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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phtreehuggr's picture
Replies 3
Last reply 4/4/2014 - 3:55pm
Replies by: phtreehuggr, kathycmc, Anonymous

My mom had this done years ago and there was nothing found in the sampling of nodes they took. At the beginning of this year they found a golf ball sized tumor in her abdomen, and later other ones, regionally. The excuse for this is that there is an small error rate in the test.

WHAT? I understand nothing is perfect, but c'mon, that is a piss poor excuse. She went back for skin checks every 6 months following the SNLB and nothing was found. They never checked her glands. Had they done so, they would have felt that her glands in her pelvis were clearing swollen. She never noticed them until after the diagnosis, and then it became apparent to everyone that it was clearly more swollen that the nodes on the opposite side.

My initial thought was...why were they just doing skin checks and not scans? Of course, for the small number of people that experience was she has experienced, insurance agencies are not going to cover expensive testing like this just for 1-2% of people.

Following her diagnosis, she gets a PET scan. For which she is told is 97-98% effective in detecting melanomas. Wrong again. Her scan showed nothing other than the golf ball size mass in her abdomen...turns out there were several other, smaller (but not so small they shouldn't show up on a PET scan) areas that contained melanoma.

Are there no alternatives? Going forward, how is she suppsoe to know whether or not the melanoma has resurfaced?! I mean, really, I just don't get it.

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/4/2014 - 3:23pm
Replies by: Mat, Bubbles

Hi,

I have been diagnosed with stage IV melanoma with mets on liver / lungs, etc. 8 weeks ago and I am now taking GSK'S combo. The doctor said Ipi was not an option as it is not clear wether I would respond at all and if I did on time to survive. Initial response could take up to 4 months.

Now I am reading that there are patients for whom the combo still works fine after 3 years, for others it stopped working after 5 months. The abarage according to a trial being 10.5 months.

I also understand that after discontinuing the combo about 50% show a rapid progress of their desease, in 50% cancer growth seems to be stopped or very slow.

Now I am kind of worried that I might run into the same problem in a few months again (of course I am praying and hoping for the better outcome) that Ipi may be too slow to help!

I hope they extend compassionate care for PD1 to Europe soon so I have a chance.

Does any of you have any other ideas what could be possible options after BRAF / MEK? I also heard that there are trials of PD1 and / or Ipi together with BRAF / MEK or discontinuing BRAF / MEK rather during a time when it works well and switching to other drugs instead of waiting until the melanoma is already spreading again.

Does any of you have experience with such a situation and knows of any soutions? Is IL-2 still an option?

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Everymoment's picture
Replies 5
Last reply 4/4/2014 - 2:36pm
Replies by: tcell, Everymoment, kpcollins31, Anonymous, KMick

You know, I keep thinking there might be a time when every ache & pain doesn't bring me to my knees grappled with fear. My mind is my worst enemy. Once you have melanoma, it is part of your mindset. I realize that for my entire adult life, I live in this state if acute awareness that my body does not function like everyone else's. It's kind of sad:( I realize that I'm not like other people my age.
Isabell

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Leslie'sHusband's picture
Replies 4
Last reply 4/4/2014 - 1:16pm

Our consult @ Duke yesterday left us with mixed feelings.  We were a bit disappointed that the slides of the tumor and lymph node had not been reviewed by the pathology labs before our visit yesterday.  On the upside of that, we are happy that they are not just taking the other lab's word for things and are looking at things for themselves before making any diagnosis and plan of attack. 

 I was also a little disappointed that my main question about the minimally invasive lymph node dissection was not answered until we got the consent form for the surgery to take home.  I asked "Are you seeing any improvements in recovery times and fewer complications with the minimal invasive surgery?"  The answer was essentially "it's still a trial, that's why we're offering it."  The consent form, however, states that wound complications are about 18% with the laproscopic surgery, and about 65% with the conventional surgery.  Those numbers may be off a little, I don't have the form in front of me now.  They gave us the consent form so that we would have it ready in the event that their lab confirmed the presence of melanoma in the lymph node.  "We see more melanoma in a week than most of the local doctors see in a year, lets wait and see if our labs confirm the lymph node diagnosis before we schedule surgery."

Les is committed to having the laproscopic lymph node removal done at Duke if their lab confirms melanoma in the SLN.  Treatment afterwards is still up in the air...

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/4/2014 - 7:49am
Replies by: Anonymous

Feeling frustrated with treatment in the UK. Noticed lots of posts on here indicating that you have surgery to remove mm ever if in lots of places  before starting drugs like ipi. In the UK it's just drugs alone. How does that give us a fighting chance to survive?

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Nickm's picture
Replies 5
Last reply 4/3/2014 - 10:28pm
Replies by: Nickm, Tim--MRF, benp

I am writing on behalf of my father who was diagnosed in June 2013 with a mets in his lymph nodes as well as his lung.  He had successful surgery in Dec 2013 and was recoverying well until he sneezed one evening, had a massive brain hemorrhage and we subsequently learned that he has two mets in his brain one of which obviously bled.  He has had wbr since and 1 tumor appears stable(the one that bled) and the other has grown minimally.  Our onco has said there is nothing left to do because of the tumor that has grown after wbr and is asking us to wait 6 weeks to see if he is stable at which point we can possibly look at systemic treatment.

My question is to those of you with profound experience - does the oncologists approach sound right?  I believe in second opinions and also thought that the goal was to shrink rumors that are growing.(I do relize that wbr didn't work however)

thank you in advance.

 

m

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It started with what just looked like a little pink dot on my forearm.  I ignored it.  Over 3-4 months it got bigger and puffed up.  It had no color and just looked like a weird blister.  I went to my regular MD and she said it could be a basal cell carcinoma which is no big deal because they don't metastasize and grow very gradually.  She referred me to a dermatologist to have it checked out.  I saw him a month later and he looked it over thoroughly and also thought it was nothing more than a basal cell carcinoma.  He cut it out and sent it off for a biopsy. 

Two days later I was then frantically called by his office and told I needed to get in as soon as possible, but they wouldn't tell me why. When I got there he sadly and apologetically told me that the lab results had come in and it is actually a nodular non-pigmented malignant melonoma at Clark's level IV, Breslow's thickness, at least 1.75 mm and transected at a deep margin (in situ melanoma in adnexa).  He said it is a deep tumor which is VERY serious.  I went into shock and my mind went blank.  For a few minutes I didn't hear what he was saying and just heard murmuring.  I had no idea this could possibly be a melanoma.  I have seen numerous images of them and what I had that he cut out looked nothing like one because it had no color of any kind.  If it had I would have rushed to the doctor much sooner.  He checked over all of my skin everywhere and felt all of my lymph glands and abdominal organs.  He said he could not see anything that looked like other melanomas and my lymph glands and organs felt ordinary which could be promissing. 

He has referred me to a melanoma specialist in San Francisco where he said they will inject me with blue dye and/or some kind of radiation stuff to see if the melanoma has metastisized to my lymph glands or anywhere else that will then result in surgery.  He also said that they will also likely remove more of the the area around the melanoma nodule that he may only have partically removed to hopefully get it all out.  I have to go and get blood tests done and two chest xrays today, and they are in the process of setting me up to have a PET bodyscan (hopefully this week).  I am still in shock.  I don't know what to think because I feel perfectly fine.  I am just scared $hitless (sorry for the cuss word) right now and don't know what to think.  I am just hoping this evil, destructive thing that has invaded my forearm has not moved to other parts of my body.  My love of the sun, gardening, and the beach (even though I always wear sunscreen) has turned against me.       

     

jazzygal ♥

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Editor's summary

Melanomas carrying a mutant BRAF gene generally respond to treatment with BRAF inhibitors, but in the majority of cases resistant cancer clones emerge. It has been shown that such resistant clones can nevertheless exhibit reduced fitness when the drug is removed. This paper demonstrates a molecular mechanism underlying this observation. Rene Bernards and colleagues show that a signalling cascade leading from suppression of SOX10 to increased expression of the EGFR (epidermal growth factor receptor) gene confers resistance to BRAF inhibitors and at the same time reduces melanoma cell proliferation and induces senescence in the absence of inhibitors.

With preliminary evidence that this pathway is induced in patients who have developed resistance, the authors suggest that temporary withdrawal of BRAF inhibitors — a drug holiday — would reverse induced EGFR expression and thus may re-sensitize melanoma cells to BRAF inhibition when treatment is reinstated.

 

http://www.nature.com/nature/journal/v508/n7494/full/nature13121.html?WT...

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/2/2014 - 8:53pm
Replies by: Bubbles, pigs_sty, POW, kylez, Brent Morris, Anonymous, dhrahn

I have been diagnosed with multiple brain mets and told that gamma knife is not an option. Therefore was wondering whether anyone had been a complete responder just using ipi?

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http://www.nature.com/news/cancer-treatment-the-killer-within-1.14955?WT...

 

Cancer treatment: The killer within

The immune system can be a powerful weapon against cancer — but researchers are still grappling with how to control it.

 

02 April 2014

 

(this is quite long and covers melanoma and other cancers)

 

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Replies by: hbecker
Anonymous's picture
Anonymous
Replies 1
Last reply 4/2/2014 - 3:31pm
Replies by: Anonymous

 I cannot find a post from April 1st that discussed errors on scan reports so that I could respond to it. Anyone  know why it is no longer posted? People like to read threads so that replies make sense.

 I thought that  others would be interested in knowing that I to have had a bad experience at The Angeles Clinic radiologist's missing mets on my scans more than once.

I have also spoken to other patients at The Angeles Clinic that months after receiving their scan reports from the Radiologists at the Angeles Clinic that other doctor's like neurosurgeons, and other surgeons have found that scans reports were not correct.

In my particular case, I have been going to The Angeles Clinic "On and Off" cliniical trials for yrs. There are 2 Radiologists that read scans at The Angeles Clinic. Unfortunately, and to my dismay, BOTH Radiogists have missed mets and made errors on my scan reports.  I know get at 2nd opinion on all my scan reports. It is very disheartening that you cannot trust the Radiologists reports at The Angeles Clinic.

I want to WARN others, particularly patients at The Angeles Clinic, to get a 2nd opinion on Scan Reports. It is better to be safe than sorry.

 

 

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My Dr office has LDH at 100 - 250 as normal. Mine has been around 190 for as long as I know until this month.

On 3/3 it was 259. Dr thought it was the T10 vertebrae and the radiation would cause it to drop but it hasn't.

On 3/31 it is 396.

My Dr mentioned it was still high but when I left I got the report and I'm like what the heck. That's a huge jump. I also know I've been feeling a bit lousy for over a month.

Any advice what I should have my Dr do to find out what is going on? Currently he's not planning on doing anything except continuing to try to get me into the Merck PD1 EAP.

Any advice on anything I can do about it?

 

 

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