MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Hi to All of Jerry's Many Friends from MPIP,

I had the good fortune to spend over two hours today with Jerry in Colorado Springs.  He has been in rehab there for two weeks, after two weeks in Denver receiving emergency and acute care for an accident from horseback riding, when he was thrown, dragged, and kicked by the horse he was riding. I was not able to see him in Denver, and waited until he had recovered enough to have a visitor.  I was supposed to get together with Jerry before all this happened, and I have been following the updates on the OTBB about his progress.  It has been a long 4 weeks, but I have good news to share with you about Jerry.  I asked him if it was ok to post, and he wants to say hello to all of you.

Let me tell you - this guy is absolutely amazing!!!  Hearing more from Jerry and his daughter Tanya about the accident and the aftermath, it is miraculous he is here at all, but the story is even better than that.   His surgeon has done a really good job of putting his face back together but couldn't quite make him resemble Brad Pitt....lol.  Jerry is very lucid, and up and around, and will be discharged tomorrow - I think he is too much for them to handle :)  His vision is off somewhat and a bit blurry, which is understandable when you consider both his eye sockets were crushed, but has improved dramatically.  He thinks that he can get new glasses that will help correct his vision, and one of the nurses there is setting him up with her opthamalogist.  His short term memory is a bit fuzzy, but Tanya says he is improving every day, and she had been an almost constant presence throughout the last month who has made a world of diference in his recovery. 

I told Jerry that he has great support from his many friends here, and that so many of you would like to know how he is doing.  He wants you to know that he is so grateful for your support and good wishes, and that it has made a real difference to him.  Tanya has read him your posts, although he has not been able to get his emails yet due to some computer problems, whihc he hope to fix soon.  Jerrry has an indominable spirit and great sense of humor, which is no surprise to those of us fortunate enough to know him.  Jerry has been a wonderful source of support, information, and wisdom to me from the very beginning of my posting on MPIP six months ago, as he has also been for many of you over a long period of time.  So I wanted him to know, from all of us who know him (and those who have not yet had the pleasure) that we miss him on here and wish for the day to come very soon when he returns.  Jerry will be back for sure, and I want you to know that fact - you cannot keep this man down!  I thanked him for his being there for me, and for all of us, just as we are and will be here for him - and a big hug to go with that thought.

Of course, we covered a lot of subjects over the time we had, most of which does not deserve to be recounted here.  I have always been impressed with is knowledge about our disease, sharp mind, and quick wit, but I also now have experienced his caring, compassionate, and helping attitude towards others.  He really feels that this board has been a community to which he belongs and should contribute - and has.  Jerry told me some of the history of MPIP, as well as a number of stories.  Anyway, I felt that I was lucky to be able to finally meet such a special guy who is a true inspiration and as resiliant as they come - Tanya said there is no such thing as an "ex-Marine", and I think Jerry is living proof of that!

Jerry will move to Tayna's house tomorow and stay in Colorado for a while, perhaps weeks, before deciding what to do next.  Hopefully he will be giving you his own update soon!

Best Wishes,

Jim in Denver

 

 

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makedoandmend's picture
Replies 8
Last reply 9/25/2010 - 7:46pm

I posted a few weeks back about just being diagnosed.  I had an ulcerated primary on my calf at a breslow depth of 9mm and satelitte lesion beneath/next to the primary.  Pet Scan came back NED or "unremarkable" as it says in the report.   So that leaves me a stage 3 with a surgery on October 4th where they will do a sentinal node biospy and wide incision.  My onc gave me three options. 1) watch and wait 2) high dose interferron followed by the home injections 3) stage three ipilimumab clinical trial (he says the trial will have a placebo, but what about compassionate use?  So my question is what are the positives and negatives of 2 and 3.  Do I even need treatment?  The nodes in my groin are ned so I don't know if I need treatment. On the other hand the primary was very deep and ulcerated which leaves me with some bad percentages.  Also I'm thinking that melanoma is easier to fight at stage 3. Why not start the battle now rather than waiting till its at stage iv.   Any insight would be much appreciated. I've learned a lot over the last few weeks, hopefully I can contribute more on the board.  The strength and knowledge I've gotten from this board is invaluable. Thanks!
-pat on long island

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bill58's picture
Replies 16
Last reply 9/27/2010 - 9:37am

I am livid.

I was downgraded from stage IIIC to stage IV 2 weeks ago.  I previously tested positive for the BRAF mutation and the doctor wanted to enroll me in the trial.

I filled out the paperwork with tears flowing from my eyes from the news.  I was knowledgeable enough on the the trial protocol from my own research and reading other postings here to know that one of the qualifications was the failure of a previous treatment, or as the protocol states "failure of at least one prior standard of care regimen ".  The only treatment I had so far was 2 surgeries and radiation treatment, all of which were known to the "Melanoma" specialist.  i asked him if the Radiation qualified me and he said yes.  When I called today to check up on the paperwork to make sure things were flowing through the proper channels, I asked one of the assistants to confirm what treatments would qualify me for the study.

She got back to me and confirmed that radiation treatment did NOT qualify me for the treatment.  She also informed me that they had another person in the same situation as myself and that person was starting the DTIC/Dacarbazine injection today and just so he was on a biochem/immuno treatment.  After that fails, he can apply for the BRAF treatment after waiting the 30 day prior treatment window.  They must have known about this qualification a week ago to get that person scheduled for the shot.  Why they did not inform me at the same time, i do not know.  Why they did not inform me when I called on Monday, I do not know.  I guess I need to check out the side effects from that treatment, but I dont have too many choices.

That is what they want to do with me.  I will see the doctor next Thursday, 3 weeks after my last Pet Scan, start me on a single injection of Dacarbazine and after the 30 days I would be able to start the BRAF trial.  I could say I never heard of such a crazy thing, but I have seen other things like that on this board and other things that are even more crazy. 

I just wanted to let everyone know that their doctors don't know everything.  You would think they knew the protocols of the clinical trials that they were running, but I guess that is too much to ask.

I was planning on getting second opinions by Dr Kaufmann and Dr Gajewski, but I don't know if I can fit that into my  schedule without using up my remaining few vacation days.  I need to save 3 days for the day long blood tests every hour once I actually start the BRAF trial.

Enough for my rant for now.

Bill

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

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dian in spokane's picture
Replies 23
Last reply 3/8/2011 - 7:16am

NED! I'm so pleased to say that I have had another great scan result. The only thing that showed up was the old lung issues (not mm) and a lump on my shin where I tripped over the fiddle case and crashed to the ground last month. They clearly pegged it as an injury not a metastes.

I'm headed off to Las Vegas to celebrate!

Thanks for all your prayers and well wishes.

Yall have a great weekend!

 

dian

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Nebr78's picture
Replies 2
Last reply 9/24/2010 - 7:00pm
Replies by: washoegal, jag

If you have Melanoma and want to treat it, you better not have Heart Disease.  Tried  to get into a Clinical Trial, no luck.  Dr. says he can't treat it with anything strong that may stop growth because of the bad heart.  And it is bad so no arguement there.  I will not have any more Dr. appt. or CT Scans so that is that. Maybe I can find some un-orthodox treatment that will help. This will be my last post.

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Anonymous's picture
Replies 9
Last reply 9/25/2010 - 5:59am
Replies by: bcl, jag, lhaley, Anonymous

Early stage mel. Sore throat for a few weeks. Cough sometimes when talking. Hard lump is new.  Physician is sending me for a dental X Ray tomorrow, with an appointment early next week to determine next step.  Should I request an ultra sound?  Needle biopsy?   Very scared but trying to keep things in perspective.

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jag's picture
Replies 7
Last reply 9/24/2010 - 3:08pm
Replies by: Tim--MRF, jag, Anonymous, Sherron

I have noticed quite a few questions on here lately about navigating the social security/medicare quagmire.  I have luckily never experienced it.

Is there anyway we can get a FAQ area for this topic?  

Insert Generic Inspirational Motto Here

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Sharyn's picture
Replies 13
Last reply 9/25/2010 - 8:15pm

Well, it wasn't as smooth sailing as I had thought. After having all the preliminary tests and scans last week in Montreal, my Dr there called me last Fri to tell me my hemoglobin was too low (7.6), and if I didn't get it up within 5 days, I wasn't eligible for the trial. So I had bloodwork done locally on Fri afternnon, hemoglobin was 8.0, but still not high enough. So on Monday I went in to the Cancer Centre to have a blood transfusion -- 2 units. Then, on Wed, I flew back to Montreal on a wing and a prayer, hoping that my hemoglobin had risen enough. Good news, it was up to 10.8, so on Thurs, we started Ipi at 11:30. I had no adverse events, walked back to the hotel afterwards (20-25 min walk), then went to the airport and flew home late last night. This morning I feel fine, and I hope it continues. I've waited a very long time to start this trial, with lots of detours (gamma knife, genetic profiling, mastectomy, etc), so I'm delighted to be finally underway.  I'll update as things move forward.

Hugs

Sharyn

Stage IV

ILP, LND, PV-10, hysterectomy, GM-CSF, WBR, SRS, mastectomy, and now Ipi.  

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Lori C's picture
Replies 5
Last reply 9/24/2010 - 1:20pm
Replies by: Lori C, jag, Sherron, molly, KellieSue

Will's brain scan was clear, which was awfully welcome news.   He's tolerating the chemo well so far - this is round four.    In two and a half weeks, another CT scan to see how things are going....

Thanks for support and continued good thoughts.

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Marshipops's picture
Replies 3
Last reply 9/24/2010 - 11:03am

Hi, just thought I'd pop by and say hello!

I'm newly registered to the site, but sadly not to melanoma.  First dx in 1996, 1.2 mm melanoma removed from my lower back.  Naively thought that would be the end of it.  10 years later it returned to bite me on my ar*e once again.  Had large steak sized piece of rump removed but no further treatment.  A year later I discovered a lump in my groin, total groin and pelvis dissection followed.  Still no further treatment!  Currently on the observation arm of the Avastin trial and 2.5 years NED.

I'm loving the new look of the bulletin board, I never could get my head around how the how one worked, which is why I haven't joined up before.

Oh, and if you wondering what 3rd world country I live in not to have received any treatments, it's the UK!  Some of you may know me as Marsha from other sites... and this is the first time I've come across a place where my name was already taken!

Marsha x

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joy_'s picture
Replies 4
Last reply 9/23/2010 - 10:09pm

Hi MRF BB Friends,

My husband Bill will complete his 2nd week of high dose interferon tomorrow.  He's doing great other than the FATIGUE.  Wow... fatigue doesn't even describe it well does it?  Just curious approximately how long before this cr@p gets out of his system and he gets energy back after the last infusion. (He is not doing the 11 month self injections afterward).

Thank in advance for anything you can share.  Wishing you all the best in recovery and healing.

Tracy

wife to Bill, stage IIIc

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Tim--MRF's picture
Replies 20
Last reply 3/16/2012 - 7:14pm

Many of you saw the NY Times article this past Sunday, describing cousins, both with Stage IV melanoma.  They both enrolled in a clinical trial of PLX4032--the BRAF inhibitor by Plexxikon/Roche.  One cousin received the BRAF inhibitor and is doing well.  The other, who received the control, has died.

This raises a lot of questions about clinical trial design.  Our Scientific Advisory Committee has engaged in a very robust online discussion about this, involving about 150 emails!  I wonder what your opinions are on this.  Here are a few questions:

--Is it ethical for the control segment of a clinical trial to be a therapy that is approved, but is almost certain to be far less effective than the drug being tested?  (But, if you don't use a control, then how can you be sure the data are real and not because the patient or treatment team acted differently because they thought they were on a miracle drug?)

--If a person on the control arm does not respond to the approved drug, should they be allowed to "crossover" and get on the drug being tested?  (But, if you allow crossover, then the data for overall survival benefit is compromised, possibly limiting the future approval of the drug.)

--It seems clear that drugs in development right now are showing more promise that drugs that are currently approved.  If this is the case, is it ethical for a doctor to put a patient with metastatic melanoma on an approved treatment without first discussing the option of clinical trials?

If this post results in some robust responses I will work to get this input to the FDA and to the researchers and industry people involved in these trials.

Tim--MRF

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Terra's picture
Replies 1
Last reply 9/23/2010 - 4:13pm
Replies by: W.
Hi, I have a scan to send electronically to a different country for a second opinion - I sent through yousendit.com, but he is unable to open it I am wondering if I sent the wrong file.  These are the files I see on the scan when I open it up - does anyone know which one I should attach to the email to send him. 
 
3942
autorun
dicomdir
395596
command
readme
efilmlite
pacsube
dcvalid
dcsstart
 
Thank-you.

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jag's picture
Replies 2
Last reply 9/23/2010 - 9:21pm
Replies by: jag, washoegal
Insert Generic Inspirational Motto Here

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Sherron's picture
Replies 10
Last reply 9/24/2010 - 1:51pm

Hi...Just started reading about this...as Jim now has 12 enlarged lymph nodes or tumors....some days he feels good....some days bad....and he has had all these stomach issues and bloating....Just trying to figure out if he would qualify...He's 64...I am assuming he is stage IV now...with all this new stuff showing up withing a 4 week span...nothing new this week, so far.

 

Take Care,

Sherron, wife to Jim

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