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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Canada & multiple myeloma

by cdnirene on Fri Jun 03, 2016 5:37 pm

Recent discussions involving treatment in Canada:

"First relapse - now what?" (started June 2, 2016)

"Best bring a cup of tea, this is going to be long" (started May 2, 2016)

cdnirene
Name: Irene S
Who do you know with myeloma?: me
When were you/they diagnosed?: September 2014
Age at diagnosis: 66

Re: Canada & multiple myeloma

by Little Monkey on Sat Jun 04, 2016 9:10 am

Thanks, Irene.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Canada & multiple myeloma

by cdnirene on Sun Jun 05, 2016 1:33 pm

Diagram and explanation of approval process for new drugs in Canada:

http://canadaspremiers.ca/phocadownload/pcpa/scope_of_pcpa_process_dec_2014.pdf

From a myeloma information session I attended yesterday where a Cancer Care pharmacist spoke, negotiated drug prices between the drug companies and the pan-Canadian Pharma­ceutical Alliance (pCPA) are confidential. Their website shows the status (updated monthly) of negotiations.

From my hastily scribbled notes:

The pharmacist expected pCPA to do the following reviews:

  • Daratumumab (Darzalex) probably in September 2016 - probably 3 drug combo
  • Ixazomib (Ninlaro) probably in 2017 (three prior treatment lines) - in combo with Revlimid and dex.
He also said that there was a positive recommendation by pCPA two days ago for carfilzomib (Kyprolis), twice a week, 3 weeks on, 1 week off. Kyprolis treatment would be in combination with Revlimid and dex.

cdnirene
Name: Irene S
Who do you know with myeloma?: me
When were you/they diagnosed?: September 2014
Age at diagnosis: 66

Re: Canada & multiple myeloma

by Little Monkey on Sun Jun 05, 2016 7:24 pm

Cdnirene,

I heard the exact same thing yesterday during a presentation by a doctor at a different meeting that I attended.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Canada & multiple myeloma

by Nancy Shamanna on Mon Jun 06, 2016 8:07 am

Some interesting and hopeful news about Kyprolis...

pERC Initial Recommendation Issued for:
Carfilzomib (Kyprolis) for Multiple Myeloma
Trabectedin (Yondelis) for Metastatic Liposarcoma or Leiomyosarcoma
June 3, 2016

Today, the pCODR Expert Review Committee (pERC) issued the Initial Recommendation for carfilzomib (Kyprolis) for multiple myeloma and trabectedin (Yondelis) for metastatic lipo­sarcoma or leiomyosarcoma.

Carfilzomib (Kyprolis)

pERC recommends reimbursement of carfilzomib (Kyprolis) in combination with lenalidomide and dexamethasone (Len-Dex) for patients with multiple myeloma following failure of one prior treatment, on condition that the cost-effectiveness be improved to an acceptable level. Treat­ment should be in patients who have good performance status and are deemed to have ade­quate renal function. Treatment with carfilzomib should continue until disease progression or unaccept­able toxicity, up to a maximum of 18 cycles.

Thanks for the information posted, Irene!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Canada & multiple myeloma

by Little Monkey on Thu Aug 04, 2016 7:55 am

There is a new program in Southern Ontario which allows stem cell transplant recipients to recover in a hospital closer to home:

"Returning to Windsor for transplant recovery a 'gigantic' benefit for cancer patients," Windsor Star, August 2, 2016 (full text of article)

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Canada & multiple myeloma

by Wobbles on Thu Aug 04, 2016 6:23 pm

I just noticed this thread and decided to book myself in as a Canadian suffering with myeloma.

I won’t go over my introduction as I’ve posted that already in the Members Introduction section. But I’ll say that I am recently diagnosed with myeloma that has a t (4;14) translocation and have just started the CyBorD (cyclophosphamide, Velcade, and dexamethasone) treatment protocol. I am only three weeks into what should last 45 weeks. I also have hairy cell leukaemia and a clonal T cell expansion, probably another cancer of the blood system. But myeloma is the one I fight. The others are wait-and-see diseases

Since I live in Burnaby just outside Vancouver, I am familiar with the health care system here in British Columbia. I suspect we Canadians have many similarities and a few striking differences. (On the whole I am very pleased with our system, just so you know my biases.)

But we do have quirks. I ran into one when I first started my chemo. My hematologist had given me a prescription for prochlorperazine (Stemetil, Compazine), telling me that I might need this to quell nausea. (I did need it.) I did not have to pay anything for the prescription because I had exceeded my yearly deductible limit in BC Pharmacare. I have no idea what my limits are.

However, when I went to my first chemo session, I was give a high end anti-nauseant (ondansetron) with the nurses telling me this is a better choice than the Stemetil. But when they told my doctor’s office to order a prescription for this, I found that it was not covered by BC Pharmacare. The pills ran around $6 a pop. Ouch!

As it turns out, the ondansetron had a side effect for me (constipation). This week I used Stemetil and it worked just as well. And no … I did not buy the expensive pills. (I’m okay with governments trying to encourage use of lower cost generic drugs as long as they are proven effective and safe. More expensive drugs are okay too, but first try the cheaper ones.)

Another quirk with BC pharmacy that I experienced is with something called valacyclovir. This is an antiviral that I am taking to ward off shingles while I am on chemotherapy. The gov­ern­ment would not pay for a 90-day supply, but they are okay with a 30-day supply as many times as needed. Otherwise I pay for the drug for myself. So I take the 30-day supply and renew later.

I wish you all luck.

Joe

Wobbles
Name: Joe
Who do you know with myeloma?: myself
When were you/they diagnosed?: June 2016
Age at diagnosis: 67

Re: Canada & multiple myeloma

by Nancy Shamanna on Sat Aug 06, 2016 11:19 am

Hi Wobbles,

Thanks for posting about how pharmaceuticals are paid for in British Columbia. Moving over one province to the east, in Alberta, any drugs prescribed through the Cancer Centre pharmacy are paid for in full. This includes chemotherapy drugs and any other drugs such as anti-nauseant, that are used during stem cell transplants or other treatments.

If the pharmaceutical is prescribed by another doctor outside of the Cancer Centre, then the patient would be responsible for paying for it. Now that my husband and I are seniors, we are using a Blue Cross plan, and get a senior's discount! (I get some other prescriptions through my family practitioner.)

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Canada & multiple myeloma

by Little Monkey on Sat Aug 06, 2016 11:56 am

I like Alberta's chemotherapy coverage program. BC's program is pretty good too. The further west in Canada, the more likely you will have to pay nothing for the pill-form of cancer treatment. The further east you go, the more likely you will have pay for any pill-form of treatment, and in some Atlantic provinces, you will pay dearly. The highest-tax provinces tend to have the worst cancer treatment coverage, oddly enough.

Ontario is somewhere in the middle, with the provincial government covering the cost of non-IV medication after you exceed 4% of your household income on medication.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Canada & multiple myeloma

by Canuck Bob on Mon Aug 08, 2016 3:46 pm

Just started the selinexor trial called STOMP. My history involves an autologous stem cell transplant followed by 2 years of Revlimid, then 3 years to relapse. Recently hit the relapse threshold and been waiting a bit to be accepted into a trial.

Canuck Bob
Name: Bob
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb. 2011
Age at diagnosis: 57

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