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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jim Breitfeller's picture
Replies 3
Last reply 3/27/2012 - 3:51am

Boots,

HLA_A2 exclusion/inclusion  is 

The human leukocyte antigen (HLA) test, also known as HLA typing or tissue typing, identifies antigens on the white blood cells (WBCs) T-cells  that determine tissue compatibility.The  peptide-based vaccines are produced with HLA-02 petides/ antigens. So to be able to benefit from this type of therapy, your T-cells must have HLA-02 type.  are produced from

 

Jimmy B

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bikerwife's picture
Replies 1
Last reply 3/26/2012 - 9:07pm
Replies by: aldakota22

lYNN had his fourth treatment today not sure what it meant  but Dr. said something in blood was dropping and his exact words were good, good, good.  He may have to have radiation under arm on growth just not sure yet. We have scans in 2 weeks and then again in 2 to 3 months. He said it may show growth in 2 weeks but not to worry (yea right) cause that happens at times.  So i guess we wait again ready to be NED.  My husband has 26 years and 7 months needs 1 year and 5 months to retire.

What God leads u to he will. Lead you through

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Lea H's picture
Replies 1
Last reply 3/26/2012 - 8:46pm
Replies by: gabsound

Hi Everbody.

I joined this forum in the hopes of finding out what new treatments and trials were out there.  My husband, Erik was diagnosed with Stage 2 melanoma in 1998 and after a wider excision, he was given BCG injections for 3 years.  We thought we had kissed this disease goodbye but then in 2004 it reared it's ugly head again.  Erik found a swollen lymph node under his left arm and our worst fears were confirmed.  What followed was 6 months of low dose interferon followed by 6 months of decarbazine and then a further 6 months of Interferon.  He then had radiation under his arm.  We held our breath and waited and years went by and we slowly put the dreaded MM to the back of our minds.  For another 6 years Erik was NED. Then in May 2011 we decided to move our family from South Africa to Norway to give our young sons a better life. All was going well and then on the 8th of November 2011we received the devastating news that not only had the melanoma returned but that he had multiple tumours.  Erik was a courageous viking warrior and he was not going to give up without a fight.  He had too much to live for!  After 6 long agonizing weeks while we waited for BRAF results from Germany, he finally got the go ahead to start the Zelboraf trial.  On the 18 of December he started the trial and the results were nothing short of miraculous!  Within a week all the soft tissue tumours had disappeared.  Before starting treatment, Erik was unable to walk as he had a massive tumour pushing on the side of his spinal cord.  Within 2 days he was walking absolutely perfectly again and he did not get out of breath when walking 10 paces.  He read Lance Armstrong's book and was inspired to do the same.  Each day he would have a little ritual when he took his bombs (as he called them) He would talk to each one and imagine it attacking a specific tumour.   We had a wonderful Christmas and things were going well. Then at the end of January Erik had a seizure.  A MRI revealed 9 spots on the brain but as they had not scanned the brain previously, we were not sure if they had been there all along.  Erik had his first protocol CT on the 8 of February and his oncologist was thrilled with the results.  All the tumours had shrunk, some more significantly than others.  Two weeks later he was in a lot of pain again.  He had significant pain in his right thigh and groin area.  After not being able to control the pain effectively with Oxycontin and Oxynorm, we went back to the oncology ward at the hospital where they admitted him.  Further CT's and MRI's revealed that in 2 short weeks the Zelboraf had stopped working and the tumours were all back to their original size and bigger.  On top of this, Erik developed an infection that they were battling to fight.  He managed 1 day of decarbazine but his infection levels were to high to continue. Erik never gave up and when given the bad news he would just say, "okay, what next"  Sadly this courageous husband and father passed away on the 6th of March after a battle bravely fought.  It was just 2 days before his 44th birthday. I have been so inspired by reading all your stories and I would often relay them to Erik.  This is the first time that I have posted on this forum but I felt I owed it to my brave husband to share his story.  I wish all of you many years of NED!

 

Leanne

When life serves you lemons, make lemonade.

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MeNDave's picture
Replies 13
Last reply 3/26/2012 - 6:45pm
Replies by: Kimberly Duncan Watts, LynnLuc, MeNDave, Anonymous, cltml

Dave goes tomorrow for his scan results.  He has been doing the low dose Temodar since November.  We are obviously hoping that it continues to keep him stable, but his onc did say if there wasn't signifcant reduction in tumors, he wanted to switch him to the MDX-1105 (I believe it is now listed as BMS936559)  trial at Roswell.  I haven't heard much feedback on this particular trial, and after Candi's post on Mercks drug, I'm wondering if there is a clear leader in the anti-pd1 race.  Any feedback, as always, is greatly appreciated.

Best to all of you,

Maria

Don't ever, EVER, give up!

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Great article just published on another approach to melanoma.  Check it out here.

http://www.newswise.com/articles/studies-pox-vaccines-extend-survival-for-patients-with-melanoma-ovarian-cancer

 

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Lilylove414's picture
Replies 2
Last reply 3/26/2012 - 9:39am
Replies by: Lauri England, UrsulaZ

So I finished my first month of treatment about 2 weeks ago. I am so glad it's over! It was a ROUGH month! The first week was all throwing up, then I got a week off to recover. Then I was on half the original dose for a week, then 85% of the dose. The last week was the full dose but instead of throwing up I experienced the symptoms I was supposed to...ish...which was a high 101-102 fever each night. Now I'm waiting for my treatment to be shipped in vials to the doctors so they can show me how to give myself injections 3 days a week. But it's back to half the dose...which is awesome! God has been so good to me and I have a lot to be thankful for. Oh, and I lost 10 pounds that month! But now that I'm "on vacation" I'm quickly gaining it back. Gotta start eating right and exercising...bummer. ;) Well lovelies, keep fighting, keep protecting your skin and keep laughing!

God bless,
Jaimy

If God is for us, who can be against us?

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Kim41's picture
Replies 4
Last reply 3/26/2012 - 3:13am
Replies by: Kim41, gabsound, washoegal

Abnormal PET scan Feb 2/1/12. Post surgical changes seen in left groin. Questionable more slight density in left groin when current exam compared to last PET/CT. Some new areas of hypermetabolic activity seen in involving portions of the neck on the right side  and at the level of the right paratracheal region and right hilum and axilla are nonspecific. The spleen appears more hypermetabolic when compared to the last PET/CT scan. The possibility for progression of disease is considered.    My melanoma specialist said he is unimpressed by results of this PET scan. What do you fellow people think. It is March 23and I have been feeling very tired and weak in the last several weeks with pain in my right flank and in both right and left lung bases. Not sure if I should be concerned or not. I have my next scan May  23rd. Should I go to the doctor before that?. Also having pain on and off above both clavicles right and left. Mostly concerned about pain in lateral rib and back area. Has anyone else had this pain. Maybe its nothing to worry about. feeling so tired lately though. I would welcome some feedback. Thanks

         Kim

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yoopergirl's picture
Replies 9
Last reply 3/26/2012 - 2:27am

I had my eyes checked again yesterday and I still have the Uveitis and am back on the prednisone drops and dilating ones, he said that I should not have the last infusion if they suggest it at the Carbone Cancer center next appointment, I said the Oncoligist never mentioned the side effect with my eyes at our meeting so will have to mention it to him. I have read that only 1% of people get this while on the drug. I am looking for any input on this. If these drops don't help by next Weds then he may have to put some shots in my eyes, something that I just cringe at so hoping and praying that the drops do the job.  

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/25/2012 - 10:29pm
Replies by: aldakota22

Has anyone heard from her?

Insert Generic Inspirational Motto Here

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ElaineLinn's picture
Replies 4
Last reply 3/25/2012 - 9:48pm

I know I am not good at posting but my eye sight is finally coming back after the surgery and chemo treatments. I went back to James cancer center this week and my blood test showed my liver function test were not good but everything else was. So I had to go for an EKG yesterday and back next week for more CT scans on my lungs and stomach just to make sure the cancer has not spred further. I had to stop my IPPI treatments to do the trial of Muskademess [not correct spelling either sorry]  so I will be doing alot of praying that the 2 treatments has stopped the growth on my lungs and will hold it off untill I can get radiation done on my brain which will take 4 weeks.  I am also praying that it is just all the medicine they have me on and the new trial that has my liver acting up and it goes back to normal so that I can have my radiation and start my IPPI back again.  I have not had any more seizures which I am so thankful for but I also have to take medicene the rest of my life for those. But that is ok as long as I can get through these tought times and hopefull  become NED . That is my goal as I am sure it is everyone on this board. I believe that God is really looking out for me and my faimly I can not tell you how blessed I am that God has gave me such good family and friends to help me through these tought times. I also know that no matter what God will be with me through it all good or bad and that helps me get thought the rough days. 

GOD BE WITH YOU ALL!

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I have a painful node sticking out of my right flank.  I can't see the surgeon until the 4th.  The pain pills are just so so.

Any hints?  anybody else have painful lesions?

thank you

Theresa

Stage 4

Every day is a miracle.

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somnamblst's picture
Replies 1
Last reply 3/25/2012 - 9:27am
Replies by: somnamblst

I don't know what is going on with my skin graft and wound. I wasn't expecting such a long postoperative experience and I am wondering should I be worried about how I have progressed. I am 54 years old, and the doctor told me I would do fine because I am young.

On Feb. 7 I had a wide area excision of a .4m melanoma on my shin. A full thickness skin graft was taken from my arm. I was scheduled for surgery the same day as the biopsy result. I had taken 4 ibuprofen, 15 hours before, the doctor said I might bleed more. My stitches were removed at 20 days. The nurse called the doctor in before she removed my stitches, and the doctor described the entire area being a very dark color as bruising. I began daily bandage changes. All seemed OK for about a week, when I detected a yeasty odor and exudate. Went in and my doctor told me that the center of my graft had sloughed off, but the edges were holding, and that I would heal by granulation. She said it did not look infected, but prescribed gentimicin.

I am doing 2X daily vinegar and water soaks, and using gentimicin topically for 2X daily dressing changes. The yeasty odor went away fairly quickly (pseudomonas?) Though my surgical pain had subsided the granulation phase has reintroduced pain. I have been doing this for 15 days now. I don't know what to expect, and don't know how to evaluate my experience. My exudate is a light amber color and can be almost nonexistent if I do nothing but lay around with my leg elevated. The pain has lessened, but  sometimes I feel a sharper pain, and worry about worst case scenarios with wounds that won't heal. I am not even sure if granulation healing is supposed to hurt. I don't go back to the doctor until next Wednesday.

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Moodypoodle's picture
Replies 12
Last reply 3/25/2012 - 8:06am

I'm posting for the first time though I've been lurking since my diagnosis in January. I'm impressed with the discussions I find on this board. Please bear with me since I haven't acquired the vocabulary yet.  In a nutshell: I had a non-healing (painful) wound on the ball of one foot for over a year. No history of diabetes. Lots of cultures. Finally a biopsy.  It came back amelanotic malignant melanoma. Clear scans otherwise (PET/CT, bone. bloodwork, chest x-ray). Surgery--mid-foot amputation last month....i'm still struggling with recovering from that one. It took a while to learn I was staged IIC because something was a 5 and something else a 4; even though the offending half of the foot is GONE!  The oncologist called me yesterday to say it was time to discuss treatment options and that the standard for my case would be interferon. We have an appointment (the earliest we could manage) for Apr 6 for an in depth discussion. Then just this morning I received an overnight UPS box of 4 vials of Sylatron (weeks 1 and 2).  AGGHHHH  I thought we were going to have a discussion and I planned to keep an open mind. Apparently she thinks this is a done deal. What I read online leads me to believe quality of life suffers greatly on this stuff for the better part of a year with questionable results. Everything in me is screaming no, no, no.  At my age, 71, quality of life is an issue!  Maybe I'm just scared or maybe I just need reassurance that I do indeed have a decision to make regarding this treatment.  Thanks for listening (!).  

Ann

Every Second Counts!

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chermes55's picture
Replies 3
Last reply 3/24/2012 - 9:41am
Replies by: aldakota22, awg, WendyPam

Had my 8 wk brain mri and ct scan on tuesday and saw dr weber on wednesday. He told me that i had a huge reduction in the size of the 2 lesions on my liver. one went from 2.1 x1.5 cm to 0.8x0.6 cm. the other went from 2.3x1.4 cm to 1.4x1.2 cm. and many other hypodense lesions from the prior scan were barely perceptible on this one.  i was so releived to hear this news it was a great 30th birthday gift to get such great results i had been stressing about it all month. he said that they have been spoiled on this trial because of the high success rate in all patients. as far as side effects go i am a bit itchy and have had some minor rashes. on week 5 i had about 4 or 5 days of high fevers and chills which i was somewhat expecting from other peoples exp. yet was still a little scary. Dr weber said that it was normal and to expect them to come and go from time to time. after interferon this is nothing i had fevers everyday. i have returned to work about a month ago and even put in a few overtime weeks. i feel like myself again which is amazing. my energy level is good but after a long day at work a nap is still in order. this week was my 1 yr diagnosis anniv. and looked back on all i have been thru many lows and not so many highs but this week was definitely a high for me. my life has changed so much since my initial dx. it seems in the last few weeks that it is kinda getting back on track. i get another ct in a month so i will try to keep u guys posted.

 

stay strong we're gonna whip this thing 

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deardad's picture
Replies 10
Last reply 3/24/2012 - 7:26am

To the international community on here you may not know Jim Stynes and he wasn't as far as I know I member on this board.

He fought this disease (stage 4) for nearly 3 years using his high profile as a Australian rules footballer to educate others. He passed away this morning, he was 45yrs old.

From what I understand he had numerous brain surgeries and in the end was on a antiPD1 trial here in Melbourne which was very new at the time - Nov 2011.

Another brave warrior lost.

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