Canadian, failed keytruda, amongst other things. What’s left?

Seems to me there is expanded access of te combo offer in Montreal, Ottawa and Toronto…

Seems to me there is expanded access of te combo offer in Montreal, Ottawa and Toronto…

Seems to me there is expanded access of te combo offer in Montreal, Ottawa and Toronto…

Hi Melanmommy, the trial that you posted looks great but Johnbil has already been testes for the braf v600e mutation and tried targeted therapy with Dabrafenib/Mekinist combination. Since the trial is set up for screening for mutation and targeted therapies it would just repeat what he has already done. 

Hi Melanmommy, the trial that you posted looks great but Johnbil has already been testes for the braf v600e mutation and tried targeted therapy with Dabrafenib/Mekinist combination. Since the trial is set up for screening for mutation and targeted therapies it would just repeat what he has already done. 

BRAF is not the only genetic mutation in melanoma.  As a matter of fact, a friend of mine was just accepted into the trial with previous BRAF targeted treatment.  She also has the Ros-1 mutation.  She will receive Crizotinib for the trial.  I'm not saying that he WILL be eligible, I am just saying it is possible.  The molecular analysis they are doing for this trial is much deeper than what our biopsies routinely get.  In my opinion, in 10 years, thse developing targeted therapies will be the first line treatment for many cancers.  The type of cancer will be less important than its genetic make-up.

BRAF is not the only genetic mutation in melanoma.  As a matter of fact, a friend of mine was just accepted into the trial with previous BRAF targeted treatment.  She also has the Ros-1 mutation.  She will receive Crizotinib for the trial.  I'm not saying that he WILL be eligible, I am just saying it is possible.  The molecular analysis they are doing for this trial is much deeper than what our biopsies routinely get.  In my opinion, in 10 years, thse developing targeted therapies will be the first line treatment for many cancers.  The type of cancer will be less important than its genetic make-up.

I would like to know if keytruda is covered by the Ontario government or if it was covered by private insurance only?

My brother in Boston was pulled from the brink of death one and a half years ago by keytruda.  He had bladder cancer and it was spreaded to his lymph nodes and to his neck.  Just a few days after he received keytruda, the small tumor on his neck disappeared and he was fully cured after about 6 months of keytruda.

The problem now is with 89-year old mother, she was diagnosed with liver cancer about 2 years ago.  Her tumor was at 2.5 cm x 2.7 cm when it was diagnosed.  She had the radiofrequency ablation two and a half months later and the tumor had grown to 5 cm x 4.7 c.m. She received her first chemotherapy about five months later and another one in another four months.  After that, the doctor only arrange a CT scan in 6 months and saw her a month later, they saw something but the doctor only arranged another CT scan in another 6 months and now they found a new leision of  3.1 cm and 2.1 c.m and another leison of another 0.7 cm at the abdominal wall. 

I live in Quebec and the health services we are receiving is less than desirable.  My mother only had CT scans twice and saw the oncologist once in the last Numerous mistakes had been made.  I am just hoping that keytruda can save my

Does anybody know how can I get keytruda and if it is covered by the Quebec or Ontario government? 

My mother just visited the oncologist today and he decides that he is not seeing her again and let my mother's liver cancer runs its own course and he expects that my mother will live for less than a year.  Anyway, my mother just got 2 CT scans in the last 12 months and only visited that doctor twice, including today's appointment. 

That oncologist just referred my mother to another doctor that is not for the treatment of the disease but for alleviation of the symtoms.

Indeed treatment in Quebec is absolutely horrendous! I was seen at CHUM at the time of my diagnosis in 2016 and got so scared shitless that I transferred myself to MUHC. Concerning Keytruda, I dont think its offered much beyond melanoma and lung cancer at the moment in Quebec. You can maybe try the Chipsa Hospital in Tijuana where they offer a bunch of alternative treatments and some Opdivo also appenrently. You have to be persuasive and on the ball. Google it. I did and I'm trying to look at all my options since I'm an early Stage 3b… Good luck.

Thank you very much, Sole.  It is very kind of you to take your time to answer my question when you are sick yourself.  It is so stressful in the last 10 days that maybe it is the reason I have shingles right now.  I sincerely hope that you have all the options available to you and have a speedy recovery.  You have liver cancer?

My mother’s doctor is at Royal Victoria (MUHC), although we are not seeing him anymore.  In the last visit, he just said that the cancer had spread.  I asked him if he was going to do the radiofrequency ablation again.  He said it was everywhere (in the CT scan report, I just see a tumor in the liver and a small one at the abdominal wall) and my mother is old.  So I understood what he meant and asked him how long my mother would live.  He said less than a year.  That was basically all the conversation we had in that visit.  If I did not ask him some questions, that visit could easily finish in less than 3 minutes.  I did ask him if the drug keytruda is available in Quebec he just told me to ask the new doctor. 

Half a year ago, that doctor did not explain anything at all.  He just looked at the blood test and the CT scan and said that my mother’s liver cancer did not spread and he just arranged a CT scan and appointment six months later.

It is so difficult for me to accept that because my mother still does not have any serious symptoms but she is sleeping 10-12 hours a day.  Some people are saying my mother is so healthy at such an old age. She is still cooking and she does not know anything about that because she seldom went to see the doctor because they never checked on her, even she told him she had some problems, he just said that “we are talking about cancer”.  But when we are talking about cancer, he would just see my mother in every 6-7 months.

No, I had melanoma removed last July 2016 and it seems to be at bay right now. I really feel for you and your mother. The health care system is simply horrendous in Quebec. I was never sick until this happened to me and I guess I should be thankful that I did not have to go to any hospital before. Sadly, I’m 49 yo and facing the system and fighting cancer… I don’t know if Pd-L1 therapy has aby success with liver cancer but I would definitely research it myself if I were you. One thing I came to understand is that the Drs will not go outside their current clinical guidelines in Quebec. You have to do the work and advocating yourself. Even if it means thinking outside the traditional box. Call Chipsa and ask. M

I should have known what that doctor meant when he only saw my mother every 6-7 months; he was waiting for that moment to let my mother’s cancer run its own course.  I should have tried something else other than to rely on them. 

The good news for you is Keytruda is approved in Canada for melanoma, bladder cancer, lung cancer…  but not yet for liver cancer. Our family doctor, Dr. Dobrinski at Prac Extension CLSC, offers great helps.  He would offer all the helps he could give.  After I got the bad news from that doctor from MUHC, I called Dr. Dobrinski and he offered to meet me right away out of his normal daily schedule.  He searched if Keytruda was available for liver cancer in Canada, obviously the answer was no, and we talked for over 40 minutes.   He also said that even that drug is available; it does not mean that the government will pay for it.
The only problem is how to get access to it when you need Keytruda.   You must have known that the former U.S. president Jimmy Carter is cured by that drug for melanoma. 

“One thing I came to understand is that the Drs will not go outside their current clinical guidelines in Quebec.” 
I think it is the norm for most of the doctors.  I was desperate enough so I wrote a long letter, with all the details about my mother’s case, and emailed to beg that Dr Petrella, at Sunnybrook Hospital in this thread.  I expected that I would never get an answer.    After a week, I emailed her again and just asked one question if Keytruda is available for liver cancer in Canada.  I had a slim hope that she would answer my question because she uses that drug on her patients and the answer is just one word, yes or no.  I did not get an answer as expected and I do not feel anything because even that doctor my mother visited at MUHC did not even answer that question, he told me to talk to the new doctor (because he was not seeing my mother anymore).  

My mother still looks healthy.  I try to convince her to eat healthy but she refuses to cut down on her chips consumption. I have been sitting in front of my computer for days and sometimes I want to scream out loud but I would never let it out as my mother still does not know how serious is her condition (I am living with my mother).  When I read some stories how their love ones suffered before they died of liver cancer, sometimes I lost my mind.

I will buy that  fucoidan supplement from Japan for my mom and it is all I can afford in long term.  It costs over $1200 a month and it is expensive for my moderate income.

Good luck to your health and remember you have Keytruda to rely on (when money is not a problem if it is not covered by the government) and it produces good results.

BRAF is not the only genetic mutation in melanoma.  As a matter of fact, a friend of mine was just accepted into the trial with previous BRAF targeted treatment.  She also has the Ros-1 mutation.  She will receive Crizotinib for the trial.  I'm not saying that he WILL be eligible, I am just saying it is possible.  The molecular analysis they are doing for this trial is much deeper than what our biopsies routinely get.  In my opinion, in 10 years, thse developing targeted therapies will be the first line treatment for many cancers.  The type of cancer will be less important than its genetic make-up.

Hi Melanmommy, the trial that you posted looks great but Johnbil has already been testes for the braf v600e mutation and tried targeted therapy with Dabrafenib/Mekinist combination. Since the trial is set up for screening for mutation and targeted therapies it would just repeat what he has already done.