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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Anonymous's picture
Anonymous
Replies 5
Last reply 1/2/2016 - 2:32pm
Replies by: mrsaxde, Eileensulliv, Jubes, Bubbles, Anonymous

I find that adding these posts are good for hope and to help others learn about the potential responses, timing, rates and so forth.

Here's my stats:  Dx stage 2 on 6/3/14 (mel on toe).  Dx Stage 3 on/about July of 2014 (SLNB - surgery to remove part of toe).  Did not do interferon - close follow up/scans every 3 months.

Dx stage 4 on 12/23/14 (severe discomfort in back, chest and shoulder).  Scan revealed mets throughout chest bone structure including breast plate, ribs, back and spots on left leg.  Mets on liver.  

Treatments:

Xgeva:  Jan to present

Ipi:  Jan-April 2015.  Limited response, but growth of mets - Significantly reduced pain related to bone mets. 

Keytruda:  April - Present.  

Scan in July 2015:  Stopped growth.  Significant sclreosis of bones and potential new bone growth.  No pain.  Still some uptake of tracer in bones.  Liver mets appeared slightly larger but difficult to tell.

Scan in October 2015:  Still not significant growth.  Major sclerosis and photopenia in bones - could be reaction of Keytruda/Xgeva killing mets and building bones back up.  Stil some tracer uptake w/ bones. Suggestive of partial response.  Liver mets appeared slightly larger but could be inflamed. 

At this point, Doc insisted on continued treatment.  

Scan in December 2015:  Same results for bones, but no more uptake.  All tracer uptake at normal levels.  No uptake on liver - no mets noted.  Suggests complete response to therapy.  NED.

As of right now, I'm NED and my wife and I are thrilled.  We went through a long process to get here and were very fearful as each scan passed w/o reduction to the liver mets that we would never get here.  Liver mets are noted to be difficult to eliminate and most keytruda responders seem to come quickly.  But, we proved to be quite different.  

It's a good way to start 2016.  

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Wifeof1's picture
Replies 1
Last reply 1/2/2016 - 10:37am
Replies by: Janner

Hi, everyone. I'm so glad I found this forum.

My husband is 36 with a rare autoimmune disease called CVIC, we have 3 young children, and we recently moved across country where we know nobody. We moved here in summer and DH (dear husband) had a mole on his lower back near the spine that started to protrude. Within a month or two it was about the diameter of a nickel, bluish-grey, and started bleeding. He had it biopsied beginning of November (took us a while to get him in with needing referrals, etc) and within a few days they called us back. Melanoma, aggressively deep, 3.9 mm, ulcerated, and high mitotic rate. 

It took another 3 weeks to see the surgical oncologist at what is supposed to be the top melanoma center on the west coast with one of the best doctors (he is great, but we are used to a more personalized, small town standard of care where the actual doctor calls back with results in a timely manner). 

Doc decided due to presentation at initial biopsy, PET scan was to be done before SLNB. I had to call the office for results and they called him back. PET showed uptake in lung, chest CT scan was schedule for a few days later. Again, we had to call for results and CT was inconclusive but nodule was in upper right quadrant and didn't look like  melanoma.

Primary melanoma was on the trunk in a spot where the oncologist said it could spread to either armpit or groin lymph nodes.

SLNB was on the 18th. Once again, were told results would be by Christmas Eve. DIdn't hear back. I called the 28th as soon as offices were open again and they called DH back with the news that BOTH armpit and groin lymph nodes that had been removed/biopsied were positive for melanoma. He didn't ask the right questions, though, and they didn't give many answers. This was Monday. It is now Saturday and we go in this coming Monday (the 4th) for follow up with the doctor where I'm sure we will know more. Nodes weren't palpable and didn't show any evidence of disease upon extraction, so that is good news - but I am wondering if this will be considered stage 3 or 4 because it has spread to two different spots. The chest CT scan will be repeated, too.

Has anyone had experience like this where primary was on trunk and it initially spread to two different areas? And it is now beginning of January - two months after initial diagnosis - and we still don't know what stage or have many other details. Is this common for a big city melanoma specialist? It's just so frustrating. The emotional struggle is taking its toll and like I said, we have no family within 3000 miles so it's been tough with the little ones.

Thanks in advance for your help. I'm sorry everyone is going through this, yet I'm glad there is hope with new treatments and a forum like this where we can share experiences. 

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marceline_queen's picture
Replies 5
Last reply 1/1/2016 - 6:58pm
Replies by: jae p, JoanieM, Anonymous, marceline_queen, stars

Hi everybody,

I'm a law student in my mid 20s, and in the midst of finals I was taking a bath and noticed the mole on my leg was bleeding slightly. I'd had it for years and always meant to get it looked at, but it seemed impossible to me that it would actually be cancerous. But I guess with the added stress of my first semester of school, it started looking pretty suspect to me. I scheduled a dermatology appointment for the week after.

This was a few weeks ago - since then, I have been diagnosed with Stage IB and I'm having surgery next week to excise the skin around the mole (it was bioposied at that first appointment) and to have a sentinel lymph node biopsy.

 

Honestly, I'm still in shock. My parents and boyfriend told me it was good I was getting it checked, but surely it wouldn't be anything- and it was! It was thin, but the mitosis rate is worringly high, thus the lymph node check.

There's only a ~10-20% chance that it's spread to my lymph nodes, but less than a month ago this wasn't a thought in my mind. I can't believe I got a cancer diagnosis. I'm trying to stay positive and figure out how/if to share this news with the people in my life, but it's incredibly surreal.

I know most of the people here probably have much more dire situations and I don't mean to dramatize what I'm going through; it's hard to keep a sense of perspective with things like this. And it's strange knowing that, even if it hasn't spread, I'll be getting skin checks every few months for the next couple years, and always worrying- at least a little. 

Anyway, I just wanted to introduce myself, and I'll report back with my results post surgery. Hope everyone is finding comfort and support this holiday season. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/1/2016 - 12:10am
Replies by: Anonymous, jennunicorn, kathycmc, mkirkland

I was diagnosed with Stage 3 nodular melanoma in April 2015. I had first sugery in May of 2015 and second surgery to remove all lymoh nodes in July 2015. My oncologist told me that even if I do the treatments, I still have a 60% chance of it coming back, so I chose to do nothing. Here is it December 2015 and I now have in-transit metatasess around the original tumor site. I go back to oncologist on January 7 to discuss treatments. I am sure that she will offer me the same treatments as before which are either Interferon, Peg Interferon, or Biochemo. I have read so many things about all of them and I have NO IDEA what I should do. Can anyone tell me if they have had to make this decision and what decision you made? How it went for you and if it helped at all. I'm to the point I just want to ask her to take my whole darned leg instead of having to do these treatments. Any help would be great. 

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Anonymous's picture
Replies 4
Last reply 12/31/2015 - 7:15pm
Replies by: Bubbles, LASS

My husband was diagnosed with melanoma in 2010. His melanoma was found in a cyst on his head. He had surgery, a skin graft, sentinal node was negative. He had a satelitte met off from the primary. He did a year of interferon and had radiation on his scalp. He was NED for five years. In September of this year, 2015, they found multiple mets in his liver. He is BRAF negative. He is 47 years old and otherwise very healthy. He got into a clinical trial for yervoy and opdivo. After 3 treatments (the day before the 4th treatment was scheduled) he had a scan that showed the tumors had not responded to the treatment. The tumors were growing rapidly. They had spread throughout the liver. Numerous mets in both lobes, the majority being the left lobe. Mets had also spread to the mesentery membrane. 2 small mets in lungs. His LDH levels were 2443. His oncologist admitted him to the hospital to get taxol/carbo in him right away in hopes to slow the rapid growth. He has had one treatment and will have another on Jan. 8th. We saw his oncologist yesterday (dec. 30th) the swelling in his liver seems to have gone down. He feels tired, discomfort in abdomen, of course. He has lost a little over 20 pounds. He is very strong, works still partly from home. His oncologist referred us to Dr. Salama, a high risk melanoma specialist at Duke. We live in SW Virginia. Does anyone have any opinions about Duke's melanoma center or any other advice to give? Thank you for your support. Prayers to all of you who face this terrible disease.

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jennunicorn's picture
Replies 8
Last reply 12/31/2015 - 5:45pm

I just wanted to write a short update for anyone else who is on or will be on the Yervoy 10mg/kg dose and might be anxious about side effects. 

I had my first infusion on December 15, so it has been almost 2 weeks now. The only side effects I have delt with are fatigue, dry eyes, and eczema flare ups. I have had eczema for a long time and I get it on my fingers. Every morning since the infusion my fingers have been broken out and itchy, I have cream for it so I use that like I normally would and they are fine within an hour or so. It doesn't bother me the rest of the day.

Being tired a lot kind of sucks, but it is definitely manageable. It has gotten better since the first week, I'm not as exhausted throughout the day.

Dry eyes is something I didn't really know about beforehand. My oncologist said it is something she hears frequently from patients on Yervoy. She advised me to get moisturizing eye drops and use them when needed. Those definitely help.

Overall, it has been fairly easy so far. The next infusion is January 5th, keeping my fingers crossed for continuing manageable side effects.

Best wishes to all,

Jenn

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bonusfries's picture
Replies 4
Last reply 12/31/2015 - 5:29pm

I had progressed while on BRAF + MEK (2cm adrenal mets), and since the new growth was limited and small, we did the 4 infusion cycle of ipi starting in the beginning of August.

An interview I had read from Celeste's blog said most people who progress on BRAF don't respond to ipi, so I did not have high hopes for this treatment.

My last infusion was on October 9th. While my side effects were rather impactful, my blood work and overall health were good throughout so we waited as long as possible for follow-up scans.

My follow-up CT shows no traces of the mets, nor did it find anything new! The side effects were well worth that radiology report.

Clean scans for all in 2016!

Jeff

Just do it

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fleurdelis82's picture
Replies 2
Last reply 12/31/2015 - 4:51pm
Replies by: fleurdelis82, Janner

I recently had three moles biopsied, and the dermatologist called to let me know that everything is benign and no further treatment is necessary. However, the biopsy report got me worried. Please help me understand: 1. What it means; and 2. If there is any danger in case the moles come back. I am especially concerned about mole A as it already seems to be darkening in the biopsy site. Also, even though it says clear margins, it seems like a tiny spec of brown pigment have been left behind. I would like to know, in case moles A and B recur, if they need to be re-excised, or if anything else may be necessary.

FINAL DIAGNOSIS
A. Skin, right navel: junctional melanocytic nevus with moderate dysplasia and melanopgahes. The margins are clear in the planes of section examined. Note: stain for melanin A is positive.
B. Skin, right lower abdomen: junctional melanocytic nevus with moderate dysplasia. The margins are clear in the planes of section examined.
C. Skin, right thigh: solar lentigo.

Also, moles A and B looked very similar and were located in the same area on my stomach. I have two smaller moles that look very similar to those. So I am assuming those smaller moles may also be atypical? Do I need to have them excised as well? Will it reduce my melanoma risk?

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Lindsayblueyes's picture
Replies 5
Last reply 12/31/2015 - 10:46am
Replies by: Anonymous, SoCalDave, Lindsayblueyes, kylez, Janner

Going on a 10-day Caribbean cruise next month. Any suggestions for the best type of sunscreen to use? Any ingredients better than others? Thanks.

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Replies by: CHRISNYC, kylez, Anonymous

So my husband had to change healthcare plans , and kicks in on jan 1 with orginal medcare, part F and prescription part D.  He is only 64 but disabled from a car accident 14 years ago.  When we first started his medication, the specialty pharmacy hooked us up wiht the Patient Access Network - she was so kind, they took care of everything.  Our allotment of $ is coming to a close, and won't cover next months medicine.

Its kind of scary, we need to switch pharmacies and tomorrow I will call the Patient Access Network and ask them if we can reapply.  I have a good job, but without support our meager saviings will quickly disappear.  The cost of the drugs is freaking my husband out.......I will be on the phone tomorrow, I just went onto the Novartis site and another co-pay support site.  Charles is on the Braf combo MEK and Tafinlar.........he is stuborn and proud and now sick with worry about using all of our $, making initial noises of if we can't afford it he won't take it anymore.  I know that he doesn't mean it, but the stress that is starting to build around money is a dark clound on us.................

Can anyone share of any sites or resources that you used to assist you to pay for your medication?  We file jointly, we might have to split tax returns........do crazy financial wizardry just to get by.  Any stories or what has been working for you would be such a relief to recieve. I see so many Go Fund Me pages....that can't be us, there has to be other resources.

Thank you, 

Rita

Rita

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Jennab0525's picture
Replies 8
Last reply 12/30/2015 - 4:25pm

Hello everyone! I'm newly diagnosed in October and have been visiting this site daily since then. You have all been so helpful. I am posting today to find if there is any one out there with a similar situation to mine and hear how they are doing.

My back story is this...in Dec of 2014 I went to the doctor with a mole on my upper right shoulder blade that had been changing into a red bump. Doctor thought it could possibly be Basel Cell or Sebehhoric keratosis (sp?). He chose to freeze it off and said if it comes back it's cancer and he will remove it and if not the it's a Sebehhoric Ketatosis. Next few months it continued to look like a red flat scar so I assumed it was healing, not cancer. This summer it started to raise up into a large red bump (never bled, didn't hurt). Since it was ugly when wearing tank tops I scheduled an appt with my local doctor to remove it. Two days after removal it came back melanoma. My initial diagnosis was Stage IIB (Breslow IV, lymphatic invasion present, 3.5mm, ulcerated, mioticic rate greater than 1).

PET Scan on 10/28 came back clear (yeah!!),  then SLNB and WLE on 10/30 came back margins clear (yeah!!) BUT they found 2 isolated tumor cells in my SN (second node was clear; they removed 2 nodes total). The cells were extremely microscopic, had not even had a chance to cluster or mat. All docs (surgeon, dermatologist and oncologist) felt this was good! Unfortunately, this did elevate me to a IIIB.

First oncologist told us I had a 40% chance of recurrence and suggested no CLND but interferon. I had done my research on interferon and did not want to go that route as I felt it was overkill with my node involvement. We went for a second opinion. Second oncologist (melanoma specialist 20+ years experience) said no CLND (less than 5% chance it would be in remaining nodes) and felt interferons risks far outweighed the benefits for someone like me. He said I am in a grey area. He feels my original tumor may not have been ulcerated and may have appeared that way because of the freezing thus giving me a better prognosis (dermatologist feels that way too). Also in breast cancer patients a node with my cancer involvement would be considered negative but they don't have that proof yet (that will come out in the MLST-II trial in 2022) also giving me a better prognosis. Concerning factors for him were the depth of the tumor. I should also mention that the second pathology report after WLE said my miotic rate was 9! The oncologist didn't really care too much about that but again was more concerned about my tumor depth. He felt my chance of recurrence was more like 20%. So we opted for the watch and wait approach which I'm comfortable with. I have another CT scan and brain MRI scheduled 12/28 and will see the ocologist for the results the same day.

my questions for all of you are these. Given my grey area factors do I have a good prognosis? Has anyone had their initial tumor froze off therefore presenting as ulceration? In my heart I feel I am more like a stage IIB or IIA (whichever way you want to look at the ulceration) even though clinically I am considered a stage IIIB. What is everyone's thoughts on all this!?

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EJJ's picture
Replies 3
Last reply 12/30/2015 - 11:30am
Replies by: davekarrie, EJJ

I am a third generation melanoma survivor in my family. Dx in 06 returned 08. My Derm. I have been seeing since 06 has retired and I am now looking for a new Derm. Those of you like me know just any old Derm won't do. Does anyone have advice on Derms. At Mayo in Rochester MN?

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Donnasue0611's picture
Replies 3
Last reply 12/30/2015 - 12:12am
Replies by: Janner, Donnasue0611

Hey guys. I'm new here. My son has had several severely atypicals removed (he's 15)...and we had another removed yesterday. I understand his. I know what to look for now and I even have pointed out several to my Derm who agreed that they needed to go. 

 

I had a mole removed that bothered me. I picked at it several times (I know bad idea)...and this last time it grew back darker and stung a bit. It also looked very few around it periodically throughout the day. My Derm said it looked okay but he always takes off what I want. It was perfectly round but was elevated. It came back as "severely atypical melanocytic hyperplasia" which my Derm says isn't melanoma or melanoma in situ...but the step before it. 

 

Many questions. What do I look for in these lesions to insure that I don't have more?  How close to melanoma is it?  Do all melanomas cause some sort of discomfort???  Or  not?

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Gwenmorgan's picture
Replies 5
Last reply 12/29/2015 - 12:04pm

So, I made it through 2 treatments of ipi/nivo and then hit the ER for a night and the hospital for a 6 day IV treatment.  Paperwork says Colitis and I am on big doses of prednisone and working on the step down now.

I am a difficult patient and a control freak so my stay was memorable for many I am sure - I pulled my IV and ran for it the first night in ER after the CT and chest Xray- why stay in ER when you can go home and wait for results- and get a bath??  Plus I have children that needed to have Christmas party stuff done for school - can't do what you need in the hospital for the holidays...Anyway, I had to convinve myself it wasn't prison and the hospital did let me go outside with an escort and I napped in the super warm December sunshine one afternoon - I had secretly escaped earlier with my IV squid and the help of a friend to make sure I wanted to ask for the freedom first...it has to be fun for me too:)

The children came to visit and tortured the nursing staff with the call button - they were trying to turn the tv on...it was quite a surprise for the nurse to see 3 kids in my bed snuggled up coloring pictures but they were very sweet to everyone.

And of course, there is still the obsession with the bugs that I think are crawling in my skin that cannot be seen - that made for a memorable night of some poor nurse searching the bed with tweezers collecting dirt and sending it to the lab.  Maybe it is the brain mets, maybe the ipi?

BEST news is the news from the Chest CT is that both lung mets are no longer measurable.  There are some swollen nodules that will be monitored but it was nice to see my personal tumor chart drop from 11 mets (brain and lungs) to 9 in the brain - some of which have been hit with cyberknife but are still hanging out.

A few weeks more for brain MRI.  I am nervous.  I want to continue the treatment.  I told Dr. Gibney and anyone else who would listen that I would rather have diarhhea forever than cancer just keep me in the program...we will have to see what they decide.  If it looks good I think he will let me stay on Nivo.  If MRI shows progression then we need some new options.  He mentioned that there is a new brain met trial starting at Lombardi and possibly WBR - but I seem to feel that is palliative only and I want something more aggressive.

I want the children to be old enough to remember what I look like, smell like, what I fussed at them about.  I want them to hear my voice as their conscious when they are older and remember their mom.  I don't want them to remember only the cancer.  I am hopeful for days when I forget that it is even here.

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BrianP's picture
Replies 12
Last reply 12/29/2015 - 11:23am

I know several of you are Facebook friends with Artie or maybe had other channels of communication.  I would like to request if any of you see information regarding obituary or memorial services if you could please post here.  I would very much like to know if and when his family has made any "in lieu of flowers" request and I'd also like to know his parents' address so I might make a donation to MRF in his memory.  I'm hesitate to post someones personal address on this site but if you could message it to me that would be great.  I'm not sure if his parents knew how much he was loved by this site but I think it would be a wonderful gesture if there was a fundraising effort in his honor.  Right now on the MRF donation page I don't see a way to let the family know the donation would be from Artie's MPIP family but maybe someone on the MRF staff can help us with that. 

Thanks,

Brian

 

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