› Forums › General Melanoma Community › Taf/Mek was working … Now maybe has stopped?
- This topic has 8 replies, 5 voices, and was last updated 5 years, 10 months ago by
CPM0720.
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- June 5, 2018 at 4:27 am
Just worrying out loud here. My husband (we just got married!) was doing great on taf/mek since mid-April, but over the past week has noticed back pain while he is sitting down in the same area of his lower back where he had spine metastases pre-Taf/Mek. He isn't taking painkillers for it yet and he says it feels a little different from last time (but his memory is shaky), but there's no reason for the pain and it isn't getting better (doesn't seem to be getting worse yet, either). It hurts when he sits in uncomfortable chairs or for too long. Standing or lying down relieves the pain. This pain was not present a week ago and he's only 35.
We called the oncologist last week but she hasn't returned our call. He goes in for blood work, an MRI and a CT scan next week — so there's not much more we can do, I guess, unless the oncologist decides to see him a week earlier than planned.
I'm trying to stay optimistic but I think it might be his cancer growing resistant. He had extremely high LDH and metastasis in more than 3 organs, which I've read often means a shorter response to the drugs. He's just had such bad luck so far that I think this might be more bad luck. Immunotherapy won't be covered anymore since he's been on taf/mek (we're in Canada) so this is the last systemic treatment available to us now.
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- June 5, 2018 at 12:33 pm
Hi there,
I am also in Canada and am wondering if you are being seen by a melanoma specialist. I know there are oncologists that just treat melanoma in larger city centers i.e. Toronto. It seems very odd to me that you haven't received a call back from your oncologist. I am not aware of the process of immunotherapy after taf/mek but am saddened to hear that it wouldn't be covered especially since so many have had success in switching to an immunotherapy after use of taf/mek to lessen the tumor load.
I am thinking of you both and hope you can get answers to his pain soon.
Nancy
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- June 5, 2018 at 1:51 pm
I’m in Toronto and was started with Taf/Mek then transitioned to immunotherapy which was covered provincially. There may be a limit on going back to immunotherapy a second time, but I’m not sure. if Your facility has a reimbursement specialist, they might be able to help.
Linda
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- June 5, 2018 at 1:51 pm
I’m in Toronto and was started with Taf/Mek then transitioned to immunotherapy which was covered provincially. There may be a limit on going back to immunotherapy a second time, but I’m not sure. if Your facility has a reimbursement specialist, they might be able to help.
Linda
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- June 5, 2018 at 3:49 pm
Hm I'll ask about it. He tried immunotherapy one time here in BC on the Melody Program,but the cancer progressed too quickly so a week later they put him on Taf/Mek. My understanding is that the Melody Program only covers immunotherapy for people who haven't had any other systemic treatment.
Our oncologist here is not a melanoma specialist. We're in Vancouver, BC. There isn't a melanoma specialist here, as far as I can tell? Her bio says she researches blood cancers. However, we are at the major cancer center of the province so hopefully that's okay. I'm in school at UBC right now and he's on medical leave from his job, so we don't want to move to Toronto — although I have family there — but I guess if that's the only place he could get treatment …
Maybe we could get a second opinion from your melanoma specialist, Linda. What's his/her name?
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- June 5, 2018 at 4:46 pm
The Canadian mel network is showing these facilities and doctors as mel specialists in B.C. and AB:
British Columbia
Vancouver:
British Columbia Cancer Agency, 13750 96th Ave., Surrey, British Columbia V3V 1Z2
Christopher Lee, MD (604-930-4017)
Gary Pansegrau, MD (604-930-4064)
http://www.bccancer.bc.caVictoria:
BCCA, 2410 Lee Ave.,Victoria, British Columbia V8R 6V5 | (250-519-5570)
Kenneth Wilson, MD
http://www.bccancer.bc.caAlberta
Edmonton:
Cross Cancer Institute, 11560 University Ave., Edmonton, Alberta 76G 1Z2 | (780-432-8757)
Michael Smylie, MB, ChB, FRCP(C)
http://www.cancerboard.ab.caCross Cancer Institute, 2-104 Clinical Sciences Building,
8440-112 Street, NW, Edmonton, Alberta 76G 2G3 | (780-407-1257)
Tom Salopek, MD
http://www.cancerboard.ab.caCalgary:
Tom Baker Centre, 1331-29 Street NW Calgary, Alberta T2N 4N2 | 403-521-3706
Tina Cheng, MSc., MD, FRCP(C)
http://www.cancerboard.ab.caI think it would definitely be worth a call at least to see if you can't transfer to one of these doctors and, if it was me, I'd be looking for a clinical trial I might fit into.
Sending all best wishes!!!!!!
Barb
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- June 5, 2018 at 5:06 pm
I’m with Dr Hogg at Princess Margaret, and he is wonderful, but I doubt that there is treatment here you can’t get in Vancouver…if he has insurance through his work private funding would be another thing to investigate
this organization has info across Canada re treatment covered and docs.. and patient info sessions, peer networking etc
https://www.melanomanetwork.ca/
good luck with your investigations!
linda
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- June 8, 2018 at 4:19 pm
My husband is on Taf/Mek and he has had back pain. Also, his side effects seem to come and go. (They seem to be the worst as soon as he starts a new bottle of meds.) If your husband was showing response, I would not lose hope that it is still working because he has back pain. Are there any tumors he can feel and can he tell if they are shrinking? My husband can feel certain lymph nodes and can tell when they shrink. Also, when his side effects are the worst, that is when his tumors shrink the most.
Just wanted to send that encouragement to you. I know it is hard not to look into every pain but praying this is just a side effect and the Taf/Mek is doing its job!
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