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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NYKaren's picture
Replies 9
Last reply 8/9/2012 - 11:53am

On the positive side, my adrenals seem to be functioning, so I'm off hydrocort.  Just to make sure, I'm going for a stimulation test beginning of Sept., sooner if I don't feel well.  Also, after second infusion of Remicade, my colitis completely disappeared.  As I've said, it's like a miricle drug.

On the other hand, none of my treatments  have stopped the progression.  Radiation results were temporary--side effects are permanent. (bald spot, lack of saliva, can't open mouth wide, etc)  i wouldn't even give them a second thought if it had helped, but, as soon as the radiation was stopped, the mets were on the march again.

Yervoy #1 I got through with minimal side effects--was kept on Budesonide for diarhhea and dealt with fairly severe rash but alas, didn't stop the mel.

Got through every single bag of IL-2 like a champ, was doing so well after second round, I went back for a third.  Guess what--no lasting remission.

Yervoy #2 caused colitis and colitis treatment caused adrenal insufficiency.  Yervoy was March/April, finally back on my feet.

Continual freezing of mets/applying Aldera is of minimal help, some mets do disappear, but others keep spreading.  The met in my ear is getting closer to the drum.  Seeing surgeon at Sloan who has ear experience on 8/28.  (oh the joys of trying to get doctor appt's in August--two docs tried getting me in sooner!)

I have not been eligible for PD-1 trials when there were seats...usually no measurable disease on NON-IRRADIATED skin.  NOW, I'm on my fourth treatment, so that disqualifies me from Merck, and Remicade disqualified me from BMS.

My fourth and latest treatment is Temodar.  If Temodar does nothing, Dr. Wolchok will ramp up to combo chemo.  He told me that there will be other drug companies developing Anti PD-1 drugs, and his hope is to keep me stable until another trial becomes available.  Of course I am BRAF and C-Kit negative.  I am feeling small nodule on my collar bone, will ask surgeon to do a needle-biopsy. 

Dr. W. was thinking down the road about TIL, so he tested my blood, and of course, I don't have the right (something or other) that NIH would want, so another dead end.

I do think that all these treatments might have slowed things down, the glass cannot be half empty, but must remain half-full.

That's my update.  Take care everyone; you're all in my thoughts.


Don't Stop Believing

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Laurie from maine's picture
Replies 12
Last reply 8/9/2012 - 6:45pm
Replies by: Gene_S, Anonymous, TSchulz, Laurie from maine, NYKaren, Phil S


I am in a limbo phase at moment while I wait for a zapped brain met to "calm down".  I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested. 

His suggestions are IL-2 or TIL. (I am leanings towards IL but I was told if scans show brain involvement on next scans IL will not be an option as it doesnt cross brain barrier)   Doctor  and I will continue to look at PD-1 trials but he is pesssimistic that I would get a seat as there are few trial and brain involvement moves you down the list he thought, but I still will look/hope and apply.  BUT meanwhile have to have another game plan as back up.

I was told it would be very hard to push for a reinduction of IPPI for me as i was a mixed responder with partial growth or some shrinkage in most tumors but real growth in my shoulder tumor.  I was a partial responder (story of my life with melanoma it seems) with BRAF and grew 3 very agressive tumors in my intestines so BRAF scares me as a choice to go back to.  I am going to research BRAF MEK combo but I believe my doctor does not think I qualify for that one? not sure why.

I have just found a new small tumor on my other shoulder and this one is painful - that is new for me most of mine are not painful, it makes me scared that cancer is starting to ramp up on me.  

I would appreciate any thoughts or input from people as I sit in limbo I can do research and come in armed with my own thoughts on plan after I hear my scans results.  I am currently getting radiation on my shoulder to cut it down a little as it is a very large tumor.


you are all in my thoughts and prayers-thank you

laurie from maine

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Dgentz's picture
Replies 3
Last reply 8/9/2012 - 4:39pm

Not sure when I last updated, but my IL-2 was not very successful, so on 7/9/12 I started Zelboraf. Dr. Started me on 4 pills a day, increased to 6. Now moving slowly toward the full 8 (adding 4th at night for 5 days then to morning dose). Got BAD sunburn - apparently shade is not safe enough! ;)

Joint pain has been my worst side effect though. Has anyone tried any supplements like Osteo Biflex (glucosamine)?? Advil doesn't seem to be doing much lately.

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Anonymous's picture
Replies 2
Last reply 8/7/2012 - 5:34am
Replies by: aldakota22, sharmon

For those familiar with Peter Ogle's blog ) this is the most recent entry regarding Peter. For those so inclined, the family is asking for prayers for Peter...
Sunday, August 5, 2012

Family Update
Guest writer: Nick Ogle

Despite an encouraging PET/CT report from Tuesday's trip to OHSU, a CT scan taken at Good Sam on Saturday showed a large tumor on the right side of Peter's brain located in his parietal and temporal lobes. Because of its size and the swelling caused by it, Peter is undergoing surgery to remove it today in Providence Portland Medical Center. Because melanoma brain tumors bleed, there is a lot of blood clotting in the area surrounding the tumor, which will also be removed.

We are thankful that the tumor is on the right side of the brain, Peter's nondominant side. This means his speech and memory should remain unaffected by the surgery.

We expect Peter to be in the ICU for the next couple days as he recuperates and is monitored closely.

Hold him in your prayers. 

Luke 1:37

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Vermont_Donna's picture
Replies 10
Last reply 8/10/2012 - 11:18am

Hi everyone,

  I havent posted in a while...have been busy working and enjoying life. I am now 18 months NED!! In July 2012 I had my quarterly oncology checkup, PET/CT scan, and today had a followup ultrasound of a specific "hot" spot on my leg that didnt show anything to biopsy. So this is the longest I have been NED since i was diagnosed with stage 3a melanoma cancer in Septermber 2006. For those who arent familiar with my history, you can peruse my profile but I have had many treatments to my leg (where the melanoma has been) including interferon, leukine, radiation twice, isolated limb perfusion and ipilimumab (Yervoy). Yervoy was my last treatment that I did, and I had four doses, 3mg/kg. I had relatively few side effects. I have moderate lymphadema and neuropathy in my right leg and wear a compression stocking and do maunual lymph drainage daily.

 I just wanted to share my good news and wish everyone well and the success (NED) that I have finally achieved. Jimmy B says if I stay NED three years then maybe I can say "cured"?? Jimmy...I am halfway there!!!!!!

Hugs to all,

Vermont_Donna, stage 3a


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Gene_S's picture
Replies 2
Last reply 8/9/2012 - 7:17pm
Replies by: Gene_S, ToddC

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 2
Last reply 8/6/2012 - 11:51pm
Replies by: Gene_S, LynnLuc

Quercetin, a polyphenol found in apples, onions, green tea and other plant-based foods, is a quinone that has shown an interesting effect on melanoma tumors.

In low concentrations quercetin behaves as an antioxidant, yet at high concentrations it becomes a cell-damaging pro-oxidant.



More info can be done by searching " Quercetin and Melanoma".

also "Science codex and Treating melanoma and brain cancer without chemotherapy".

also see:

Best wishes,


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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mama1960's picture
Replies 8
Last reply 8/16/2012 - 4:51pm
Replies by: mama1960, TSchulz, Anonymous, sharmon, aldakota22

Hi everyone.

This forum was a life saver for me when I started this journey. I was diagnosed in August 2008. Had tumor removed from sole of right foot. Did the year of Interferon. Scans have been clear.....until now. Had a yearly scan a couple of weeks ago, and it came back abnormal. Two spots lit up, one in a lymph node in my right groin and one in my colon. Sent the scan over last week to a radiologist to see if he thinks we can do a needle biopsy, or if it will have to be surgery. No word yet. Apparently he was out of town for week and might look at it today. Of course everyone is telling me it might be nothing but and infection or something, but in my mind I think it will be the big M. Will posting here, and look forward to the wonderful support that has always been here.

It is what it is.

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Kelly7's picture
Replies 5
Last reply 8/7/2012 - 11:11am

My brother(37) has stage 4 melanoma on his lungs. In February he underwent IL2 with little positive results so the doctor had him undergo Yervoy starting in April. His only side effect during the treatment was that he lost some hair and his hair turned gray. He finished his treatment in June and went back in July for his 6 week scan. At that time, the big tumor shrunk, and the smaller tumor was GONE!!!!! 

Fast forward to 2 weeks ago, he started to get really bad headaches, and was super tired. Went in for more scans and tests and it was determined that his pituitary gland was swollen causing the severe headaches. He was sent to the hospital for 2 days and is now on steroids.  Now this week he has developed severe stomachaches. He went to the ER last night, and they did many tests. THey think its gastrointestinal. 

Has anyone else had this? I keep reading the side effects on the Yervoy website and they say that the side effects can be life-threatening.....I am soooo worried!


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Mymlan's picture
Replies 8
Last reply 8/8/2012 - 10:36am
Replies by: Mymlan, Anonymous, Janner, Gene_S

Hi all, 

I had a wide re-excision for a thin melanoma of the Left posterior ear 3 weeks ago. It was grafted and is healing well. The melanoma was removed by a Dermatologist on June 6th. Pathology report states Clarks Level II, Breslow .25 mm, no ulceration, extensive regression, mitotic figures not applicable (small dermal component), epitheliod cytology, no identified melonacytic nevus, non-brisk tumor-infiltrating lymphocytes, no perineural/vascular invasion identified. 

Also, found a strange-looking mole in my scalp on the Right side of my head, did a 2 MM Punch Biopsy, which came back Friday as precancerous, according to the Oncologist. Now I am being sent to the MD Anderson Melanoma Center where they want to do a full body scan to check all of my moles. 

About 2 weeks ago, I noticed several small, new pigmented areas on the backside of my left ear, they are all in a row up and down my ear. Two are pretty big and kindof a rectangular shape. They are getting darker as time goes by. They don't feel "bumpy" but they do have a slight rough surface. What are the chances of this being more Melanoma..?

I noticed a few more similar spots under my left armpit last night. One big and two small, they are very faint but they are there. Has anyone else had a similar experience..?


"The journey of a thousand miles must begin with a single step" - Lao Tzu

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deardad's picture
Replies 5
Last reply 8/6/2012 - 6:14pm

Does anyone think that 8mg of Dexametheisone is too low for someone with brain mets with paralysis?

Do you think we can increase this dose? Does anyone know what are the negatives of doing so are?

The onc said it might help, but didn't recommend it? I don't get that....and in the heat of the conversation we came out not knowing whether it was an option or not...he just didn't recommend it.

We realise dad has only a short time but is there anything that can help or has helped your loved one with brain mets before they passed?

Dad's appetite was great a week ago now its a battle for him to eat.....I think that's more about loosing his sense of taste.

We are caring for him at home, he is still lucid and his old self personality wise but as I posted earlier on he is now in a wheelchair, experiencing mild blurred vision and dizziness. He slips in and out of nodding off, but when stimulated can concentrate and engage in conversation for over an hour.

What a horrid, vicious cancer......

Nahmi from Melbourne

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Vernon123's picture
Replies 1
Last reply 8/5/2012 - 2:46pm
Replies by: DonW

Hi. My daughter (14 years old) was diagnosed with superfiscial melanoma.
Breslow 1.3
No ulceration
Clear margins
Clark level 4
Mitosis 4
No satelites

I tink I understand that the next crucial ting know is to determine if it has spread to the lymph nodes right? How likely is that to happen considering depths and the clear margins? Is that the worst case scenario? If so then what is next? Chemoterapi? Hard to even think such a thought.

Would be glad to hear if some of you could light me up a bit on this field.

Regards Jan

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Gene_S's picture
Replies 1
Last reply 8/5/2012 - 11:33am
Replies by: Linny

Anyone know how Yoopergirl is doing?  I believe her last post was in July.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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dawn.spiering's picture
Replies 3
Last reply 8/5/2012 - 6:37am
Replies by: natasha, o2bcheri, Swanee

Hi my name is Dawn. I have just been diagnosed with melanoma . In 2007 I had surgery for uterine leiomyosarcoma and there was no adjuvent treatment. In 2008 I noticed a small lump in my neck and applied for insurance coverage and denied because of previous diagnoses, for the next three years I've been fighting for state insurance coverage and after quitting my job and allowing me and my disabled son to become homeless. I finally recieved medi-cal. The lump is now huge about 5 by 5 by 4 cm and is pressing on the caratoid artery, which means alot of pain. I am waiting on insurance approval for surgery which is scary sense Molina is fighting on paying any test the doctors need to help me. I think they are hoping I croak before approving surgery :(. So thats my history.

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Rocco's picture
Replies 8
Last reply 8/10/2012 - 11:17am

July CT and MRI were both clean as they've been since 2009.   I pressed my Onc to clear with the trial company (MDX-010) that I could move from quarterly scans to a 6 month scan frequency.  Great feeling as I now have no planned medical appointments until after the New Year.

Hang in there everyone!  Prayers and good vibes sent to all in this fight..

- Rocco

Stage IV since August 2005, IpI responder - last dose in Feb 2009

Luke 1:37

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