Emotional Roller Coaster

Posted By
jjk17
1/11/2018 6:14pm
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Replies: 6

The past 3 months have been an emotional roller coaster to say the least. After having a plan in tack, I was supposed to start tomorrow on my clinical trial, Nivo/Ipi. Got the word today from my Oncologist at Mayo Clinic that the drug company that had my tissue, needed more, due to the fact there were dead cells. There were dead cells, because my tissue samples sat in their lab over the holidays with no-one there testing them. After a long talk with my Oncologist we came up with Plan B. Being treated with Nivo every 2 weeks. I am very stressed to say the least. Looking for positive thoughts on this. Maybe this is all happening for a reason. I just needed to vent! Thanks in advance:(

Threefitty - (1/11/2018 - 10:23pm)

The "roller-coaster" is my favorite metaphor. I was diagnosed in March. Had a CLNR. This was essential to being qualified for a clinical trial, where I ended up getting Nivo (probably- it's blind) in June.

Now, Nivo is FDA OK for Stage 3, and the CLNR is more officially on its way out. 6 Months later.

I might have just done the Yervoy standard of care, kept the bulk of my armpit intact. Nivo would be there now.

Personally, I wouldn't have it any other way. I like having the physical injury to remind me of the real issue which was a much less meaningful surgical event. Yes, having the additional lifelong Lymphodema threat just "feels right somehow" now. Crazy.

I've been waiting for the "stupid horror story" like yours. Hasn't happened, but my point is that your ability to change tack on the fly shows that you are are strapped in well for the ride. 

I don't know about things happening for a reason, but it is a whirlwind time personally and historically. "You might have a terminal disease, or maybe not, but if you do, we might have the cure, but it might not work on you". It doesn't get much more uncertain than that!

Keep on ventin'. I remember stressing whether that (apparently essentially unnecessary) CLNR was being unduly delayed by a few weeks. Good Times.

jjk17 - (1/12/2018 - 5:49pm)

Thanks for the advice! You couldn't have said this any better! The waiting game is what is driving me insane or making me feel as if I have aged more! :) Keep fighting! Take care!

I know exactly what you're talking about.  I felt like I had gotten on an express train - no way to get off and not sure what the destination was.  I couldn't catch up emotionally.  Before I could process the fact that I had stage IV, something else came up.  I was playing catch up all the time.  

The waiting whether for a procedure or for scan results or to see if treatment is working can be draining.  This board is great whether you need to vent or just read up about what's going on with others.

Good wishes to you.

Jennifer

jjk17 - (1/14/2018 - 2:19pm)

If that isn't the truth! That is a very good way to explain it as well. I guess my biggest worry right now is, how am I going to feel...just becasue I feel good now, I feel myself. I know everyone reacts differently, but that's one of my concerns...

Another is the whole insurance thing...i really hope they will cover this.

Hello, Im about 5 months in with Nivo for stage 3B, after having all nodes removed from my left armpit.  So far so good, no real big side effects (pimples and minor rashes but that's about it).  I chose the Nivo over the clinical Ipi/Niv.   I go in every other week and this will be my 10th treatment and 3rd scan.  all clear so far.  Id be more than happy to answer any questions you have, and I wish you the best of luck.

jjk17 - (1/16/2018 - 9:12am)

Hi! Thank you SO much for responding! This makes me feel so much better. I know everyone is different and one may not react like the other, but this makes things a little easier!