Good News/ Bad News but overall great

Posted By
BillB
8/9/2018 5:30pm
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Replies: 7

I completed Keytruda Treatment #18 and my three month CT scan yesterday, results of scans today still NED. Tomorrow is my one year anniversary( if we want to think of it that way) of advancing to stage IV with nodules in my right lung. The harder decision I’m dealing with right now is how long to stay on Keytruda. I had a very fast complete response and my doctors felt I should have went off last January. I have now had  four clean scans. I’m going to start extending out the treatments dates to five weeks until the end of the year then make a decision whether to stop or not. I have no basis for extending the time periods except for it helps my brain cope with it a little better and keeps some Keytruda in my system. My oncologist won’t make me  go off but because of the rapid and complete response believes it’s OK to stop. I go to MSK for treatment and these are some of the top melanoma specialist in the country so even though I trust there advice, my brain seems reluctant to stop treatment. This will certainly keep my brain busy for the next three months. So that’s the good/ great news.

Not so great news I also got notified today that I tested positive for Lyme disease, and there is a good possibility that I got the Zika virus during my fishing trip to Costa Rica in late June. Will find out those test results next week. 

Overall a great day and I do wish that everyone fighting this disease keeps moving forward. Also, a great thanks to everyone on this board for being so participative, I learn everyday and truly wish everyone the best!

Bill

 

 

Bill!  That is great news!!!  You will figure out when being "done" is right for you.  Sorry about the ancillary results.  Melanoma gives us that, too!!  HA!!!  Thanks to melanoma scanage I  know I have major gall stones and a uterine fibroid!  They have bothered me not at all!!!  So, I let them be.  I am not an infectious disease doc, but as far as I understand it...since you did not have a baby during the acute phase of your Zika exposure and are having no signs or symptoms that can be related to Zika or Lyme disease....you are probably good to go!!!  

Sort of similar (but backwards) story:  When I got pregnant with my first baby I had been working with super sick kids (many of whom had CMV - a devastating virus) for more than 5 years, so my OB wanted to run a TORCH titer.  That test looks at whether or not your are positive for having been exposed to Toxoplasmosis, Rubella, Cytomegalovirus, or herpes.  I wanted them all to be POSITIVE!!!  Because, if they were I would not have to worry about exposure during my preganancy, as that is when these organisms can be devastating.  I was negative for everything expect for rubella...as I had been vaccinated for that!!!  Guess I have mad handwashing skills!!!

So happy for you!!! love, c

Hi Celeste, always good to hear from you. You might find this interesting. So the most common side effects of  Keytruda are fatigue and joint pain, but you can have chills and everything imaginable too. Well, whether it was the Zika or the Lyme, about 2 weeks ago I really had fatigue , chills etc. if you look up 100 diseases, I bet you find that most of them list fatigue, joint pain chills etc. so it does make it difficult to determine where the Keytruda side effects begin and end when compared to a majority of the other somewhat common ailments we can contract. Interesting, maybe. 3 weeks of doxycycline should take care of the Lyme, and if I had the double play, there’s really nothing to do about the Zika. All is good.

Glad you didn’t get sick helping all of those kids, it does take special people to do that work. Thanks again for your blog and participation on MRF. Your always welcome to express your insight on how long to stay on immunotherapy, I will listen. I have been on Keytruda for a year, and am considering going quarterly in 2019, similar to your clinical trial. I did inquire today how long the Keytruda stays in your system and my oncologist said they have detected it on the T-cell between 3-6 months. Might be worth keeping it in my system a little longer without having to get infusions every three weeks. Something to think about.

Bill

NED is always good news--congratulations! 

October 2017 primary scalp WLE; SLNB; partial neck dissection. July 2018 recurrence in neck. August 2018 second partial neck dissection. September 2018 started Nivo. December 2018 brain met + recurrence in neck.

 

GREAT NEWS!!!!!  NED are my favorite 3 letters to read!!!! Congratulations and best wishes always!! 

Kelly :)

A Melanoma mom ❤️

Despite the bad news mixed in, I’m doing the NED happy dance for you here in Ohio! Good luck in figuring out your next steps and please keep us all posted on what you decide! Cheers to you!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

Thats awesome news!, i either forgot you where NED or didnt read a post or two that you where! hell ya brother!, i hear ya on the "If" you should stop the Pembro or not, its like taking your Car into the mechanics to have her fixed yet you continue to take her in to do the same job over & over to make sure shes fixed lol...is there any "data" that prolonged treatment is essential? i do know for a fact if its gone one minute, doesnt mean it wont come back, thats the nature & behaviour of our shared desease, Melanoma...Follow the specialist "and" your gut instinct, i sure wish the ol' Keytruda worked for me my first time doing treatment, and we gave the Melanoma demon "7" bags of it & it didnt faze the ol ugly monster...by the way, today i completed Combo #4 of Opdivo & Yervoy {Yervoy has ended} and will continue Opdivo till further notice, bring on my scan!!...Mike

Im Melanoma and my host is Mike..

www.covvha.net

Thanks to everyone for thier kind words and support! I deeply wish the best for everyone fighting the battle.

Bill