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Update

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Update

Posted By
MarkR
6/25/2020 12:53am
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Replies: 12

I haven’t posted in a while as things have been getting quite difficult and needed a break. Have been on the Ribociclib/ Spartazimulab trial and scans 8 weeks ago showed some growth in groin node, shrinking in lung and stable liver. Went for MRI / CT on Tuesday and unfortunately it showed up 7 brain mets the biggest of which is 1.5cm. Was a bit of a shock!!

We were lining up a TIl trial for me but the brain mets rule that out so not many options for me. I plan to start Temolozimide on Monday and should have a view from the radiologist for what they can do tomorrow. It seems I need a period of stability to join any form of trial so hoping this can all work in combination to give me some results. If it doesn’t they have given me 3-6 months. With young children this is all a bit grim.....

Summer S. - (6/25/2020 - 5:18pm)

Hi Mark,

I feel the past few months have been really roughing all of us up

With every new protocol it is 50-50% chance and when it works, it just works.

For us chemo was one of the very last options and in combination with radiotherapy it worked for a while and gave us a much needed stability and break to keep going.

I hope it works even better with you

Love,
S.

gopher38 - (6/25/2020 - 7:38pm)

Mark, that's tough to hear. I just remember MelMike who sounded like he was out of options a few months ago, and then found a trial (or two). I hope your Temolozimide and radiology works, and - if not - that your onc keeps looking for more options. I'm hoping for the best for you.
Warren

Mark_DC - (6/25/2020 - 11:06pm)

Dear Mark,

Am sorry for the bad news. i hope that the radiologist can do SRS and get rid of the brain mets quickly, and then you can revise course with TIL or other options.
Thanks for posting and I hope the radiologist will help out.

best wishes Mark

tedtell1 - (6/26/2020 - 7:59am)

Mark;
Well that news sucks. So sorry that you have been having such a hard time. I hope and pray that your doc can find some good alternatives for you and that they work. Are you going to have radiation on the brain mets? Keep us in the loop if you are feeling up to it!
Blessings and prayers coming your way.
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

Bubbles - (6/26/2020 - 11:56am)

Oh, Mark! So sorry for the heartbreak and misery!!! I know having young children only makes it more difficult and poignant. I am sending every good vibe in the direction of you and yours. Hoping that radiation to the brain mets can set you back on the path of TIL or some other more effective treatment regimen. Hang in there. Wishing you my best. c

jbronicki - (6/26/2020 - 11:45pm)

Hi Mark,

I know myself and the rest of us on the board are always anxious to hear how you are doing. First, I am so sorry you are going through this and getting this type of information. I have a child and know that many on the board have been through this with small children, really no words for the that. I have a friend of mine who is about to undertake Whole Brain Radiation here at MD Anderson so I'm been researching quite a bit about the benefits of WBR vs. Gamma Knife, etc. depending on the number of metastases and the pros/cons of both approaches. I'm sure the radiologist will give you the best options based on your particular situation which may include Gamma Knife/SRS. Like everyone else, just keeping all fingers crossed that you can get this treated/mitigated and then start trial or TIL. We are holding you and your family in our hearts Mark, you have brought us and others so much goodness, will be sending it right back to you. As always, if you need to come to Houston, we are here.

Jackie <3

MarkR - (6/27/2020 - 2:59am)

Thanks all for your comments
Had some good news yesterday that they can treat the brain mets with SRS which is really good news. Am hopeful the combination golf some immunotherapy swirling around combined with SRS and chemo will be enough to get me stable for a while.
In the meantime I have been investigating self pay TILS and hope to see a consultant soon. Will keep you posted
Best wishes
Mark

sing123 - (6/27/2020 - 2:08pm)

Hi Mark I have been following your posts and am
so sorry to hear of your latest setback. Just wanted to add that I am currently doing SRS for three brain mets. It is going fine. I know yours will too and I hope they do the trick to stabilize you. My very best to you.

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

Mark_DC - (6/27/2020 - 2:24pm)

Dear Mark -- am glad they are able to do the SRS. This should work, and also in conjunction with the immunotherapy I hope that there is an extra effect.
Good luck Mark (from DC! wishing I could pop back to the UK for a few weeks)

jbronicki - (6/27/2020 - 2:28pm)

Ditto, so glad to hear that are moving forward with SRS!

Jackie <3

MelMel - (6/27/2020 - 3:52pm)

Hi Mark, glad you seem to have an excellent treatment plan. When I saw a neurologist and a radiologist re: brain mets both had stated that they can do radiation to any tumor smaller than 2.5 cm. The radiologist clearly said that he would do radiation to up to 18 tumors just to avoid entire brain radiation. I have a friend who had her foot melanoma spread to the groin and eventually the brain. They did brain radiation and it did work but two weeks later she ended up with multiple melanoma nodules in the brain. At this stage she chose to do the chemo route for 6 months. This got rid of her brain mets and she resumed therapy on Opdivo only. Two years later she got an abdominal metastasis which was surgically removed last fall. She is NED ever since her surgery. I am hoping that radiation will do the job but there are many avenues and always remain positive and optimistic. If there is a will, there is always a way.
Keep us updated on your progress.
Melanie

MelanomaMike - (6/30/2020 - 3:17am)

Brother Mark! we'll gosh darnit man, the news you gave was bitter sweet I mean, when ya listed a med called "Sparta" zimulab I thought the rest of your post was gunna be excellent, hell, with that name you have the ghosts of the Greek Warriors of "Sparta" on your side and they still could be lets see! just hold on brother, hold those kids of yours, do what your able with them and "ignore" that stupid ass 3 to 6 months death sentence, just before I left Kaiser last year to my new clinic, like a dumb ass, I asked my oncologist what am I lookin' at? she new the answer right away which was odd, she said less then "one year" . Then, that other oncologist I told you all about that I saw, just before I REALLY decided to leave that place, he said less then 6 months if I'm lucky, I'm still here Mark, those timeliness where Not accurate unless I don't wake up tommorow morning. and that is a VERY small chance. So ya see, those time lines are purely statistics mixed with playing God and I don't find that funny at all, we ourselves, the patients of cancer or any other illness will know when the time comes, it's a feeling, an unfamiliar yet undeniable feeling, one who has to ask is far from death...
Love ya my brother, I'll be following you, I'm back.....Melanoma Mike

What doesn't kill you only makes you wanna Go After It And Kill It!

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