So much for pembro, no longer stable

Posted By
aldrichdesigner
10/10/2018 1:08pm
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Replies: 6

Well my stable status was short lived and frankly probably never even existed in the first place, they just weren't looking in the right place.

After I had another spinal compression fracture, they told me there wasn't anything they could do that any further surgery to my spine would probably make me worse or paralyzed. Well pain just kept getting worse and I ended up with a trip to the ER for stomach issues and they found a small spot that looked like progression on the CT so my Oncologist decided to order a full PET scan which I had yet to have at this time. We had only relied on CT and MRI up to this point.

Well the results came in and my disease has progressed to my lower spine and hip bone which is what is causing my tremendous pain in the sciatic area. It also lit up in my shoulder which I was afraid of but had just told myself that I had injured my rotator cuff and was just going on with my day but nope there is Melanoma in the bones of the shoulder.

So, more radiation. Here we come. I had really good luck the first time so we are going to give it a try in these spots since they weren't treated before. So they were able to get my sim done the next day so I'm hoping they send me my schedule for treatment today so we don't waste anytime. I'm ready for some pain relief.

I went from a fairly pain free lifestyle that included me walking with a cane sometimes and sometimes I could even walk unassisted and now within about a week's time, I'm unable to walk without a walker and even that is so painful that I can only go short distances before needing my wheelchair. I forgot how much it can hurt/suck when your really sick.

Once radiation is complete (2-3 weeks), they are switching me to Yervoy(ipi)/Opdivo. I've seen a lot of people having great success with this combo so I'm hoping it's my magic bullet. Pembro seems to work the same for everyone. If it doesn't get it within a year then it's not gonna get it and it's time to move to something else.

TLDR: pembro stopped working, disease progression in bones but only bones. Treating with radiation and then when all 10 treatments are complete, go on ipi/opdivo to hopefully kick the rest out of me and let me spend the next 17 years kicking it on this planet.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

In the Autumn of 2015 I had radiation to a rib that had melanoma.   I had less pain after this radiation.   I received Keytruda from November 2015 to March 2016.  In February 2016 walking became very painful and a March 2016 PET scan showed cancer in many bones and only in bones.  A biopsy confirmed melanoma.   I began receiving Yervoy/Opdivo on April 1, 2016.  I still receive Opdivo every 2 weeks.  My bone cancer seems to be gone.   I do have cancer in a lymph node.  I received Opdivo immunotheapy today.   I put more information in the Survivor Rollcall topic.   

Edwin,

Thanks so much for the encouraging story. I really needed to hear that because I was pretty beaten down yesterday by the news from the PET.

I'm just standing by as we wait for the call to schedule my first radiation treatment and get this show on the road.

Thanks again,
Jeremy

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

Sorry for what you are going through.  Certainly sorry for the decreased mobility and pain!!!  Hopefully, the upcoming radiation will help on all fronts.  We certainly have plenty of evidence that radiation WITH immunotherapy can be a good thing in melanoma.  (There are tons of related articles on my blog...just put "radiation and immunotherapy" in the search bubble if you are interested.)  I presume you are not BRAF positive?  Probably not given what you've noted.  Fingers crossed that you will see improvement soon.  I wish you my best.  Celeste

Hi Celeste, I came across this related article on Cancer Research Institute on radiation + Immunotherapy research in NSCLC (lung cancer), similiar but different cancer but the research is important. Hope you get a plan in place with your Oncologist soon, keep us up to date!!!Best Wishes!!!Ed http://www.cancernetwork.com/lung-cancer/eric-ko-combining-radiation-the...

Damn brother! Like my saying goes, " Somethings Gotta Give!!" Jeezlahweez! Like yerself, i did the Pembro treatment but only 7 bags of its deliciousness and my report was bitter sweet the 1st was anyways, 2nd CT scan revealed no improvement!, 1st scan showed some disappeared, some didnt grow, some got bigger, some shrank & i grew 2 new ones!..Now you where on it a year? I wonder why my Onco gave up after only 7 infuses? Where your reports better then mine? I think obviously for you to be on it so long, i hear it takes time for meds to really kick in, i dont know.....
I hope you can SHRINK that Sucker near your spine, i cant imagine that pain!.. Take care man, always in my prayers before i sleep, ALL of you's...

Im Melanoma and my host is Mike..

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