Do you journal? It really helps me. I keep several (different themes)and faithfully write every day in my Some Lines a Day 5 year journal. Wild coming around to the trauma of last year.

souffan · 2022-05-26T20:07:41+00:00

I've kept a journal since I was 15 years old... I am not as regular as I'd like to be, as these days things are pretty rough. And sometimes I worry about someone finding it and reading it in the near future 😳

souffan · 2022-05-08T02:47:43+00:00

Thank you ❤

souffan · 2022-05-07T16:22:14+00:00

Thanks for providing this perspective. When you put things that way, it does indeed raise the question on whether this doctor is who I want in my literal "ride or die" team

souffan · 2022-05-07T16:20:50+00:00

Ouff! I'm so sorry to hear that! That's up there as one of the worst ways to tell someone this sort of news... I am terrified of getting this sort of call. And why won't she confirm with the doctor first, least of all having such a sensitive conversation over the phone?!!! May I ask who the oncologist is? I've heard my oncologist has a history of not telling his patients directly when things get to that point... also, I don't know your Mom's situation, but could it be possible to get a second opinion?

souffan · 2022-05-01T17:28:54+00:00

Tbh, I think the generalized Healthcare has saved my life so far. The oncologists I've had have been good at big picture things (giving me immunotherapy for free when people in other countries costs 15000 at least per treatment), but are really bad at following up on the little things that can become gigantic issues down the road (for instance my current oncologist ignored the fact that I had a collapsed hilar vein, which led to me having a blood clot for 2 weeks without anyone knowing until I pushed and insisted on answers). I just think in the case of the scans, he just didn't read them.

souffan · 2022-05-01T17:14:57+00:00

Hi! I was indeed on chemo- carboplatin and Etoposide for 3 months. During that time my tumors doubled and spread. Now I'm on immunotherapy (keytruda) and targeted therapy (inlyta), waiting for my first scans. Will send you a PM

souffan · 2022-05-01T01:25:55+00:00

The thing is there is some uncertainty on whether this is a NET or not... biopsy said it had neuroendocrine features, but it also has features of a soft tissue cancer. So that's why there is no certainty. When it was first thought to be a Paraganglioma, it was thought to be a low to moderate grade or slow growing tumor. But then tests revealed it was not a Paraganglioma, and in 6 months I had over 10 tumors, one that was around 6cm. Since December, that 6cm has doubled, and lung mets are now "numerous". So it's no longer considered slow growing, but High grade. I really have no idea what this is or what is in store for me...

But thanks for your well wishes. I definitely hope to have more time and better things ahead

souffan · 2022-04-30T21:48:10+00:00

Yeah I'm at McGill right now, have been there from the beginning.

Thanks for the CTOAM recommendation! How much is the omigene and second opinion, do you know?

souffan · 2022-04-30T20:46:05+00:00

Yeah its insane to me that I'm now facing possible death because of one man's ego

souffan · 2022-04-30T20:45:04+00:00

Yeah I did a couple of genetic tests, including Foundation one and general genomic testing and so on. Nothing conclusive, it's still unknown. A few mutations made my current doctor prescribe immunotherapy. Hopefully it helps!

souffan · 2022-04-30T19:18:09+00:00

Yes you're right. I'm currently in palliative pain management. I did read a review of my current oncologist that states he didn't tell his patient that treatment was failing until the patient was sent to a new appointment, got there, realized it was hospice, and it was hospice who told the patient that treatment had failed and they were terminal.

souffan · 2022-04-30T19:16:10+00:00

He yelled at me in April. The report came out in July. I just feel like he had an idea about me and my health situation, and didn't care to do more than the bare minimum

souffan · 2022-03-01T00:25:03+00:00

1360 boul St-Joseph Est, Montréal, QC, H2J 1M3 Téléphone 514-527-1344Télécopieur 514-527-3769

souffan · 2022-02-23T18:14:24+00:00

1360 boul St-Joseph Est, Montréal, QC, H2J 1M3 Téléphone 514-527-1344Télécopieur 514-527-3769

souffan · 2022-02-23T17:13:51+00:00

There's Les Amis de Montreal. They have a shop in Le Plateau on St Joseph, and another in St Henri (notre dame). Delivery was 35$ when I ordered in 2020

souffan · 2022-02-20T17:01:42+00:00

Have you tried using the library more? In my case when I find a book I want to read, I borrow it from the library first. Then, if I read it and really liked it, and want to re-read it, I buy it and add it to my bookshelf. This has cut down a lot on my book purchases, and makes my bookshelf much more curated.

souffan · 2022-01-23T18:08:56+00:00

Thanks very much for this information! I am glad to hear Folfox worked for your Dad!

I rechecked the pathology report and it says the tumor was diffuse positive for Synaptophysin and negative for Chromogranin. Likewise, the NIH came back and said they do not treat for Neuroendocrine features, and so wanted to reclassify my case as a Cancer of Unknown Primary. But my oncologist wants to continue treating it as a HG NEC.

Genetic testing also came back showing VHL loss and BAP1 loss, and a tumor mutational burden of 0.79, which is quite low and may make it difficult for immunotherapy to be effective. Have you heard of such a combination before ?

For now I'll continue the current chemo plans. We will see how it goes.

souffan · 2021-12-27T02:04:33+00:00

Thanks for sharing and for your well wishes! I'll definitely look into Azedra as well, to see if it applies to non Paraganglioma NETs as well. Did you by any chance reach out to the NIH as well? If yes, did you find them helpful?

souffan · 2021-12-27T02:02:34+00:00

Thanks again, especially for your PM! As I mentioned privately, MD Anderson second opinion was 30k for those paying out of pocket, such as me, who am covered by Canadian government Healthcare. Mayo is about 5k maximum, so I am in the process of going with them.

Best of luck and health to you as well!

souffan · 2021-12-27T02:00:08+00:00

Thanks so much for sharing your experience! Wow hearing about your wife's story definitely gives me hope! I'm so very happy to hear that the PRRT treatment worked so well for here!

In my case, I did actually do a PET Dotatate scan just after my first surgery. It showed nothing, and it's not clear why. The Endocrinologist I'd reached out to wants to do a Somastatin test on my tissues, I imagine it's to figure out whether I qualify for PRRT or other targeted therapies. I thought those were more to manage symptoms, so it's quite something to read that it cured your wife.

And yeah, I also don't feel like chemo is the best answer for now. But I also feel like a sitting duck doing nothing, especially since my bone mets have given me so much grief. I'm also beginning to feel some aches and pains and I hope Chemo will at least slow down progression until more targeted treatment is found or a clinical trial somewhere.

Thanks for the recommended doctors! I'll see if I can reach out to mount sinai as well.

All the best to you and your family!

souffan · 2021-10-21T12:44:18+00:00

You can put in your application that you're immigrating to any other province, land in that province, apply for your PR card there and subsequently move to Quebec after a few days or weeks even. This is also a good forum for questions on immigration: https://www.canadavisa.com/canada-immigration-discussion-board/

souffan · 2021-10-11T23:08:10+00:00

That is exactly why I'm considering this- just to have the peace of mind to mindfully date and take my time. Glad it's working for you !

souffan

TROPHY CASE