- This topic is empty.
July 1, 2013 at 10:59 pm #21416
Just wondering how things are going with the trial.
Hope you are feeling ok and the side effects are minimal.
Post when you can.
Shirley ZJuly 2, 2013 at 7:11 am #61611
Hi, Shirley and thank you for reaching out. Haven’t posted due to being in bit of a frump …..depression, if you will. It’s not so much that there wasn’t immediate results (possible but not probable) but that, I don’t know, like the excitement is missing. I believe that the challenge, physical and mental excitement associated with the trial was keeping my mind off real life. And real life is watch and wait and not too terribly bright. Good to discuss it here I suppose. So I’ll keep the humor up and regroup. Maybe it should be asked….is this commonplace? ClintJuly 2, 2013 at 10:59 am #61612 Hi Clint,
Unfortunately waiting is part of the game.
As time goes on, things do get better as your life settles into your “new normal”, which will be regular doctor visits and scans.
Your trial sounds fascinating, BTW.July 2, 2013 at 3:25 pm #61613
I agree with Linny. It takes time. You will go through many different emotions. I was a mess the first year. Every time I did not feel well I would imagine the worst.
Its been 7 yrs for me now. Almost 4 yrs since my recur. I was not given much hope when I was diagnosed. All I could think about was if I would be around to see my grandbabies grow up. I don’t think about that much anymore. I live for each day.
It takes time to get to this point. You are early on in your diagnosis and it is never easy at that stage. It gets better. One day at a time. Hang in there.
Shirley Z IIICJuly 2, 2013 at 11:19 pm #61614
Thanks, Shirley and Linny. You’re correct, of course. The good news is that I don’t have to drive 7+ hours to get to / from San Francisco. By the time I got there my blood pressure was sky high. One of my satellites is bleeding and I wonder if, even while unresectable, they can do an excission just to seal it up. Any thoughts? Carvin1July 3, 2013 at 12:30 am #61615 Hi Clint,
I’m not sure about that satellite. They may just want you to bandage it. The best thing to do is check with your doctor. Where is it located?
Shirley ZJuly 3, 2013 at 3:06 am #61616
Thanks, Shirley. If I just knew everybody better we could sure have fun “hoe are you doing “. The bleeder is on the edge of the mass on my lower left leg. I won’t be far from my Dermatologist. I’ll just drop in and ask tomorrow. Be well.July 3, 2013 at 3:37 am #61617 Hey Clint,
Sorry about that lol. I guess that’s what happens when you
type from your phone. I guess I should just use the laptop but
but I always end up grabbing whatever is closer.
Shirley ZJuly 3, 2013 at 3:42 am #61618
Please. No sorry. We need all the lighter moments we can get.July 12, 2013 at 12:45 am #61619 Greetings. Early indications point to the trial (il – 12 & electroporation) not working. My tumor mass is growing rapidly. I meet with UCSF this Tuesday to discuss Yervoy treatments. Interesting part is that it seems they like the PD – 1 better but you have to have failed at Yervoy before acceptance. That’s a hell of a hurdle to jump through to qualify. I’m in a personal fight between living what’s left and “all in ” regarding treatments. Thoughts appreciated. Clint (carvin1)July 12, 2013 at 1:40 am #61620 Hi Clint,
Sorry to hear that the trial did not work out for you.
Are you BRAF positive? Zelboraf acts quicker than Yervoy and if your tumor is growing rapidly it would seem that Zelboraf would be a better bet.July 12, 2013 at 2:29 am #61621
Thanks, Linny. No luck there. But I’m KIP positive which, with $4.00, will get me a gallon of gas. Ha! It’s back to the quality of life question. Be well. ClintJuly 12, 2013 at 4:43 pm #61622 Sounds like it’s your insurance company talking, rather than your doctor. 👿
Yervoy is effective, but it takes time for it to kick in. Plus, your melanoma will get slightly worse before it gets better. Trouble is, doctors won’t know if it’s the Yervoy working or your melanoma acting up.
I hope the Yervoy works for you and that any side effects are minimal or non-existent. When Yervoy does work for folks, it’s pretty remarkable.
What is KIP positive? I’ve heard of C-KIT but not KIP.July 12, 2013 at 6:57 pm #61623
I’m so sorry to hear this. I would not give up yet. You are still
young (I thought you said 65 ). As Linny said it can take a while
To know for sure if the yervoy is working but some people can
achieve good results. In the meantime if it fails you do
have other options.
I agree with you about quality of life being important. Maybe
others will wigh in with suggestions as well.
Hang in there Clint.
Shirley ZJuly 12, 2013 at 8:58 pm #61624
C – KIT….sorry. Thanks for the catch, Linny. And thank you both (Shirley) for the insight. I’m known for not giving up. But I’ve also made strides due to accepting what is and working around it. There is a little fatigue. Overall I feel very good with no cancer related pain. I have an ugly leg but that’s why God made long pants. Thinking this interim time be spent relishing life, family and friends vs. the ups, downs, sickness and pain associated with the unknown. The unanswerable…..makes for sleepiness nights. Enjoy the weekend! Clint
- The forum ‘Melanoma: Stage III’ is closed to new topics and replies.