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.

Expand/ Collapse Topic
 
Replies By
View Topic
fucancer44's picture
Replies 7
Last reply 9/9/2014 - 11:17pm

My name is Emily and I am asking for help regarding my beloved brother in law, Justin. He was diagnosed in January with Acral Lentiginous Melanoma which began on his pinky toe, but had progressed to his groin lymph nodes. He had his toe amputated & the lymph nodes removed and then began Interferon infusions (5 times a week for a month) in May and then subsequently underwent subcutanous interferon injections 3 times weekly. PET scans, MRI, etc... were all clear of any current disease process as of May and everything was going as well as it could when he had another PET scan in August that revealed "2 suspicious spots" on his femur and lower vertebrae. MRI and radiographs confirmed our worst fear and he indeed has 3/4 of an inch lesions on his femur and L2 vertebrae. The oncologist then stopped the interferon injections and we are now 3 weeks out from having nothing done to him. We have been met with a HUGE roadbock because everyone says there are no clinical trials we can get him into because his melanoma is "just in the bone" as if that isn't bad or something. The oncologist wants to put him on Yervoy, but has said that overall when used alone it doesn't always have the best results. I've done tons of research and I know that there are many drugs in clinical trials that are used in CONJUNCTION with Yervoy and have had great results. And just yesterday they FDA approved a new drug, "Keytruda" that typically follows Yervoy treatment and has had great results. Basically we need help. We need a melanoma specialist. Someone who will take this rare type of melanoma seriously and get him the help he so desperately deserves. He is 39 years old and has 4 children (ages 10, 7, 20 months, and 8 months) that he needs to see grow up.  We live in Oklahoma but we will travel ANYWHERE. When he was initially diagnosed we got a second opinion at MD Anderson, but so far we haven't been able to see if going back there a second time would be worth it as they are not saying they can do much at this point. PLEASE help. Any referrals or recommendations would be greatly appreciated. 

Thank you in advance. 

God bless every single one of you who rally in this fight against this horrific disease.

Login or register to post replies.

Hi,

I really would like as many stage 3A friends on here as possible if you would please respond...   I find myself with all sorts of issues, questions, feelings, well, everything that sometimes I feel is either too heavy for earlier staged melanoma patients, or way too trivial for even more advanced staged patients...  please get together with me if you would...  if you were previously stage 3A and would like to share I would appreciate also.  Right now everything is so new to me...just need to express how I feel and don't want to offend anyone.

IT'S YOUR BODY AND YOUR LIFE...BE INFORMED!!!

Login or register to post replies.

BarbaraJean's picture
Replies 1
Last reply 9/9/2014 - 2:41pm
Replies by: Janner

I have a lump that has developed in the crook of my left elbow. Since I've had no melanoma reoccurence since the original tumor 12 years ago that was found on my back and drained under both my arms, I'm a little concerned. I went to a doctor a few weeks ago and she diagonoised me with tennis elbow but I wanted a second opionion. I saw the surgeon yesterday since my doctor was not comfortable with a second opionion without a biopsy on the mass. The surgeon wants to remove the mass and send it to pathology and here in lies my concern...should I have the surgeon remove  it or wait to see if it goes away and should I have surgery on my arm since I suffer greatly with pain for the original surgey 12 years ago? I don't know which way to turn. It hurts to bend the elbow because of the lump and so I don't know what to do..

Login or register to post replies.

MattF's picture
Replies 6
Last reply 9/9/2014 - 11:59am
Replies by: Anonymous, jualonso, Bubbles, arthurjedi007, BrianP, ecc26

Been a while....

Stage IV since Dec 2013

BRAF Combo effectie fail after 6 months.

on 3rd infusion of Ipi next week.

 

Recent scans (July) showed 7 new spots on the brain. 

Start RadioSurgery on Tues 2 Sep 2014....

Still on Ipi and Xgeva for other tissue and bone mets.

 

So the brain mets...largest being 1.9cm x 1.5cm are the closest alligator to the canoe now and the immediate issue.

So the plan is in place.

Matt

oh as a side note anemic with low hemoglobin over the last 14 days needing 2 blood transfusions...so that also is of course on our radar.

 

Login or register to post replies.

Kenny's picture
Replies 9
Last reply 9/9/2014 - 7:55am

This is my first post, I have read a lot on this forum recently and have been very thankful for the content.  

I found out on March 25, 2014 that I have melanoma.  What started out as a very small spot on my upper left back about the size of a pencil tip has turned into stage 3a melanoma.  It was also found in one lymph node under my arm.  I had a axillary lymph node dissection on April 25th and no melanoma was found.  I had the melanoma tested for the BRAF mutation and I do.  I have been looking into treatment and have this as an option.

Does anyone have any experience with this trial?  I have a meeting on Monday June 16th to go over the details.

Thank you,

Ken

 

GSK BRF115532

A phase III randomized double blind study of dabrafenib (GSK2118436) in COMBInation with trametinib (GSK1120212) versus two placebos in the ADjuvant treatment of high-risk BRAF V600 mutation-positive melanoma after

Key Eligibility:

  • Completely resected histologically confirmed high-risk Stage IIIa, IIIb or IIIc

  • Must be surgically rendered free of disease no more than 12 weeks before randomization

  • BRAF V600E/K mutation positive

  • No prior systemic anti-cancer treatment (chemotherapy, immunotherapy, biologic therapy,

    vaccine therapy, or investigational treatment) or radiotherapy for melanoma allowed. For more information: NCT01682083 

 

Ken Sears

Stage 3a 

Login or register to post replies.

Replies by: Melissag0624, Ginger8888, none1234, Anonymous

Hey guys,

I'm a bit lost and was hoping for some advice. I was diagnosed with a benign spitz naevus at the age of 13 which was surgically removed back then. In 2010 i noticed a small lump on the edge of the scar tissue from the old excision and had it removed. Back then it was identified as excess scar tissue (hyperplastic scar tissue). The following years the lump returned and was removed 3 times (always approx 12 months in between) with identical characterization.

Now in 2014 the last excision was reviewed with more care and identified as a desmoplastic melanoma with slightly increased proliferation no ulceration and no apparent metastasis in the draining sentinels, no circulating S100 in the bloodstream and a clear sonography.

Due to the fact that the tumor was mistaken for hyperplastic scar tissue there was never a clear staging or assessment of invasion depth.

After the last excision the area stayed free of any unusual changes and i entered a regular postoperative screening schedule. 

Now to the crucial part: My treating institution scheduled me with a low dose intron-A therapy which is to be continued for 18 months. I am on it for a month now and the side effects are very very very unpleasent.

To my understanding the overall benefit of Interferon for survival was seldomly demonstrated. 

Does it make sense to continue the treatment and risk my general good health and healthy mental state (retinal damage/depression/general immunosuppression)? I would suspect that the reoccuring growth was due to the fact that it was never fully removed and always still there right after surgery. Overall malignancy was suspected but not finally clearly demonstrated. 

I can not get a definite statment from my responsible institution.. their remark was that they have to recommend it when the staging is not clear.

Best,

Lars

Login or register to post replies.

Colleen66's picture
Replies 1
Last reply 9/8/2014 - 11:49pm
Replies by: Melissag0624

Has anyone else developed Keratitis following Imunotherapy, specifically HD Inf.?  During the 4 week treatment my eyes were badly effected with inflamation and pigment changes.  Now the eye Doc is suggesting Plunctal Plugs to help with this.  

Any insight would be helpful.

Colleen

Live!

Login or register to post replies.

rjr11273's picture
Replies 1
Last reply 9/8/2014 - 11:23pm
Replies by: Melissag0624

I had a 2.1mm tumor removed with wide excision from just above my right knee on August 19 and an SLND done as well with these results: superficial spreading melanoma with nevoid features, maximum tumor thickness 2.1mm, ulceration present, mitotic rate =4, 4 of 4 lymph nodes with micromatasteses. I am awaiting results of scans done on Friday

i am scheduled for further lymph node dissection on the 24th. Dr. Flaherty at MGH is recommending I begin pegylated interferon weekly self injections 4 weeks later due to the increased RFS for the subset of positive lymph node and tumor ulceration in the large trial done in Europe. Assuming the scans come back with no measurable metastises. I am also changing my blood pressure medicine to propranolol, just in case there is a benefit that will be tested soon at the university of Geneva clinical trial

my questions are, has any one done the weekly pegylated interferon treatment? What were the side effects you experienced and how well did you tolerate them? Did you have the side effects every day? How long did you stay with the treatments?

Login or register to post replies.

Exhausted's picture
Replies 7
Last reply 9/8/2014 - 11:08pm
Replies by: Exhausted, Patina, Janner, Anonymous

Hi,

I have a very dark brown mole that is literally 1mm in diameter that I've had for years that I am a bit concerned about.  My dermatologist has no concern, but I started searching the internet and found multiple stories of people talking about "pin head sized melanoma" which are getting me a bit worried.  However, I can't seem to find any pictures to compare.  Does anyone here have pictures, links to pictures, or experience with a literal pinhead sized melanoma?

Thank you!

Login or register to post replies.

AlkiDancer's picture
Replies 1
Last reply 9/8/2014 - 10:06pm
Replies by: Janner

I am a 36 year old female with a VERY heavy family history of cancer including a mother who had melanoma, breast cancer and ovarian cancer who died at age 51.

 

I have a dark wide line on my right thumb and a wide lighter line on my left thumb of which I have now been to two derms for.

 

The first told me it was concerning but she didn't have the medical experience to biopsy. The second agreed to biopsy then the day of the appt. changed his mind. I was so angry I actually broke out in hives.

 

So, now I am looking for a derm in seattle that can see me SOON adn biopsy this thing. Seattle Cancer Care referred me to UW Derm but their nail derm can't get me in till Jan its early Sept.!

 

There might be a doctor assoicated with Swedish who does this biopsy but they were not sure till they could talk to him when he is back in clinic later this week... which really did not make me feel great about this over all clinics knowledge.

 

Any advice?

Login or register to post replies.

Replies by: BrianP

There will be a Melanoma Support Grop meeting at 6:30 at the Life With Cancer building at 8411 Pennell Street, Fairfax, VA 22031. (map it)- https://www.google.com/maps/place/8411+Pennell+St,+Fairfax,+VA+22031/@38.8634182,-77.2351737,17z/data=!3m1!4b1!4m2!3m1!1s0x89b64c816dd8a3fd:0x42190d8850b50cc4?hl=en)

A ljuncheon earlier at a different Life With Cancer location  - about nutritiona -     Cancer with a Fork-IAH 2014:
http://www.lifewithcancer.org/ajax_classDateInfo.php?classDateID=13436

 
I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 9/8/2014 - 9:47pm

Just wondering people's thoughts on what is the best course of action. If melanoma is detected in a major organ (lung, liver, spleen, etc) and it is resectable, is that usually the best route to take - go in and get rid of it?  Or would one consider some type of therapy (I.e. Yervoy, ipi, etc.)?  Not sure of there are any residual affects if it is just taken out. 

Login or register to post replies.

Pages