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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EricNJill's picture
Replies 8
Last reply 11/27/2010 - 9:12pm

Well we got the determination from Social Security Disability and they would not back date Eric's onset of disability because he made more then $1,000/month for the first 10 months.  So our 5 month waiting period will begin November 1st.  I have $3,000 in savings and I make around $800/month myself because I'm hourly and I'm taking off work to take him to appointments and to care for him.  His insurance is going to cost us $600/month and my house payment is $1,100/month so as you can see I'm going to be in trouble fast!

We had a friend offer to do a fundraiser for us.  I thought about setting up an account at a bank.  Does anyone have experience with this?  Do I have to start a charity?  I can't really start a non-profit charity because it's for profit right?  I'm confused about this and have no experience so I'm looking for help.  It's also been suggested that I put a "donate" button on Eric's Facebook Page so I'm looking into that, but first I want to make sure I set up everything correctly.  I would have to claim everything on my taxes as income right?

Also Eric said that he wants to set up a fund for us in the event of him passing.  He is so worried about us because he has no life insurance.  How do we go about doing that?

Sorry for so many questions, thank you for any advice.

JillNEric In OH

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EmilyandMike's picture
Replies 6
Last reply 11/27/2010 - 12:28pm

I just saw this article on my Google alert.  Looks like they are getting closer to figuring out why people build resistance to BRAF inhibitors.

http://www.forexpros.com/news/general-news/studies-show-how-skin-cancer-evades-promising-drug-176820

Also - I have been reading a wonderful new book on the history of cancer called "The Emperor of All Maladies".  Written by an oncologist, it reads like a detective novel and has really opened my eyes.  It is not a book that talks about melanoma, but I still highly recommend it because it is very relevant to any cancer. Read the reviews for a good overview of the book:  http://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439107955

All my best to you

Emily - wife of Mike, Stage 3a

www.emandmichael.com

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I had a CT scan after almost 3 years of clean scans and there is a spot on my liver.  I had a PET scan done last week  and waiting for the results...and very worried.  Any one had liver surgery?

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churchwelldana's picture
Replies 4
Last reply 11/26/2010 - 9:52am

I'm currently stage 3a, about to have surgery to remove lymph nodes. After that I will start Interferon. I live in Memphis and there are no clinical trials available here. There is one available at Vanderbilt in Nashville (4 hour drive). It involves using ipilimumab, but it is a double blind study. I'm just wondering if that would even be worth my time. I know most all of this is a wait and see kind of thing, but I'm only 32 and would like to do whatever I can to reduce my chances of it coming back. The good thing is that my PET/CT scans were clear and that I only had one sentinel node with a micrometastases.

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MaryMary73's picture
Replies 1
Last reply 11/25/2010 - 9:01pm
Replies by: MaryMary73

28 days after being diagnosed with a Breslow depth of 0.39mm and 26 days after surgery and 11 days after learning that my margins are clear, I will be returning to work on Nov 29th. I am excited and yet extremely nervous at the same time. Life, as I knew it, will never be the same again.

Tomorrow, I have an appointment with my family doctor who has complete reports from the dermatopathologist and the plastic surgeon. I will finally be able to get a good look at what was written and he will also help if there is something I don't understand.

I want to thank all of you who prayed with me and for me. For your cheers and kind words. My heart is with each and every one of you yesterday, today and always.

Maria

P.S. You can find me on my personal Facebook profile at http://www.facebook.com/MariaAerikos

The only real wisdom is knowing you know nothing -Socrates

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Dynasysman's picture
Replies 3
Last reply 11/25/2010 - 7:20pm
Replies by: Brandi, Dynasysman, Pekoe

I am MUP, originally classified N1b M0, awaiting left posterior neck dissection.  In preparation for surgery, we conducted a PET-CT scan (clear) and a brain MRI (see below).  Surgery is scheduled for December 7.

When my surgeon left a message saying he needed to discuss my MRI with me, I immediately started thinking, "brain mets, oh my G-d."  When we spoke, though, he said that the MRI had revealed an aneurysm at my M1 terminus.

I have been having a funny feeling for month -- less balance, losing words, etc. -- but never thought of an aneurysm.  However, symptoms have been getting worse...it could have blown at any time.  And the impact of a ruptured aneurysm really stink -- 10-15% death on the way to the hospital, up to 50% at 30 days.  Most survivors lose a bunch of brain function.

So now we will (hopefully) patch the aneurysm while doing the neck dissection.  I still don't know that my status will not get worse during surgery (the same MRI a second possible positive lymph node in another part of the left posterior triangle.)  But whatever comes, I will probably live longer and better because we found the aneurysm now.

You never know when life gives you blessings, and some come in the most bizarre ways...

Happy Thanksgiving, all.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Melanoma Mom's picture
Replies 2
Last reply 11/25/2010 - 1:11pm
Replies by: Becky, Linda/Kentucky

Today we celebrate one week of NED for our 14 year old son. 

Wishing you all a beautiful day full of love, merriment and pie!

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dian in spokane's picture
Replies 4
Last reply 11/25/2010 - 12:08pm

Hey Kevin,

If you are reading..we'd love an update. I am sure I am not the only one wondering how things are going with you.

 

dian

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Rebecca and Bob's picture
Replies 2
Last reply 11/25/2010 - 9:00am
Replies by: lhaley, King

My husband went through so many tests the past two days. Endoscopy, colonoscopy and additional CTSCAN. This was for his abdominal cramping, stomach pains and gas. Everything came back clear. The only test left that they can do is the camera in a capsule to further look at his small intestine. They could not do that one unless they did the other test first. Something about insurance no covering it and that this is the normal process for investigating stomach issues.   Although after all these test the doctor did say it appeared he had Irritable bowel syndrome and reflux, probably from stress. He did put him on Prilosec and he seems to feel better, so that's good news at least he feels better and relieved. We may still pursue the capsule test, but another thing the doctor said was if my husband had another intussception or any blockage that he would have never been able to drink all the fluid for the colonoscopy that he would have thrown up.

i think we both feel better after all these tests, it's scary when you have stomach problems and you have had mets to your small intestine before. We will probably still do the capsule camera test because at this point what's one more test going to hurt.

Anyway, I hope everyone has a great Thanksgiving and enjoys the day.

Believe

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Sherron's picture
Replies 16
Last reply 11/24/2010 - 9:20pm

It has been a roller coaster lately.  Jim as some of you know has been in and out of VA ER for several weeks.  They did emergency surgery on Friday around noon.(he had only about 36 hrs left)  No time even for scans...they could see the hole.  They did a resection.  They were hoping to do further work but he was very unstable during the surgery,  His stomach was filled with blood and bile.  There are still 12 to 13 tumors which will most likely do the same thing.  They were hoping to remove more and give him a bag....but at this point that does not look likely;  His stomach is open with gauze over it.  It has to heal from the inside out...He will be here for 7 to 20 days...then they will send Home Health Care out to chnage and clean the area.  The doctor will set him up on some good medications for pain and break thru pain.  And we will try to give him the best QUALITY AND PAIN FREE TIME LEFT FOR HIM.  Jim had 4 years 2 months of great quality time, which is what he wanted, ..I don't think the doctor has told him about the other tumors, nor have I since he has been in ICU....but I think he probably know there are more.  We pray and ask for your prayers for a pain free holiday season, seeing many family members, making some few final joyous memories...

I will keep everyone one informed on things as it happens.  Thank you for being here for me.

Take Care,

Sherron, wife to Jim

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FertilityDoc's picture
Replies 13
Last reply 11/24/2010 - 8:57pm

I was diagnosed with Stage IIIb Melanoma in 04/09.  Made it through the year of Interferon ending in 07/10.  Had a negative PET scan in June.  Was scheduled for a repeat CT scan on December 6th.  I had really put the Melanoma behind me.  As we all know, you continue to live with the fear.  Over the past week I have had vague right upper quadrant discomfort about 1 inch below the rib cage.   Not bad.  Just a vague sensation which seems to worsen after eating.   Could be gall bladder disease or gastritis (had H. Pylorie in the past).  Can't get fear out of my mind.  Based on my fears and for the sake of being careful I moved up my CT scan to this coming Wednesday.  I am just curious.  For those who have had liver mets, did you have any early symptoms?   Could you sense something wrong early?  Any vague bloated feeling or discomfort?

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Sharyn's picture
Replies 4
Last reply 11/24/2010 - 6:40pm

Hello everyone,

I'm sure you all remember Janet from the UK who recently underwent WBR to treat a single brain met. I believe she also had it in her stomach. Well, I received a personal email from her friend Cynthia, saying that Janet had been admitted in a hospice facility. Tonight I received this second email from Cynthia:

Hello Sharyn
It is with sadness that I have to tell you that Janet died today peacefully in the hospice with her family beside her.
She was a very brave lady who loved life and fought the cancer to the end, sadly the last treatment did not have the desired outcome for her.
I hope you continue to make good progress and so glad it worked for you.
I think Janet felt if she tried some thing rather than letting things happen then she was in control.
Best wishes
Cynthia  

I just thought you would all want to know.

Hugs

Sharyn, Stage IV
 

 

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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dherndon's picture
Replies 2
Last reply 11/24/2010 - 1:22pm
Replies by: vickirs, Anonymous

Any have any thought with thesewo treatments

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lalbers's picture
Replies 6
Last reply 11/24/2010 - 12:13am
Replies by: Cynthia C, lalbers, JuleFL, jag, Fen

I'm new here to this forum, and hopefully can have someone to lean on.  Dad had skin melanoma 5 years ago- had surgery, clean margins, sentinal lymph node biopsies- everything clean.  Pet/MRI/ oncologist every year.  A few months ago, dad developed respiratory problems, diagnosed with seasonal allergies.  Wrong.  Chest x-ray showed several large tumors by his heart and lungs.  Biopsy confirmed.  It's back.  He lives several states away.  They want to sell their house and move closer to me and hubs, but with the market the way it is, they can't sell, and can't move down here till it sells.  I'm a nurse, and know his prognosis, even though he tries to shield me and my brother from it- ie, they won't get copies of diagnostics, and read them to us, even though I know they have them- they say they don't.  They've already sold off some valuables they had so that mom can have enough money to move- but money really isn't an issue- she can live with us.  The thing that's killing me, is that as a nurse, I'm flexible in working, I've already told my work I may have to leave, and that's ok- I can get a travel position up there, and spend time with them- a few months, a few weeks....... Dad refuses to let me and my brother come up.  He says he wants to die there with mom, and we can come up after he's dead.  We've never been really close, although they did spend a summer, and several vacations with us in the last few years- and I talk to mom almost every day.  He's only opting for Temozolomide, even though he is eligible for severala clinical trials- but mom would have to drive him to them, and she can't drive that much.  I offered to come up there and drive them, and was turned down.  I hate this feeling so helpless.......

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naty's picture
Replies 3
Last reply 11/23/2010 - 10:07pm
Replies by: naty, Jackie W

I'm just wondering how do you fight insurance to get to major cancer centers such as MD Anderson?  We live in michigan, my father has medicare thru an insurance company here.  And FINALLY after 3 weeks of daily calls to the insurance, his oncologist, and MDA we have a signed contract JUST for a 1 day consult.  Is this typical to have to fight so HARD against the insurance companies?  I was told originally by MDA that we would be there for 3-5 days for a consult, but now we will be there for a day.

Sorry I'm trying to learn the ropes and we are new to this "game".  Any information and tips would be helpful!!   dad has stage IV (brain, liver, lung) and just finished brain radiation last monday.  

So I guess my questions are 

1.  How to deal with insurance (or is it medicare that is a problem?) or is there an insurance that you may have that was ok with MDA

 

2.  While at MDA for the consult will they discuss all his possible options in regards to clinical trials he qualifies for or do we need to know what he may qualify for (via clinicaltrials.gov) ?

3.   I may be adding more! thanks

Melissa 

 

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