[marijasgirl]

First relapse - now what?

by marijasgirl on Thu Jun 02, 2016 7:06 pm

Hi Everyone,

My name is Una. My mother was diagnosed with multiple myeloma in 2013. After months of visiting doctors and several ER's and finally stumbling upon a kidney specialist, she was informed her kidneys had failed, which we were shocked to find out. All she had felt for a few months was tired, just a feeling of low energy.

Finally after a bone marrow biopsy she was rushed into the Cross Cancer (in Alberta) and she began treatment right away. I apologize, I do not know all the names of the treatments she had, but she did I believe 6 cycles of Velcade and dex followed by a stem cell transplant. I believe she was considered a "full response," as she had no sign of the M protein and all other levels were normal pre-transplant.

Following her transplant she was put on Revlimid (I believe that's another name of lenalidomide) as a maintenance therapy. She has been on that since April 2014.

She has been feeling great and she looks great too! However, April 2016 her kappa light chains had shown an increase (I don't know what the measurements are, but it was 200), then it went up to 2000 by May.

Her oncologist has been nothing short of amazing, always available to answer any of our questions. He was greatly concerned by the increase in the kappa levels. He had her start her treatments again (Velcade and dex). However, after about a month, he said her platelet levels have dropped so, to him, that's an indication the therapy isn't working.

Now she is starting treatment with Kyprolis (carfilzomib).

We are both pretty scared, as she responded so well to her initial treatments. Now we don't know what to think. My mom is still very young, I definitely need her around for many, many years to come!

I was wondering if anyone has had a similar experience or would be able to shed some light on this situation for us?

Also for people who have relapsed, what has your treatment been like? Have you been able to achieve good results with treatment again?

Thank you in advance!
Una

P.S. - I wish i had known about the Myeloma Beacon while my mom went through her first treatments. It would have been helpful!

[lrankin]

Re: First relapse - now what?

by lrankin on Fri Jun 03, 2016 7:48 am

marijasgirl:

I wont' be able to help answer your question but I am hopeful the Myeloma Beacon community will respond to you. You gave some good information. A couple of other things:

Is your mom seeing a myeloma specialist rather than only an oncologist? Sounds like you have had good care. It may be best to ensure someone who really focuses specifically on myeloma is part of your team.

The Myeloma Beacon has been so amazingly helpful to me. I check it everyday to learn and try to help others. I'm sure you are using Advanced Search function so you can search on multiple terms for posts? Sometimes people don't realize they can do that and you may want to search on relapse, Kyprolis, and carfilzomib.

Hope this is helpful. If nothing else, you know people are reading and thinking about if they can provide some beneficial tidbits.

Wishing you the best and I will follow your thread.

[Nancy Shamanna]

Re: First relapse - now what?

by Nancy Shamanna on Fri Jun 03, 2016 10:47 am

Dear Marijasgirl,

I am sorry to hear that your mother is having these problems with multiple myeloma. I live in Alberta too and am treated at the Tom Baker, in Calgary. I know that the Cross Cancer Institute in Edmonton is a highly respected institution.

I haven't had exactly the same experiences as your mother, but did have a first relapse, and am doing well again now. My initial treatments were the same as hers.

My treatments now are Revlimid plus dexamethasone. Every patient is different though, and I am glad to know that you have access to Kyprolis. I hope that it works really well for her, and if not, there are other treatments to try also.

Best wishes to you both!

[philatour]

Re: First relapse - now what?

by philatour on Fri Jun 03, 2016 4:42 pm

A two year period between stem cell transplant and first relapse is a good starting point. Your doctor sounds on top of her situation. Kyprolis is quite a potent drug; best results usually show up between the 2nd and 4th cycle. I assume she is also taking dexamethasone? If the Kyprolis is not sufficient, either Revlimid or Pomalyst can be added to the regimen. There are other drugs or mono­clonal antibodies available if this is simply not the right regimen for your mom.

Relapses are tricky. Many find another treatment combination, get the myeloma back under control, and resume maintenance. A smaller group finds it very difficult to get the myeloma back under control. As the others have said, it's an individual situation when evaluating treatment and progression free status.

Wishing you all the best!

[marijasgirl]

Re: First relapse - now what?

by marijasgirl on Mon Jun 06, 2016 1:28 pm

Irankin, Nancy and Philatour, thank you all for your responses!

I appreciate the information! So far the new treatments are tolerable and in about a month we will know whether or not this will be the path we continue on!

I trust this new treatment combination will be effective! Thank you all and I wish you all the best on your journeys!

Una

[cdnirene]

Re: First relapse - now what?

by cdnirene on Mon Jun 06, 2016 1:56 pm

Una,

Does your province (Alberta) pay for the Kyprolis drug or is it being paid for via clinical trial?

I ask because the drug is still going through the approval process in Canada.

[marijasgirl]

Re: First relapse - now what?

by marijasgirl on Thu Jun 09, 2016 3:37 pm

Hi Irene,

I believe that it is being covered through both my parents' insurance companies.
I hope that helps!

Una

[TerryH]

Re: First relapse - now what?

by TerryH on Thu Jun 09, 2016 5:56 pm

I really don't get the confusion on this point.

Kyprolis IS approved in Canada; there's a whole thread about the news here in the forum:

https://myelomabeacon.org/forum/kyprolis-approved-in-canada-t6649.html

Doctors in Canada can use it to treat patients outside of clinical trials without any special permissions and without having to import it. This is true as long as it is used within the scope of the Health Canada approval, which is for use "in combination with lenalidomide and dexamethasone ... for the treatment of patients with relapsed multiple myeloma who have received 1 to 3 prior lines of therapy."

The process Kyprolis has been going through more recently is getting permission for provincial funding. That is a separate process -- a reimbursement process. It is not what most people talk about when they are discussing whether or not a a drug is "approved".