drugs and facilities are also limited. I am desperately looking for some solutions.