@doublett
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- June 22, 2020 at 10:20 pm
Hey hi there Laura
I am having my 3rd or 4 infusions on Wednesday. (I had brain met that was zapped on March 20th with gamma knife). My last infusion will be Jujly 16th. Then I will be taking NIVO on its own for 1 to 2 years.
I have no Thyroid so am already on Synthroid. Make sure they are checking your T4 and T3 and TSH all the time. Endocrine issues happen on this combo. Also I put myself on a strict diet. No dairy, ( I am a pescatarian) I also put myself on a preventative colitis diet and also stopped drinking my Chardonnay- any alcohol because I have a very sensitve tummy. Ive read other people do this and it really helps. I am trying to avoid colitis at all costs. Those are the biggies these combo drugs can cause. But those I am more sensitive to. Look at the adverse side affects and their symptoms. Just be on top of it all the time.
You can do this.All my very best ,
Tracey from Toronto, Canada
I did have to get a sleeping pill as man oh man this stuff keeps me up all night long even though I feel exhausted!!!! So werid.
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- June 22, 2020 at 9:51 pm
Hello Cindy
My name is Tracey I live in Toronto Ontario Canada. My name on here is DoubleTT. Was diagnosed in December 2015. Surgery January 2016. Lesion was on back left shoulder. Nasty deep 4+ ulcerated thing. Turns out my gene type is NRAS. uggh. Did a trial as there was really nothing for me as I was considered 3C as I had a bunch of in transit satellites in my pathology. No lymph nodes… but it was already on its way. We did trial and watched me like a hawk. It returned in January 2018 to my T12 vertebrae. Got it zapped 2x with SRS . They call is Stereostatic Radio Surgery (SRS) when its to the body. Started Nivo in April for one year.Four months later, Feb 2019 my melanoma returned for a second recurrence to my brain… no where else. One small lesion to my posterior temporal lobe. My care is with Princess Margaret Cancer Centre in Toronto (best Cancer Centre in Canada and for research – top 5 in the world). Docs told me they use Gamma Knife for under 3 lesions depending on size and their proximity to each other. (Not SRS which is for the body.) More than that they consider whole brain radiation. They prefer Gamma Knife as it helps with the risk of necrosis. My brain was already swelling a fair bit so who knows what will happen. March 20th I had the Gamma Knife surgery. May 14 started Combo immunotherapy with Nivo and Yervoy. The docs here forecasted this I guess because they held back back the combo immunotherapy until now. Wednesday will be my 3rd of 4 infusions. When I finish the combo therapy on July 16th with fingers crossed the 4th infusion , I am being put back on Nivo again for one to 2 years. So Celeste is correct. They like to zap the brain and give the combo of immunotherapy. In addition to the fact that I have already been pumped with Nivo for one year and the recurrence was in my brain x1 lesion we are hoping this will silence the beast for as long as the drugs be my friend. The research that Ed and Celeste have given is exactly the protocol my docs are doing for me.
It all sucks but we are at an advantage with the research findings that are teaching these docs the best protocols to keep us going. In the meantime I keep get the test searching for specific proteins etc so I m in the system for the new trials coming up or happening. Was tested for TIL therapy unfortunately I don’t have the right proteins they are looking for. But there are other brews coming!
If I have rambled too much its because my brain is scattered from zapping and the drugs…lol honest!!! PS You can do this but like Ed , Celeste and the other smart folks on here.always insist.. you must be with a leading oncologist team in Melanoma…
All my very best and routing for you !
.. PS I am having an MRI on Friday night to see how my T12 and now my recent brain zapping are coming along. Then August 20th the whole body etc CT as a new baseline before I start NIVO. -
- February 12, 2020 at 3:18 am
Hi there Jennifer
I had the same thing we I was on Opdivo. I had lost my Thyroid to thyroud cancer in 2011 so was already on Synthroid high dose meds. Fast forward to 2016 and I get melanoma. Half way through Opdivo liver enzymes were going up. Smart docs at Princess Margaret Cancer Centre in Toronto Canada did a bunch of extra thyroid testing my free T4 numbers were climbing way too high which makes the liver go crazy. So we set a course to get my TSh FreeT4 T3 numbers where they should be and voila! my liver was happy again. I also was banned from Tylenol. Some peeps on Opdivo have issues with liver enzymes if taking a lot of Tylenol. Hope this helps…Hugs Tracey -
- February 12, 2020 at 2:55 am
omgosh so happy you reached out!!! I know the very wise ones on here with lots of knowledge and direction will pipe in soon. I am from Toronto Canada. You must must make that drive. No one can work as hard for you other than a Melanoma expert. There is no waiting ….you need the very best care and the best plan. You can do this. It’s scary but when you are in the right hands of experts you will see that future. And yes I had Mets to the spine. SRS (radiation surgery and nerve pain medicine can help the spine and tummy pain) Melanoma experts help us in this regard as well. And if you are at a top research hospital they will study your tumour and know what markers to look for to see if you are getting response. Again you can do this. Is tough and a beast. Just wait the other good folks who are the American experts will give you some amazing advice. Be strong , hold on tight!!! Hugs from Canada. Tracey -
- February 16, 2020 at 2:42 am
Hello! and thank you so much for sharing this story…your wife had some serious brain mets. I am wondering about the necrosis as well…but having heard your wife was given a treatment plan for it and its resolved is so fantastic to hear…happy for you both!!! -
- February 12, 2020 at 9:10 pm
ohhh thank you so much Celeste…I really need to hear success stories. It just sucks …all of this. I hope my gene type NRAS is up to good fight. In the video Ed sent me I watched all of it…I was fascinated to hear that probiotics, antioxidants are bad and being vegetarian with tons of fiber is the way to go. I fully committed to it almost 2 years ago but now I need to find a way to inject tons of oxidants into my brain like they did to the mice!!!!. I need to get positive it’s really hard somedays. Wish I could have coffee mornings with you guys down the street. Thanks so much for being you and everyone else on here…warm hugs to all -
- February 12, 2020 at 1:58 pm
hello Ed
This information is excellent. Thank you so much it makes me feel more confident that I must be on the combination therapy. My docs also old me about their research that SRS to my spine and now my brain must be co treated with combination immunotherapy. They only gave me Opdivo after my spine met. I think they knew I would progress at sometime so held off with the big stuff for this brain met I have now. I appreciate all of this info. Thank you so much. Tracey
