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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Colleen66's picture
Replies 2
Last reply 6/29/2014 - 4:52pm

I'm really upset and anxious.  My history is up to day with the high points.  I've been stalble over a year and a half after 4 weeks HD INF.  This May I got some kind of mystery virus. and acquired two areas on eith side of my neck of hyperpigmentation.  Local Doc says rash from sun/alergies...whatever.  It dosnt itch, not inflammed.  then a couple more weeks and I am developing Vitiligo.  Derm says, yup, thats what you got.  Told him about this neck pigment thing again. He just gives me a sterioid cream.  I am so done with this local Derm.  When I go in for a skin check he says...what do you want me to look at....(I could scream....all the freaking changes my skin is going thru)  If I don't point something out he just glosses of everything.  My skin has changed more since this mystery virus than in my whole lifetime.

(Breathing)  Ok.  I also recall during my INF treatment I had to see the Eye Doc, I was having a side efffect of swelling, sensativity and migraines in the eye.  At that time I had pigment changes to the back of the retina.  (Vitiligo?)  I'm getting more inflamation, pain and migrains in my eye again.  All head pain goes to this eye, I hate it.  I'm clalling Monday for an appointed with her.

So I sent an email to my Medical Oncolgist this morning asking for guidance.  I explained just as I have with you guys.  Asking to point me to a Derm who has experience with all of the issues or if they wanted to see me.  

Local Derm is suggesting sterioid treatments and sun therapy crap and I'm like.....HEY  why would I want it to stop if it might possibly help the melanoma situation.  ugh.  I'v read all the published material about this and just get more confusted as to any recommened treatment with these things going on or not treatment at all or just become entirely anxiety ridden and start wearing gloves in the summer to my new skin doesn't burn.

Sorry guys, I'm just lost with these developments and even if it means anything and anything should be down.  I'm getting more depressed by the day just watching these white patches creep bigger.  I've noticied its creeping down my forhead now and out from my ears.  It started on the right hand with is a mess now and the lef hand is looking like it will match.  I'm very fair skinned so I think I notice it more than any one else would.

I just wonder if all this is happening on the outside if anything is happening on the inside too.  This is why I jump on the anxiety train.

Should hear about some guidance tomorrow I hope.  Trying to keep my PMA but its hard some times.

I don't even think I have any questions,  I don't even know if that all made sense,  Just wanted someone to know what I'm goin thru and if there is any advice out there.

Thanks Colleen

 

Live!

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ocelot's picture
Replies 5
Last reply 7/1/2014 - 1:00am

Hello everyone, 

 

I'm back with what is probably only the beginning of the newbie questions.

The basics: fiancé diagnosed with melanoma last week. Breslow thickness 1.15 mm, Clark level 3/4, mitotic rate 1, no ulceration, melanoma excised with clear (but very narrow) margins, abdominal ultrasound, chest x-ray and bloodwork all clear. First appointment with melanoma specialist the week after next. 

We anticipate that the next step is the wide local excision and the sentinel lymph node biopsy. We are really hoping that the SNB comes back negative.  If it doesn't, I guess we start looking at treatment options.

If it is negative, however, are there other scans or imaging technologies we should be pushing for to ensure that there really is no melanoma elsewhere in the body? I've read about PET and MRI scans being used in more advanced cases, but it sounds like for stage 1 melanomas, if the SNB is negative, doctors usually say "congratulations" and send you home. However, fiancé is concerned that the SNB might miss some signs of spread. Would it be worthwhile to push for further scanning (in addition to the already-completed chest x-Ray and ultrasound), or would that be excessive? (I should add that we're in Canada so insurance coverage or costs are not an issue).

Thanks  in advance for any ideas you might have. 

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soccerchick's picture
Replies 1
Last reply 6/28/2014 - 6:14pm
Replies by: BrianP

I've posted here a few times, so I had a mastectomy march 31 the surgeon removed a  melanoma tumor that was 7 x 4 inches, I had had a breast implant about 24 years ago that was flattened like a pancake, my doc had to peal it off my muscle wall and believe it or not there was melonoma cells on the implant, I have benn treated and MDAnderson for almost 3 years and they have managed to keep in contained thus far, I've tried Ipi 7 months of chemo with a braf inhibitor , il2 , a Mek and braf inhibitor when the tumor started growing like a weed, surgeon has always been reluctant to do another surgery, 3 but the tumor was causing too much pain, the surgeon was able to close me, but of course a ton of tissue was removed, all do my margins were not clear, spent weeks with the worst pain of my life but was finally able to get some relief with a thoracic nerve blocks, so finally I was able to enroll in the compassionate part of the anti pd1, Mek 3475 I think, and was the 1st patient to receive it at mad, so I have a tumor now under my  right armpit, my mastectomy and complete lymph node reval almost 3 years ago was on my left side, I also have a lump in my left neck and lo and behold I just found a big lump on my left side towards my back, getting ready to have 3rd dose of pd1 next week and scans after 4th dies, so far have manged to keep it mostly in lymph system and sub q so far except last scanshowed a few spots on the pleura of my lung, I'm hanging in there but am starting to feel like my option if this one doesn't work are getting slim, but hanging on and continuing to work the best that I can! Mitotic rate 13, which I hear is high dang it!

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Hi there - my husband was diagnosed stage 4 on Tuesday with several smalle tumors in his a liver. His primarily melanoma was on his scalp and successfully removed along with a lymph node which came up clean. He is starting immunotherapy next week.

They gave us a 30 page packet of Yervoy side effects so it's hard to determine which we should actually expect and plan for. I've read about joint pain on here so believe that can be a real issue. My husband is 27 and healthy aside from all this and being treated at UCSF. 

Also I have the same questions about PD-L1 and MEK which  is the clinical trial he'll get into if we don't see immediate results from the Vervoy.  Any insight is much appreciated!

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tcell's picture
Replies 4
Last reply 6/30/2014 - 11:37pm

Hi all,

would appreciate any kind of info on the following:

Since I startred te taf / mek combo in February when I had lots of mets and rather high levels of s-100, the marker has constantly gone down. Scans a month ago showed considerable shrinkage of all mets.

I had another appointment at the clinic this week and just got a call that s-100 has now gone up and is slightly above the upper limit. They say not to worry as this could also be caused by the decay of tumor cells Obviously it should be enough that I come again for my next monthly appointment.

Do any of the stage IV folks have experience with S-100 and that it could suddenly go up and then down again without any need to worry?

Thanks!

Chris

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dhrahn's picture
Replies 3
Last reply 6/28/2014 - 6:45pm

It all happened so fast.  After the second infusion of PD1 they have decided that my husband Dave is progressing to rapidly to continue.  It has moved to his spine causing a compression fracture in vertebrea, also to pelvis and liver.  It is surreal.  As christians our faith is what carrying us through.  We know God has a plan and he will guide and give us peace during this very challenging time.  We are going to try to go back on zelboraf (which we have done) and add Mek inhibitor to see if it may add any time and comfort.  They have said it may be 2 weeks it may be 2 months.  I appreciate all the information and people that have shared there stories and lives.  What a blessing it has been.  God bless you all!  May you all have peace during these trying times.

Dave & Holly Rahn

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ltalley's picture
Replies 8
Last reply 6/28/2014 - 8:02pm
Replies by: ltalley, Anonymous, LuckyMan51, leslieann79, JerryfromFauq

I was dx with melanoma in December of 2013. It was a .30mm SSM, no ulceration, no mitosis, no lymphovascular invasion seen, clark level 2 lesion. I had my WLE in January and now just going to my every 3 month check ups. In the beginning my shock kept my fears at bay, then my 15 year old cousin was killed, and 20 days later my mother died.... So I believe my mind was too occupied to worry if I was gonna be ok. But now that everything has calmed down I find myself worrying all the time if I'm going to be around for my kids. I have also done the dreaded searches on the net and really don't see a lot of good news when it comes to melanoma. I mean even early stagers have reoccurrences and die from this horrible disease.. Right now I just could use some encouragement... thanks ahead of time to all who replies...

Living Life!smiley

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/2/2014 - 1:45pm
Replies by: mbaelaporte, Anonymous

I have stage 4 and have stopped working for about 6 months, currently on the GSK combo. I have successfully obtained copay help through Chronic Fund foundation, for those of you needing help with prescription copay, their approval process is 24hrs. I submitted online application, 2 days later, I was approved. For those of you needing financial help, this is a good place.

I am unsure where to go for help with my mortgage? I don't know if I should tell my lender about my diagnose, I am still current on my mortgage, but finding it harder & harder to make the payments. Has anyone reached out to their lender and obtained a successful outcome?

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/28/2014 - 12:52am
Replies by: Anonymous, Sherron

I have stage 4 and have stopped working for about 6 months, currently on the GSK combo. I have successfully obtained copay help through Chronic Fund foundation, for those of you needing help with prescription copay, their approval process is 24hrs. I submitted online application, 2 days later, I was approved. For those of you needing financial help, this is a good place.

I am unsure where to go for help with my mortgage? I don't know

if I should tell my lender about my diagnose, I am still current on my mortgage, but finding it harder & harder to make the payments. Has anyone reached out to their lender and obtained a successful outcome?

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Anonymous's picture
Replies 4
Last reply 6/27/2014 - 10:43am
Replies by: Anonymous, Kim K, kylez

I am six years NED from stage IV. Since early winter I have had nagging sinus issues even when I do not have a cold, sinusitis or allergies. It presents as a watery, intermitant discharge from one nostril and has occurred randomly over the past six months, especially when I lean over. I was not concerned until I seemed to have experienced a visual hallucination. I have not had headaches, but was waking with dizziness about a month ago. I always feel like a hypochondriac when I think I may have a brain met...but, has anyone experienced anything similar before a brain met diagnosis? Thanks for any insight and I applaud all brave patients who have remained active on this board when I have had to take a long break in order to live my post stage IV life and deal with the survival guilt of my extended NED status. Thank you to all the caregivers, here as well.

NancyGM

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arthurjedi007's picture
Replies 7
Last reply 6/28/2014 - 4:46pm

Dunno if this info helps but I saw my local doc yesterday and was suprised to hear some of his patients he sent to mayo have been turned away from Merck's EAP PD1 NCT02083484. He said it is because they were in wheel chairs.

As we see on clinicaltrials.gov this does require a 0 or 1 for the Eastern Cooperative Oncology Group Performance. I guess I never noticed that before eventhough I had read it several times. So if you are trying for this trial and are in a wheel chair I dunno what to say about it other than my own story. Back in February the docs were saying I was a hairs breath from being paralyzed. They said anyone else with that much spinal cord damage would already be paralyzed. So yeah I was in a wheel chair some. But I got some good radiation to the tumor that was pressing on my spinal cord that shrank it by about half so now I walk my 2 miles a day and get this PD1 just fine. Also before the radiation they gave me steroids that a scan in preparation for the radiation proved in the matter of a week or so provided more room in the spinal canal for the cord thus making walking much easier. So I dunno what else to say but I hope everyone who needs this medicine gets it somehow.

 

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ocelot's picture
Replies 5
Last reply 6/26/2014 - 10:44pm

Hello everyone, 

 

My fiancee was diagnosed yesterday with melanoma. We are still in shock, and trying to make some sense out of it. We;ve been to a dermatologist and have an appointment set up with a melanoma specialist the week after next. I expect that further excision (to increase the margins) and a sentinel lymph node biopsy are in the offing, and then whatever the biopsy indicates will shape what happens after that. 

 

Here is what we know so far, based on the pathology report for what looked like "just a mole" and the other tests that have been done:

Breslow thickness: 1.15 mm

Mitotic rate: 1

Location: behind ear

Depth of penetration of skin: to the point where the epidermis meets the subdermis but not subcutaneous (as far as I can follow pathology-speak)

Primary melanoma completely excised with clear margins, although very narrow  (1 mm hoizontally and 3 mm vertically)

No swelling or symptoms in lymph nodes, chest x-ray, abdominal ultrasound and bloodwork all clear of any abnormalities. 

 

From what I can figure, this looks like Stage 1B to me. However, the dermatologist we spoke to was quite ominous, talking about "spending quality time with your kids", "be grateful for each day you have", and "don't plan anything for the next year". So we are panicking on one hand, and slightly reassured by the high success rate for early cancers on the other. 

For those of you who have been down this road, what would your advice be at this point, in terms of what we should expect or what we should be doing? I realize there are dangers in getting information off the internet, but I also would appreciate any wisdom from this group.

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(Reuters) - A late stage trial testing Bristol-Myers Squibb Co's cancer immunotherapy nivolumab in advanced melanoma patients was halted early after it was determined that the drug was likely to prolong survival, the company said on Tuesday.

The 418-patient Phase III study, called CheckMate -066, was testing nivolumab as an initial, or first line, therapy for patients with advanced melanoma, the deadliest form of skin cancer.

An interim analysis performed by an independent data monitoring committee found evidence of superior overall survival in patients receiving nivolumab compared with those who received the chemotherapy dacarbazine, Bristol said. The committee stopped the study early to allow the dacarbazine patients to switch to the Bristol drug.

Nivolumab belongs to a new class of medicines called PD-1 inhibitors that have generated great excitement for their ability to help the immune system recognize and attack cancer.

Analysts have forecast multibillion-dollar sales for the drugs being developed by several companies once they gain regulatory approval.

"The outcome of CheckMate -066 ... represents the first well-controlled, randomized Phase III trial of an investigational PD-1 checkpoint inhibitor to demonstrate an overall survival benefit," Michael Giordano, Bristol's head of oncology development, said in a statement.

Independent monitors routinely analyze data from blinded trials at various points and can stop a study if a safety problem arises or if the study drug is seen as likely to prove clearly superior to the control medicine

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I saw an article online today, although I am having trouble finding it again. I saw it on yahoo but it was saying some people from MD Anderson tried IPI on pancreatic cancer and it responded very well. My mom died of it 5 years ago and she suffered tremendously so I found this very interesting. Looks like they are really on to something with immunotherapy. This gives me hope since I am taking IPI. Just thought I'd pass it along.

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Brendan's picture
Replies 10
Last reply 6/30/2014 - 6:20am

Hi Everyone,

I have now been stage IV for almost three years (Sep. 2011).  I have read many posts here that have helped  me through some tough times, hopefully my news will help some of you.

I started PD-1 (nivo) in December.  I just had my final scans and, thankfully, I responded.  The target met (right lung) shrunk from 4.6 sq. cm to 0.42 sq. cm (90%) and the smaller met (left lung) is gone.  

Furthermore, today I had my brain MRI and my brain is clear. I had craniotomy #2 one year ago today (June 25) and my brain has been clear since.  

Good luck to you.

Brendan

I also posted this on MIF.

 

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