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
Owl's picture
Replies 3
Last reply 8/31/2013 - 5:30pm
Replies by: Tina D, bkinman, POW

Hello everybody,

my husband had scans last week and everything looks good. We are so happy! There are still some lymph nodes enhanced but nothing has increased in size and there is nothing new. He is on Zelboraf now almost  8 months, crossing the median. Side effects are still manageable though he's had a rough time with pain (joint pain and skin sensibility). Doctors recommend to stay on Z. The other option would be a break, wait for progression and enter one of the Anti-PD1 vs. Chemo trials that have also reached Germany. I think we are not really ready for it yet because Z is working so well. But we have this option in mind and will again discuss it with the doctors.

All the best, Jenny

Login or register to post replies.

MattF's picture
Replies 8
Last reply 8/16/2013 - 12:22am

so about 6 weeks ago I noticed a largish (jumbo olive) sized lump under right ear, sticks out through the skin, hard, fixed...about 1 inch from primary stage 1 (maybe 2 unclear with shave biopsy) melanoma WLE that I had last Sep 2012

I saw onc and derm and both wanted biopsy

ultrasound was today...radiologist found it immediately and if=dentified it as a mass on or in my salivary gland.

he took 3 different pulls with Fine Needle.....sending it away for results.

anyone have any insite as to melanoma spreading to salivary gland?

kind of wild because it is litterally under my SNB scar from where they pulled 2 nodes and told me they were clear.

Login or register to post replies.

presleerae's picture
Replies 15
Last reply 3/30/2016 - 3:31pm
Replies by: Anonymous, JerryfromFauq, Janner, MattF, presleerae

is it possible for the cancer to be elsewhere in the body with a stage 1 melanoma?  when my husband got the pathology report back from the biopsy the doc told us that he thought he got it all but that didn't mean it wasn't somewhere else.  that has really bothered me.  is it possible?

We go to dermatologist tomorrow.  what a long 2 weeks this has been.

Becky

Login or register to post replies.

aquamak's picture
Replies 4
Last reply 8/15/2013 - 7:27pm

It has been a long, stressful year since my original diagnosis in September 2012.  If you recall, a mole began to grow and change on my left neck.  After an inexperienced physician assistant at my local dermatologist told me it was a benign angioma and shaved it off, the pathology came back as invasive malignant melanoma (Breslow depth 1.5 mm at least, Clark level I, mitotic rate of 5 with no other “bad” characteristics).  I immediately went to Memorial Sloan Kettering Cancer Center and saw Dr. Steven Wang and on 10/18/2012, I had a WLE and SNB performed by Dr. Jay Boyle at Sloan.  Margins of WLE came back clear, final Breslow was 1.6 mm and a single Sentinel node removed, negative for melanoma.  Entire body PET scan and head CT clear also.  I was back to work a week after my surgery with no complications.  The second punch came on 10/29/2012 when Superstorm Sandy devastated the Jersey Shore and I began working the restoration efforts 7 days a week, 12-16 hours days at my employer, a local utility company.

During a much-deserved trip with my family right after Christmas, I noticed a lump right under my left ear above the scar from the WLE.  I saw the oncologic surgeon at Sloan on 1/6/2013 and he advised me that it was most likely nothing as I had told him I had a small infection at an ingrown hair in my scar.  Nevertheless, he had an ultrasound done right then and it came back as a slightly enlarged lymph node but nothing alarming.  He also performed a FNA, which came back benign.  I went on, assured it was nothing.  In April 2013, during a follow-up visit with the surgical oncologist, I told him the lump had not gone away and seemed to get larger.  He became more concerned and sent me for a full-body PET scan, which unfortunately came back showing 2 areas around the lump as suspicious for malignancy.  He then performed a very intense, painful FNA of the lump and scheduled me for a neck dissection and removal of my left parotid gland.  The day before the surgery in May 2013, the nurse called and told me the FNA biopsy came back benign.  I was still scheduled for surgery the next day however, they were first going to perform an excisional biopsy of the lump, do a frozen section and if nothing was found that was it for the time being.  If they found anything, they would perform the original surgery.  Unfortunately, I woke up after surgery with a drain and a scar from the top of my ear to the mid-line of my neck.  68 lymph nodes and surrounding tissue as well as my left parotid gland were removed.

The pathology came back 1 of 68 lymph nodes positive for melanoma plus 2 nodules of melanoma possibly infiltrating a nerve.  The perineural invasion later proved to be false after further testing but the nodules were considered in-transit metastasis.  This put me from a fairly “safe” stage 1B to a “serious” stage 3C in just 2 months considering when I first noticed the lump.  The doctors were somewhat baffled about the “elusiveness” of the recurrence and that the melanoma showed up as “spindle” cells considering my original site was primarily epitheloid cells. In addition, the pathology of the surrounding tissue showed the possibility that I may also have chronic lymphocytic leukemia (CLL).

So after additional visits to a leukemia specialist at Sloan, the CLL was ruled out but a pre-cancerous condition was considered however additional testing failed to prove that so a big sigh of relief on that front.

I was referred to Dr. Sandra D’Angelo at Sloan’s Melanoma unit for consideration into a clinical trail.  Two trials were offered, one for a Phase 2 trial of Dabrafenib as adjuvant treatment for Stage 3C melanoma patients with resected (removed) melanoma and the other for a Phase 1 trial of a dendritic cell vaccine against melanoma.  Unfortunately, I proved to be BRAF negative so the Dabrafenib trial was out.  I was very down about this but Dr. D’Angelo reassured me that Yervoy and the new PD-1 trials are better and more effective if I should have recurrence in the future and these are not BRAF dependent.

I was accepted into the dendritic cell vaccine trial and will have my stem cells collected on 9/11/2013 with my first of 5 vaccines to be given on 9/25/2013.  I chose to do the trail because frankly I feel like a sitting duck and live in fear of this disease every day.  I know that I will most likely have a recurrence but I want to give my self every chance to fight as I have a wife and 2 young children and I need to beat the beast.  I use the term “Mela-No-More” and live and hope by the words of Dr. Wolchuk from Sloan as he presented at the recent ASCO conference: “We have thrown the books out the window on melanoma and melanoma is no longer a death sentence.  It will become a chronic, manageable disease.”  I prayer every day for this and all afflicted by any cancer.

So, I wait for my 6-month PET scan in late-September and hope the trial provides some benefit to me.  My recent blood work all came back good with normal LDH levels and my full-body skin exam done today by Dr. Wang at Sloan was also good.

Please let me know if you have any suggestions for me going forward.

Mela-No-More

Login or register to post replies.

Sbnjb2002's picture
Replies 1
Last reply 8/14/2013 - 8:24pm
Replies by: POW

My husband is on ECOG 1609 trial 10mg Yervoy. Due to colitis he was pulled from any more Yervoy, however, he is now experiencing eye issues with elevated pressures in both eyes. Per the doc it May be the beginning stages of glaucoma. Unusual for his age. Has anyone else experienced eye issues as a side effect of Yervoy?

Login or register to post replies.

My husband is on ECOG 1609 trial 10mg Yervoy. Due to colitis he was pulled from any more Yervoy, however, he is now experiencing eye issues with elevated pressures in both eyes. Per the doc it May be the beginning stages of glaucoma. Unusual for his age. Has anyone else experienced eye issues as a side effect of Yervoy?

Login or register to post replies.

Holy moley!

"All cancers are caused by somatic mutations; however, understanding of the biological processes generating these mutations is limited. The catalogue of somatic mutations from a cancer genome bears the signatures of the mutational processes that have been operative. Here we analysed 4,938,362 mutations from 7,042 cancers and extracted more than 20 distinct mutational signatures."

 

http://www.nature.com/nature/journal/vaop/ncurrent/full/nature12477.html...

Login or register to post replies.

http://www.onclive.com/publications/obtn/2013/July-2013/ASCO-2013-Humani...

Published Online: Tuesday, August 13, 2013
Published Online: Tuesday, August 13, 2Just a good start. Working up on things but not near a magic shotgun yet. Still a long ways to go for most melanoma patients. Seen too many things that people jump on as cures over the past 10 years when they were just steps that may help some. 

Jimmy B (medical researcher) has been preaching this for years since he gained the NED status then figured out the T-cell development timing between his -"failed" Ipi trial that was followed by a standard HD IL-2 regime. I was sorry to see where they state that large tumor regressions were only observed in 31% of concurrently treated patients. I had hoped for higher since some trials have reported around 50% of participants had favorable results for the PD-1 alone. "Of importance was the observation that concurrent therapy was more active when compared with the agents given sequentially".

The way I read the article it certainly implies that all the participants in the 31% received both the Ipi and PD-1. Wish they had answered the PDL1 question. It is still under debate since the PD-1 also works in some people with no PDL1 expression

This is just a good step. Working up on things but not near a magic shotgun yet. Still a long ways to go for most melanoma patients. Seen too many things that people jump on as cures over the past 10 years when they were just steps that may help some, .

I was just surprised at the 31% response rate for trial participants. Do note that this was also for >80% reduction in tumor size. Too many details left out so far to know all I want to about it. Not sure just how these numbers relate to the 4-6% permanent CURE rate of IL-2 And 20-21% positive response rate from IL-2. Still a major numbers game for pharmaceuticals!

I was just referred to another study (2001) that is the first I've seen that ties IL-2 responsiveness to any particular type of Melanoma. 

http://jco.ascopubs.org/content/19/15/3477.full.pdf%20html#ref-8    ... says that "53.6% of patients with only subcutaneous and/or cutaneous metastases responded"  Only 12% of other melanomas reached the response abjective which was a 25% reduction is all tumors size.  Under the 2001 study I am not even considered a partial responder.  All the 49 bags of IKL-2 did for me was to kill my liver tumors aand stop all growth in my i nnumerabale lumg tumors for 20 months.  WHAT'S in a definitioin?

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

Login or register to post replies.

Amanda's picture
Replies 9
Last reply 11/18/2013 - 11:03am

So my boyfriend Randy go the results of his 24 weeks scans and all his tumors continue to shrink, and nothing new!!  Also his vitiligo is showing up more. First his forearms, and now his shoulders have white patches, and the majority of his beard and mustache is white.  Hopefully Lambrolizumab will work so well for all of you as well.  Prayers to all.  

-Amanda-

"Give thanks in all circumstances"

Login or register to post replies.

kathycmc's picture
Replies 4
Last reply 8/15/2013 - 12:13am

My daughter is stage IIIb.  Her last surgery was 1/31/13 to remove lymph nodes in the right side of her neck and she has been NED since.  She did complete 3 rounds of adjuvant biochemotherapy April 10th.  She had a PET scan at the end of April that was clear and a CT scan in July that was also clear.  Her oncologist (melanoma specialist) originally said she would alternate PET with CT scans every 3 months for 2 years but on her last appointment said she was changing the schedule to CT scan only every 6 months.  My daughter is 25 and this may have something to do with trying to decrease the amount of radiation over her lifetime.  I am hopeful this is good news but I wonder if decreasing the frequency of the scans is recommended.  Any thoughts?

Login or register to post replies.

brooke's picture
Replies 7
Last reply 8/14/2013 - 9:34am
Replies by: POW, Anonymous, hbecker, JerryfromFauq, Janner

There have been so many of you who have supported me through the scare of my husband's recent diagnosis. As you may know, he is a patient at Kaiser Permanente in Colorado and they are not melanoma specialits. 

He had a WLE with sentinel node biopsy in early August. The report came back showing a Breslow depth of 1mm with a satellite lesion which categorized him as stage IIIb.

I requested a copy of the pathology report and 'googled' the pathologists who read his biopsy. It appeared it was read by one general pathologist and signed off by a cytopathologist.

I immediately reqeusted a second opinion by a dermatopathologist and pushed the issue. Somewhat reluctantly, they send the slides for a second opinion. Two weeks later, I still hadn't heard. In the mean time we had seen the oncologist, enrolled in a clinical trial and prepared for a long road with melanoma.

Just late last week, we got the call from the surgeon who was shocked. The new path report, read by not only one, but 4 dermatopathologists, indicated that the 'satellite lesion' was a benign nevi (normal mole), and the new Breslow depth was actually 0.6mm.

As you can imagine, the shock and excitement I experienced were beyond belief!  Both the surgeon and the oncologist had never seen this before. Of course, they are asking for a third opinion now or as the oncologist called it, a tie breaker.

We are remaining cautiously optimistic that he may only be Stage I.

I wanted to post this to urge everyone to get a copy of your pathology reports, be sure a dermatopathologist has read it and if not, insist that it is. It could be life changing! Also, as everyone else mentions, go to a melanoma center as well.

Thank you again everyone who helped me through this trying time. I know that we are more fortunate than many and I will forever be grateful to this board for all the support. 

Login or register to post replies.

chalknpens's picture
Replies 4
Last reply 8/16/2013 - 11:58am

After much hesitation, I did go last week to have the Moh surgery on the squamous site on my chin. The little tiny spot required two Moh cuttings, and eventually a dozen sutures diagonally across the left front area of my chin. I had the sutures removed today, and will be seen again by the dermatologist in October. My jaw is now very bruised, and when asked at the post office by a friend, "What happened to you?" I told her that she ought to see the other guy. :-/

I am not perfect, but I am enough.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/23/2013 - 3:24pm
Replies by: casagrayson, natasha

Hello,

My OB/Gyn is trying to convince me using Mirena (hormonal IUD that has progesterone) because of very heavy periods. I am not sure about it because of my Stage 1 diagnosis. Have anyone used it with mm diagnosis?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 11
Last reply 8/14/2013 - 11:56pm
Replies by: bj63, Janner, DeniseK, POW, Anonymous, hbecker

I notice for whatever reason that some posts/questions get many many responses, while others get none or very little.  I can't figure out what the "pattern" is.  An interest-generating subject line?  Not posting anonymously? 

Login or register to post replies.

MattF's picture
Replies 5
Last reply 8/15/2013 - 1:03am

So I was dx with Stage ! in Aug 2012 right side of head near earlobe.

WLE and SNB neg. 3 month checks with ultrasound and bloodwork all good. Last one was Early June 2013 at MD Anderson.

End of June 2013 I feel what feels like a little "pea" at the base of my right ear (about 1 inch south of my initial melanoma and just left of the scar for the SNB.

I just keep an eye on it as i am moving out of tx and back to ca. 

By mid July it is olive sized...just starting to be visable through the skin....

Early Aug I get set up with Dr Chmielowski at UCLA Oncology Center....it is jumbo olive sized...firm, fixed, oval (sort of), about 1 inch across and you can kind of grip it with your hands but it will not move.

Set for an ultrasound then if the radiologist sees fit a guided Fine Needle Biopsy on Wed. at this point it is easly seen through the skin.

I don't want to think dooms day but just want some thoughts...i'm about as prepared as i can be...

I saw the oncologist (specioalizes in melanoma)...he got my history...did an exam..felt the lump for less than 20 sec and imeediately started calling in his staff to get me set up with other things...Derm and Biopsy. Then he used the phrase "this moderately concerning"

5 days later I saw the Derm at UCLA...he got history checked my skin then he felt the lump for about 15 sec and immediately called in his staff to check on the biopsy sched and what was going on...then he checked to see if it was through the skin enough for him to try and punch it to get his own biopsy.

The derm was great he looked me in the eye and said you have a list of priorities for your health. it is 10 things. #1 through #10 is to biopsy and treat that firm, fixed, oval, lump at your primary site.

Login or register to post replies.

Pages