Malignent Melanoma Survivors who climb

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SCseagoat

Trad climber

Santa Cruz

Jan 19, 2011 - 03:15pm PT

thinking of you for your Doctor's appointment today. Susan

Disaster Master

Social climber

Born in So-Cal, left my soul in far Nor-Cal.

Topic Author's Reply - Jan 20, 2011 - 04:20pm PT

News from the Doctors:

The pill still seems to have stopped working. I want a scan to call it. It needs to be a 20 percent overall increase in tumor mass since the last scan to kick me off the study.

The next logical step is an "MEK" trial. But there is not one in SF area. Ruth found one recruiting in LA. I e-mailed them and will call to follow up. That would mean some travel / re-location, who knows. Locally the only options, as of now, that I am considering include:
-Interlukin 2
-Targeted radiation to shrink the main mass in my groin

The radiation is an option because the pain is SO BAD now, and I have seen what it can do if it gets worse. But I don't want to irradiate my "junk" either!

Interlukin 2 has the best response of a non-experimental non-CHEMO therepy.

I really don't like any of this stuff. But I am past the alternative window. This sh#t is growing very fast and it hurts.

So still in the info / transition stage now...

Disastering on,
Paul

Mighty Hiker

climber

Vancouver, B.C.

Jan 20, 2011 - 08:25pm PT

Paul, I haven't added to this thread previously, but not for lack of thinking about it. It's hard to know what to say or do, beyond saying best wishes and hope, for your health and for successful treatment. I'm not a praying sort, and can't pretend to be. I can't "send" you anything. All I can say is that your fortitude is something greatly to be admired, and I appreciate the trouble you take in posting your reports and photos. Good luck!

Brian

climber

California

Jan 20, 2011 - 09:09pm PT

Sorry to hear the update Paul.

What the hell is the point of kicking people off the study if it's not working perfectly? Won't that skew the results to make it look like the drug works better than it does (i.e., if you boot all the people for whom the drug is not working 100%)?

If the new drug is helping, even if it is not shrinking the tumors and it is just slowing or delaying their growth, I hope you manage to stay on the study. If not, I hope that either the radiation or Interleukin can provide some relief. It's a tough hand to play, but you are doing a fine job of playing as well as you can. Good luck.

Brian

SCseagoat

Trad climber

Santa Cruz

Jan 20, 2011 - 10:51pm PT

Hi Paul, I am so sorry to hear you are in pain. I hope your doctors are helping you with that. Also, I hope one of the other options will be the ticket to beat the cancer back. Hugs to Ruth, too. Susan

blackbird

Trad climber

the flat water trails...

Jan 20, 2011 - 10:57pm PT

BIG HUGS to both of you... You are in my thoughts and prayers.

pat

Trad climber

estes park

Jan 20, 2011 - 11:01pm PT

Paul, I don't know your whole history but what about ipillimulab(sp) or ipi? It is a drug that shows complete remission in some melanoma patients that can be offered as compassionate use (you don't have to go through a trial to get it). My apologies if you already know about this.

-Patrick

Iclimb5.1

climber

Jan 20, 2011 - 11:27pm PT

Hi again Paul, Vicky here.

OK, here are the pics I promised...

Fun times!

I'm also going to post a couple of poems on the poem thread...one of which I'm not sure you got via email.

Love,
Vicky

Disaster Master

Social climber

Born in So-Cal, left my soul in far Nor-Cal.

Topic Author's Reply - Jan 21, 2011 - 08:04am PT

Jeff and Vickey,

Cool shots. Good memories. I surprised Jeff with the airline bottles at the summit. Huge view! That trip had it all: bears, wasps, a gun and summit.

what about ipillimulab(sp) or ipi?

Pat,
I have loked into it. It is a posssibility, but the sucess rates are about the same as Interlukin 2 and tha hs a proven track record. Basically, all options come with small odds, big side effects which make NONE of them apealing.

pat

Trad climber

estes park

Jan 21, 2011 - 01:06pm PT

Paul,

The difference as I see it between ipi and interluken or chemo is that the response rate with ipi is slightly greater, and is much longer lasting.

"It is being tested in advanced (phase III) trials by itself and in combination with vaccines, other immunotherapies (such as interleukin-2), and chemotherapies (such as dacarbazine). Overall response rates range from 13% with ipilimumab plus vaccine in patients with stage IV disease to 17% and 22% with ipilimumab plus dacarbazine or interleukin-2, respectively, in patients with metastatic disease. Responses have been long-lasting, and among those experiencing more severe side effects, even higher response rates have been seen (up to 36%). These results indicate that more than one-third of ipilimumab-treated patients with advanced melanoma experience a long-term survival benefit, a rare success story in the treatment of this disease."

My mom is stage 3c right now, and after a lot of research on my part I think if she ever moves to stage 4 (I hope not) ipi seems like it would be the best option. Advanced stage 4 patients have seen a complete response with it. I think immune activating drugs might also be more potent in younger patients, but that is just a guess. I realize this is an extremely difficult decision so i'll step back, but you might want to take a closer look at it.

-Patrick

Pastor Dave

Social climber

Yucca Valley, CA

Jan 21, 2011 - 01:22pm PT

To: Paul, Ruth, and all Paul's friends. Some people are rich with silver and gold and all other forms of "wealth" Paul is rich beyound measure with LOVE (i.e RUTH) and a host of true friends old and new. Thanks to all for your love and support!
Paul's Dad "AKA Pastor Dave"

yllw2lip

climber

Orange, CA

Jan 21, 2011 - 01:53pm PT

I have been reading your posts and following you on Supertopo, just signed up so I can comment on your thread and show you my support and love.

You are an amazing and inspiring human being and I am proud to call you my brother. I and all my friends and my church continue to keep you in our prayers and pray for a miracle and your complete recovery. And of course, if no cure then at least a not so miserable exit from your journey in this life. I hate to think of you in constant pain, although I know you are... which is what makes you such an amazing and inspiring person, that you continue to do what you love and don't let your physical shell keep you down. You rock!! ;-)

XOXO your lil' sis

SCseagoat

Trad climber

Santa Cruz

Jan 22, 2011 - 12:57am PT

Dear Paul's Family...Thank you so much for logging on and seeing the out pouring of love, compassion and concern for Paul. He has meant the world to me and so many others on this forum. I am currently in chemo for ovarian cancer and got to meet Paul in person in December. I have communicated with him and followed his Super Topo posts. I cannot express how much he has helped me in understanding this journey. It pains me so deeply that he is hurting right now and I hope for him every day that some of his new options will kick arse. Susan

PS: He is the toughest guy I have ever met with a most beautiful heart and soul.

nita

Social climber

chica from chico..waiting on spring days..

Jan 22, 2011 - 01:18am PT

Hi, Paul's Family, Thank you for posting up.... Many of us have never met your son, but he has touch us deeply with his beauty, honesty and gift of writing. Joining you in positive thoughts and prayers for your son.

Both Paul and Ruth are amazing people..sending you both> much *Love.
http://www.youtube.com/watch?v=PlzIRXzcjY8
Salud..
xo
nita..

Disaster Master

Social climber

Born in So-Cal, left my soul in far Nor-Cal.

Topic Author's Reply - Jan 22, 2011 - 11:16am PT

Crock,
I checked out your link. Unfortunately, the drug you saw IS the one I am on now that is not working anymore. The problem is it changes names, and is called different things in other parts of the world. PLX4032, RO5185426, RG7204 is the same thing.

Oh, well...

SCseagoat

Trad climber

Santa Cruz

Jan 25, 2011 - 09:49pm PT

Thinking about you Paul. I hope you have been able to get some measure of comfort. Susan

Crimpergirl

Sport climber

Boulder, Colorado!

Jan 25, 2011 - 10:01pm PT

I can't add much to what has been stated. We are thinking of you, Ruth and your family.

Disaster Master

Social climber

Born in So-Cal, left my soul in far Nor-Cal.

Topic Author's Reply - Jan 27, 2011 - 10:01pm PT

Ah, NUTS! My nuts. Ouch! Why, out of all the parts available? Cancer has chosen the sensation of getting kicked in the huevos as it's 24/7 gift to me.

I am nodding off now from pain killers, but no more for me. Don't want to OD. But I can still feel the pain. A year or more ago I would be grabbing a bomber of IPA or anything else to keep trying to get rid of this. But I decided not to drink as a reaction to pain or depression, so... Damn it.

I have been trying my pranayama breathing exercises. But there is a returning lump under my ribs that catches back and forth with my breath. Very odd and uncomfortable. So even yoga is a pain.

Sounds fun, huh? So much for the boo-hoo.

The new facts:

After reviewing choices we have a plan, sort of. Ruth has spent lots of time on the phone with hot-shot docs and got good info. I have been too spun from pain to deal with this.

-Radiation will likely burn my already senstitized skin. And it means time off the BRAF drug before and after treatment, up to a month.

-Interlukin 2 is too much of a step in the bed -ridden direction before I get there on my own.

-We found a trial working with BRAF and MEK, the two receptors that seem to be my best hope.

The tumors may be growing again, even though I am still on the BRAF pill. But they would likely explode if I am taken off the drug entirely. The MEK drug showed poor results alone (in other patients, according to Ruth's phone calls.), but maybe not in combo with BRAF. That is the study we are looking at now.

Pros: I stay on some sort of drug that is likely at least slowing the tumors. This is the next trial already suggested in the past as a future hope by my docs.

Cons: The study is only in LA and does not start for two more weeks at least. It would involve at least temporary relocation. I don't want the disease to BE my life. And Work? $ is gone.

The test may be picked up here in SF in the future and I MIGHT be able to transfer back north...

I just want to be a real boy again, like Pinoccio.

I get scanned in SF next week. This will determine if I get more wonderpills or not. It could go either way. I think if they take me off them because of "Protocol" I will weaken quickly. With them... time until the train rolls into the station perhaps.

Ow, my balls...