Any other frustrated Canadians out there? A family member of mine was diagnosed with multiple myeloma in November & has been experiencing peripheral neuropathy from IV bortezomib.
For some reason, Ontario, the most populated province in this country, has not approved SC bortezomib. I'm finding it so puzzling why. The doctors have decided to stop giving IV Bort & has switched to Revlimid instead, and I'm concerned since the Bort seemed to be working.
Advocating for patients in Canada seems to be met with such a roadblock. "Sorry it's not approved here", and move onto the next topic.
Any Ontario residents on this board have similiar experiences?
Forums
Re: Frustrated Canadians?
Hi EmilyD, I live in Alberta and really don't know whether or not Sub Q Velcade is approved here either...had mine by IV back in '09. Have you tried searching the 'Myeloma Canada' website, and asking them for help? Even 'regular' bortezamide has been approved unevenly over the whole country...it's a patchwork of acceptances, since 2008. That seems to be the norm for myeloma cancer drugs, including Revlimid. First Health Canada has to approve it and then the cost has to be picked up by approval , province by province. The provincial health boards pay for the treatments, they are not just usual prescription drugs at all! There is always a 'lag time' between the appearance of a new drug on the market and the availability at the patient level.
Last edited by Nancy S on Wed Jan 25, 2012 12:05 pm, edited 1 time in total.
-
Nancy S - Name: Nancy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Frustrated Canadians?
Emily, I live in Ontario and receive IV Velcade and have some peripheral neuropathy as well . I know that the oncologists are trying to get Velcade approved for sc administration but I anticipate that a large part of the problem is the fact that Cancer Care Ontario only funds IV meds that are given in a cancer centre. This policy has existed since the organization's founding in 1996. Given that sc Velcade is equally effective, cheaper to give and with less peripheral neuropathy common sense would dictate that it should be given as the medication cost is the same whether IV or sc . In British Columbia it is administered both IV and sc in the cancer centre ; to minimize any errors, the same concentration of med is given both ways, just needing two sc injections if the volume is too great for one. Hopefully we will see some flexibility and change of policy in the near future as the initial sc Velcade study was presented over a year ago at the 2010 ASH conference.
-
bond007
Re: Frustrated Canadians?
Also in Ontario: I asked my onc about it this summer, as I was/am experiencing neuropathy as well. His response was that the nurses were not yet trained in subq, and that was the reason I was not able to get it that way.
Given the obviously superior results with subq, you'd think it would be a no-brainer, eh? Is it a more difficult procedure for the nurses, perhaps? Are there more/other risks?
Given the obviously superior results with subq, you'd think it would be a no-brainer, eh? Is it a more difficult procedure for the nurses, perhaps? Are there more/other risks?
John Snippe
** I prefer not to think of myself as a cancer patient,
but rather as a cancer survivor trainee! **
** I prefer not to think of myself as a cancer patient,
but rather as a cancer survivor trainee! **
-
Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Frustrated Canadians?
Greetings from rainy Seattle,
One thing to keep in mind is that there is very good evidence showing that the use of Velcade (bortezomib) once weekly INTRAVENOUSLY instead of twice weekly IV decreases the rate of neuropathy to a very similar degree as that of twice weekly subcutaneous administration does.
This was published by Geuardi from Italy in Blood December 2, 2010 vol. 116 no. 23 4745-4753.
To quote from the conclusions of the article:
"The incidence of grade 3/4 peripheral neuropathy was 8% in the once-weekly and 28% in the twice-weekly group (P < .001); 5% of patients in the once-weekly and 15% in the twice-weekly group discontinued therapy because of peripheral neuropathy (P < .001). This improvement in safety did not appear to affect efficacy."
Other investigators (e.g. Reeder Blood 2010 115:3416-3417 from the Mayo clinic used once weekly IV Velcade in the CyBorD regimen) also found a similar decrease in neuropathy with once weekly IV usage.
In my opinion twice weekly intravenous Velcade should no longer be administered under any circumstances. Since the intravenous route has an FDA approved indication I think that pharmacists should have no issues giving it once weekly instead of twice weekly. The lack of FDA approval for the subcutaneous route is probably the only reason that some pharmacists are reluctant to allow/support this route of administration.
Thank you for asking this question. The problem of neuropathy from Velcade is a major issue. For some reason the once weekly IV route has never received the same amount of attention/press that SubQ has garnered. The once weekly IV route has not been compared head to head with the twice weekly SubQ route.
One thing to keep in mind is that there is very good evidence showing that the use of Velcade (bortezomib) once weekly INTRAVENOUSLY instead of twice weekly IV decreases the rate of neuropathy to a very similar degree as that of twice weekly subcutaneous administration does.
This was published by Geuardi from Italy in Blood December 2, 2010 vol. 116 no. 23 4745-4753.
To quote from the conclusions of the article:
"The incidence of grade 3/4 peripheral neuropathy was 8% in the once-weekly and 28% in the twice-weekly group (P < .001); 5% of patients in the once-weekly and 15% in the twice-weekly group discontinued therapy because of peripheral neuropathy (P < .001). This improvement in safety did not appear to affect efficacy."
Other investigators (e.g. Reeder Blood 2010 115:3416-3417 from the Mayo clinic used once weekly IV Velcade in the CyBorD regimen) also found a similar decrease in neuropathy with once weekly IV usage.
In my opinion twice weekly intravenous Velcade should no longer be administered under any circumstances. Since the intravenous route has an FDA approved indication I think that pharmacists should have no issues giving it once weekly instead of twice weekly. The lack of FDA approval for the subcutaneous route is probably the only reason that some pharmacists are reluctant to allow/support this route of administration.
Thank you for asking this question. The problem of neuropathy from Velcade is a major issue. For some reason the once weekly IV route has never received the same amount of attention/press that SubQ has garnered. The once weekly IV route has not been compared head to head with the twice weekly SubQ route.
Dr. Edward Libby
University of Washington & Fred Hutchinson Cancer Research Center
University of Washington & Fred Hutchinson Cancer Research Center
Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgable physician.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Frustrated Canadians?
Hi Ilive in Toronto Ontrario.
When I was diagnosed Velcade was not approved for my case since it was only approved for relapse. But since it was so "effective to myeloma" the hospital / drug company funded it compassionate grounds since Cancer Care Ontario would not fund.
There is no way I could have afforded it myself. I had it twice a week IV. I developed the painful neuropathy towards the end of treatment (before my transplant), and skipped one dose, and had some other reduced due to low counts. I am forever thankful I was able to get access to this drug, I responded really well to it (with high dose dex).
If the Velcade is working, I would ask her doctor about first trying reduced dose before switching drugs. There is no guarantee Rev will work as well, and you might as well try for full response to one drug before switching to the next?
When I was diagnosed Velcade was not approved for my case since it was only approved for relapse. But since it was so "effective to myeloma" the hospital / drug company funded it compassionate grounds since Cancer Care Ontario would not fund.
There is no way I could have afforded it myself. I had it twice a week IV. I developed the painful neuropathy towards the end of treatment (before my transplant), and skipped one dose, and had some other reduced due to low counts. I am forever thankful I was able to get access to this drug, I responded really well to it (with high dose dex).
If the Velcade is working, I would ask her doctor about first trying reduced dose before switching drugs. There is no guarantee Rev will work as well, and you might as well try for full response to one drug before switching to the next?
-
Ayssa
Re: Frustrated Canadians?
Thanks Dr. Libby for the detailed information about Velcade...infusion vs. sc....really appreciate the medical posts! Now have a better understanding of that issue.
-
Nancy S - Name: Nancy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Frustrated Canadians?
Thanks everyone for your replies.
She has been receiving once weekly Velcade - so it wasn't a matter of receiving it twice a week and needing a reduction in that way.
I guess i'm just frustrated that I'm finding such discrepanies between provinces - since I live in another province and see treatments being done differently.
Snip - I find your doctor's response a bit funny. I am an RN and we are all trained in giving subcutaneous medications. There is no way that would be the reason why a medication couldn't be given. Much easier than starting an IV, that's for sure.
She has been receiving once weekly Velcade - so it wasn't a matter of receiving it twice a week and needing a reduction in that way.
I guess i'm just frustrated that I'm finding such discrepanies between provinces - since I live in another province and see treatments being done differently.
Snip - I find your doctor's response a bit funny. I am an RN and we are all trained in giving subcutaneous medications. There is no way that would be the reason why a medication couldn't be given. Much easier than starting an IV, that's for sure.
Re: Frustrated Canadians?
The FDA approved subcutaneous Velcade this week !
See the News section of the Beacon.
Americans (and hopefully Canadians) should now have easy access to this form of adminstration.
See the News section of the Beacon.
Americans (and hopefully Canadians) should now have easy access to this form of adminstration.
Dr. Edward Libby
University of Washington & Fred Hutchinson Cancer Research Center
University of Washington & Fred Hutchinson Cancer Research Center
Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgable physician.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
11 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects
