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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dolphin5's picture
Replies 4
Last reply 1/30/2013 - 7:02pm
Replies by: kylez, Linny, POW, Janner

My wife was found to have four tumors all positive for melanoma.  Three have been removed with clear margins.  One in the breast, lung and buttocks.  One was left in her neck with the theory of wait and watch, which she does not like.  The primary was never found.  All have the marker of HMB45, S100 and Melan-A.  This is our question.  What do these markers mean and do they determine future treatment.  Finally does it sound reasonable to wait and watch.  

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POW's picture
Replies 5
Last reply 2/7/2013 - 9:30am
Replies by: POW, Tina D, NYKaren, washoegal, Anonymous

 

The people on this forum are pretty open about most emotions. We talk about our fear, anxiety, frustration, elation, and stress. But I never hear anybody talk about depression. I, personally, didn't talk about it because with so much to do and so much to think about, I wasn't depressed. Or so I thought!

I just posted about depression on the Off-Topic forum. I suspect that we all-- patients and caregivers-- would be wise to recognize and deal with that emotion. It's effects can be very corrosive.

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/30/2013 - 12:51pm
Replies by: Janner

between melanoma in-situ and invasive radial growth phase melanoma?  what's the difference prognostically?  risk-wise?  what would an insurance company look at in terms of difference? 

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sharmon's picture
Replies 5
Last reply 1/30/2013 - 6:30pm
Replies by: sharmon, Owl, Anonymous, awillett1991, melissa ann

I will need to have all the the available now.  the trial is not working and he is in terrible pain in the hospital now.  he was to be scanned on the 6 of feb but they are moving it up to tomorrow .  then they are talking about radiation .  I will be asking questions and trying to find a way to  get more treatment.  he doesn't want to quit.  all of his pain can be treated with a inserted pain pumb under the skin and that is scheduled.  he was on the merck mek trial and did not fail the trial but moved to this trial when it became available.  Jimmy B I need your input as well as others.  I still have mek on hand.  he is braf negative and was tested twice but not by the new test.  this was years ago.  HELP.  Ask me questions, give me hope. 

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AllyNTAus's picture
Replies 6
Last reply 2/15/2013 - 7:41am

Hi everyone,

I've been going pretty well on the GSK BRAF inhibitor since I started on it 1 May 2012, all existing enlarged lymph nodes shrunk dramatically and stayed that way, lungs cleared up, no new things cropping up until now. My CT in Nov 12 showed a 7mm focal lesion in the fundus of the gallbladder. By my next CT on 9 Jan 13, it had increased to 15mm. I had an ultrasound today, and while I don't have the report, it is quite obvious to me from looking at the film that the lesion is now quite large, and looks a bit like a tree with several branches coming off it.

I have no symptoms at all, feel otherwise very well, and my melanoma oncologist has remained happy with my response to the BRAF inhibitor.

I have an appointment to see my local oncologist in the morning, but I am expecting bad news. I have read some articles that indicate metastisis to the gallbladder is fairly common, and if contained there, can respond reasonably well to surgical resection. I am happy to get rid of my gallbladder if necessary!

So I was just wondering whether anyone else had experience with a met to the gallbladder.

Hoping all of you are keeping well,

Allison

A bad day's fishing beats a good day's work everytime

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Replies by: Anonymous

We have done radiation on the tumor on his back, radio-surgery to the tumor in his brain, been waiting to hear back for 2 weeks on the B-raf mutation and possible going to do IL 2 in a week. Anyone been on this road and have any advice??? So far the side effects are, sore esphogus and difficult swallowing and burping and since there are liver spots, really uncomfortable around the liver. He also can't eat a lot at one time, since this makes the liver uncomfortable feeling worse. Advice or personal stories of what has worked and what has not worked would be most helpful. Thanks.

one day at a time...

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/30/2013 - 1:08pm
Replies by: Anonymous, Janner

I thought melanoma on the skin that regresses would be a good thing.  It would be going away.

But then someone posted that if a place on skin regressed, it might end up later that a tumor showed up with an unknown primary.  That didn't sound so good.  You might lose a signpost that something was wrong.

What to make of this?  Puzzling.

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Anonymous's picture
Replies 20
Last reply 4/23/2013 - 11:43am
Replies by: dani66, NYKaren, Thandster, Carole K, kylez, Anonymous, POW, Janner, jag, JakeinNY

I had Melanoma Stage 0 in 2012 so am now at higher risk for melanoma I am told. I also have breast cancer stage 1 and there is a strong link between the two so i want to be monitored by a good doctor in the NYC area so i can hopefully catch any other melanomas at stage 0.

I am not sure which hospitals are best at monitoring for melanoma high risk patients in the NYC area. I tried getting in to sloan to see a top doc there for monitoring but apparently i do not qualify becuase i only have stage 0. i don't quite understand this because i would think it is important to catch it early, but i don't seem to be able to find doctors who specialize in melanoma who are willing to monitor stage 0 patients. The dermatologist i am seeing does not seem to be the best and does not really specialize in melanoma. In fact, he indicated that the melanoma stage 0 was nothing on several exams until i requested that it be removed and tested.

So far, i have an appointment at molesafe at NYU which i heard is the only one in the nation, but i was wondering if anyone can recommend a doctor/hospital that is considered good for melanoma monitoring high risk patients. Thank you. 

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POW's picture
Replies 8
Last reply 1/29/2013 - 11:43pm

There is something I thought I should mention-- it may be something and it may be nothing.

My brother (Stage IV with multiple mets including the brain) was taken off Zelboraf in early December because his tumors were becoming resistant to the treatment. By early January, his tumors were coming back fast and he had 4 new, small brain tumors. His medical team was very ambivalent about giving him ipi because he was already very debilitated (could he tolerate the side effects?) and because ipi takes months to work (would he survive long enough?). Eventually they decided to go ahead with the treatment because my brother really, really wanted them to try. He had one infusion and 3 days later developed severe neurological symptoms and was rushed to the ER. The oncology team decided that that's the end of ipi for him. 

The thing that surprised me is that his oncologist (a melanoma specialist) was wondering if the ipi caused the rapid onset of the neurological symptoms. Frankly, that never occurred to me because 1) I knew my brother's tumors were growing so the onset of symptoms didn't surprise me, and 2) I know it takes ipi a long time to work-- why would he have problems so soon? However, it is true that in many cases, when ipi does work it appears to make the melanoma tumors larger, at least initially. The activated T-cells can surround the tumor and start attacking it so the tumors APPEAR to be growing at first, but they aren't. I think the oncologist was wondering if such a thing happened to my brother's brain mets. 

As I say, my brother's reaction probably has nothing to do with ipi-- it's just the normal disease progression that coincientally happened 3 days after ipi. But since ipi is a new treatment and doctors are still learning new things about it all the time, I thought I would mention it. 

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buckytom's picture
Replies 8
Last reply 1/30/2013 - 12:43am
Replies by: JerryfromFauq, buckytom, Anonymous, Wolverine, Phil S, Janner

Recently diagnosed with melanoma, found in lymph node in right neck. After PET Scan and visit to dermatologist no primary found. Had neck dissection on 1/21/13 - one additional lymph was found with melanoma - all positive...right? Refferred to radation oncologist (after dealing with my surgical oncologist and consultation with medical oncologist) and he says the primary may be in my eyes or in my throat (mucosal). I have absolutely no symptoms in those areas.

So - does anyone have any experience with this type of a diagnosis? After the surgery it was sounding like it was limited in its spread and now this. I am very confused - any input or experiences would be greatly appreciated.

Thanks!

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Greg.R's picture
Replies 9
Last reply 1/31/2013 - 10:27pm

Hello ,

I am a Stage 4 pallative melanoma patient , I was intially diagnosed with the disease back in 2006.

My host site is behind my left knee which required extraction surgery.

I subsequently relapsed in 2007 ( left groin ) , 2009 ( right temple ) & 2010 ( right temple again ) these relapses all required extraction surgeries.

In August 2012 I discovered a new growth in my abdomen , after Ultrasound & CT scans I was informed that this was indeed a relapse.

Further investigation led to the dignosis that the metastasis had spread to the heart , lungs , back , brain and chestinal lymph nodes.

I was informed in September that my life expectancy is less than 12 months.I had extraction surgery on the abdomen in November.

Test results showed that I was positive for the BRAF mutation.

I began the BRAF clinical trial on January the 14th.

Since I began the BRAF  I have been enduring extreme symptoms that my oncologist does not feel are being caused by this treatment.

Symptoms have been as follows :
- Internal chest and back pain.
- Pressure from the brain feeling like it is pressing against my skull.
- Blackouts. Without warning ranging from 15 - 90 minutes.

- Uncontrollable vomiting.
- Hand Shaking / Tremors
- Nausea and Dizziness.
- Constipation.
- Fatigue.

The pain level have consistently been in the 7-8 pain scale range , decreasing to 4 - 6 though never disappearing completely. Pain is present 24/7. I have recently had my med's reassessed and have been been prescribed : Morphine 4 times per day ( 3 oral & 1 injection ) , Fentanyl 50gm slow release patch ; Metoclopramide 1 x 3 per day ; Maxolon injection 1 per day ; Dexmethsone 4 per day , plus 2 other medications to assist with the constipation.The constipation has increased dramatically in the last 5 days to the point where I am getting no relief from the medications that are supposed to assist  with this.

As you can well imagine I am at a loss as to what to do. This new drug program has been of some assistance , yet , the continual pain drowsiness   fatigue and now the high level of constipation related to taking so many medications is proving to be an enormous barrier in attempting to lead a "normal" life.

Before beginning the BRAF I had researched and found that the most participants only experienced sore joints , fatigue , skin irratations , rashes etc

i.e. none of the type of reactions I am getting.

Can anyone assist with any advice as to which direction I should take from here or any alternative therapies that may be of assistance ?

Thank you for taking the time to read my post and I look forward to your feedback.

Greg

FIGHT LIKE HELL !!

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Amanda's picture
Replies 6
Last reply 1/30/2013 - 3:33pm
Replies by: Owl, Amanda, Phil S, Tina D, POW

The subject says it all.  We are very thankful for this opportunity, and are praying it shrinks his tumors.  I will keep everyone updated on his response, as well as any side effects.  Wish us luck.  

"Give thanks in all circumstances"

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Kelly7's picture
Replies 5
Last reply 2/4/2013 - 6:51pm

Hi,

I was wondering if I could get your opinion on my brothers situation-

To sum up:

3 tumors on Lung, stage 4(original site was on back 4, 7, and 9 years ago)

IL2 (2 weeks in the hosptial, 20 bags total) February 2012

Yervoy (4 injections over 2.5 months, serious colitis in August-September) April-June 2012

Last update December 2012, still have one tumor, however it has shrunk a lot. Clear PET and CT scan on other locations.

Doctor suggested 3 options:

1. Wait and see

2. Surgery to remove the one tumor

3. Radiation

 

Wouldn't a combination of surgery and radiation be best?

 

THank you SOOOOOOO much for any advice you can give!

 

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Allen C's picture
Replies 10
Last reply 1/31/2013 - 3:46pm

Hello to all the old timers. Allen Carr from here in MIami FL Checking in. IT has been over three years since I visited the MPIP. I have been doing fine. Last three or Four PET/CAT scans have been negative. Shaking hands with NED again. For you that don't know me I have been dealing with Melanoma since 1996 when a spot on my back started bleeding and biopsy showed it to be Melanoma.  IN 1999 it went into both lungs. Surgery for both a week apart. In 2002 it went inot my Pulmonary artery even after a year of interferon and 32 months of GM-CSF. God has been good to me and through of holistic medicine I am no longer a Stage IV  person but now NED. Just thought I would check in and thank again all the people that have helped me in the last 17+ years of deealing with this Insidious disease. I talked to Jeff Patterson the other day for a short talk. Keep in touch with Martie Wrock another loing time survivor. I miss the old BB people but not the agrevation that sometimes went on. 5 years ago I was diagnosed with prostate cancer but it is under control with the hormone therapy "Lupron" last PSA was 0.3

Some of you people met my wife Carol in get togethers but I lost her to Brain Cancer last May. She is in a better place no Pain no more Chemo or surgery. I have her up in Lake Worth at the south FL National Cememtery and visit her often.

 

My Pat Net is under Allen C and I believe my home phone number is listed. MY email is redneck_77@att.net if any one wants to get in touch with me. I turned 79 this month and feeling fine and willing to help anyone that wants to hear about my road to NED.

 

May GOD Bless each and every one of you dealing with this disease and if there is anything I can do please email me and we can talk.

 

Allen Carr

Have a great day and a better tomorrow

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Hello to all the old timers. Allen Carr from here in MIami FL Checking in. IT has been over three years since I visited the MPIP. I have been doing fine. Last three or Four PET/CAT scans have been negative. Shaking hands with NED again. For you that don't know me I have been dealing with Melanoma since 1996 when a spot on my back started bleeding and biopsy showed it to be Melanoma.  IN 1999 it went into both lungs. Surgery for both a week apart. In 2002 it went inot my Pulmonary artery even after a year of interferon and 32 months of GM-CSF. God has been good to me and through of holistic medicine I am no longer a Stage IV  person but now NED. Just thought I would check in and thank again all the people that have helped me in the last 17+ years of deealing with this Insidious disease. I talked to Jeff Patterson the other day for a short talk. Keep in touch with Martie Wrock another loing time survivor. I miss the old BB people but not the agrevation that sometimes went on. 5 years ago I was diagnosed with prostate cancer but it is under control with the hormone therapy "Lupron" last PSA was 0.3

Some of you people met my wife Carol in get togethers but I lost her to Brain Cancer last May. She is in a better place no Pain no more Chemo or surgery. I have her up in Lake Worth at the south FL National Cememtery and visit her often.

 

My Pat Net is under Allen C and I believe my home phone number is listed. MY email is redneck_77@att.net if any one wants to get in touch with me. I turned 79 this month and feeling fine and willing to help anyone that wants to hear about my road to NED.

 

May GOD Bless each and every one of you dealing with this disease and if there is anything I can do please email me and we can talk.

 

Allen Carr

Have a great day and a better tomorrow

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