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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sFELDMAN's picture
Replies 5
Last reply 1/9/2014 - 10:15am
Replies by: Pink, Tina D, BrianP, Mat, SABKLYN

Hi everyone. I am in  immediate need and hope you can help me. I am in immediate need of a PD 1 trial. Does anybody know where any of them are being held I live in Florida but am willing to go and travel anywhere.    I have previously been on Braf/Mek  16 months did well,  then Yervoy....slowed it down but need pD1.   Thanks to all my fellow warriors for your help.  G-D bless


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Bob B.'s picture
Replies 3
Last reply 1/9/2014 - 11:25am
Replies by: lsmith - MRF, Anonymous, BrianP

it's been awhile since I visited.   The site has changed.


How do I "search" a previous Topic?




Bob B.

The Only Good Legend is a Dead Legend.

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Anonymous's picture
Replies 7
Last reply 1/9/2014 - 12:14pm
Replies by: POW, Anonymous, Kim K, Momrn5
When Is a Completion ALND Necessary in the Presence of a Positive Sentinel Node?


Eur. J. Cancer 2013 Dec 10;[EPub Ahead of Print], A Suyoi, SK Bains, A Kothari, M Douek, O Agbaje, H Hamed, I Fentiman, S Pinder, AD Purushotham

Research · January 02, 2014


  • This retrospective study from the UK examined 155 patients undergoing completion ALND after positive sentinel lymph node biopsy. Patients with macrometastasis (> 2 mm) in the sentinel node had a 35% likelihood of further axillary disease on completion surgery vs a 10% likelihood in those with micrometastasis (< 2 mm).
  • The authors suggest that this adds further evidence supporting the avoidance of completion ALND in patients with micrometastases.

- Richard Bambury, MD



The management of the axilla in the presence of positive sentinel lymph node (SLN) remains controversial. Many centres forgo completion axillary lymph node dissection (cALND) in the presence of micrometastatic disease. The American College of Surgeons Oncology Group (ACOSOG) Z0011 trialists argue for extending this to macrometastasis. The aim of this study was to correlate tumour burden in SLNs with that in the residual lymph node basin to determine the likelihood of residual disease in patients with micro- and macrometastasis in the SLN.


Patients who underwent cALND following a positive SLN were analysed for histopathological features of the primary tumour and burden of axillary disease.


Of 155 patients, 115 (74%) had macrometastases and 40 (26%) micrometastases in the SLNs. Residual axillary disease was detected in 55/155 (35%) patients with macrometastases and 4/40 (10%) with micrometastases. Generally, with increasing size of metastasis in the SLN there was an increasing risk of further disease in residual lymph nodes. Logistic regression analysis showed increased odds ratios for further disease for all groups when compared with the <2 mm (micrometastasis) SLN group.


Patients may be advised to forgo cALND where the SLN contains isolated tumour cells or micrometastasis. Recommendations for proceeding to cALND can be based on the size of metastasis in the SLN, which relates to the risk of further disease in the residual axillary lymph nodes and subsequent regional recurrence.

European Journal of Cancer
When Is a Completion Axillary Lymph Node Dissection Necessary in the Presence of a Positive Sentinel Lymph Node?
Eur. J. Cancer 2013 Dec 10;[EPub Ahead of Print], A Suyoi, SK Bains, A Kothari, M Douek, O Agbaje, H Hamed, I Fentiman, S Pinder, AD Purushotham


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Anonymous's picture
Replies 2
Last reply 1/9/2014 - 3:11pm
Replies by: Anonymous, Janner

Can anyone speak to the topic of "compassionate use", perhaps using ipi as an example?  In other words, how does it work?  How is announced?  Is there still exclusionary criteria?  Is it confined to certain trial sites?  I'm not looking for predictions on when compassionate use for PD-1 will be available--rather I'm looking for info on what compassionate use might look like if and when it becomes available.  Thanks.

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Maureen038's picture
Replies 14
Last reply 1/9/2014 - 5:38pm

My husband just had scans from the BMS CA209-004 study of 3mg/kg of yervoy and 1 mg/kg of nivolumbab. There is nothing new and his tumors have shrunk almost 50 percent!!! We are so thrilled, but we are still dealing with the side effect of hemolytic anemia after the third infusion. He has been on steroids for almost a month and while it's been tapered down from 100mg to 30 mg he can't get on the maintaince schedule of nivolumbab until his steroids are stopped. Yesterday, we were at UPMC with Dr. kirkwood and his glucose level went very high so they had to give him insulin twice. We are hoping to get all of this under control soon and he needs to see an endricologist now.

i wanted to post this to give people hope. This is the third trial he has been on, so please don't give up. He had HD interferon and he had the ACT at NIH this summer. The ACT stopped the alarmingly quick growth of lung mets, but unfortunately a few mets kept growing a few mm. Each of the trials have taken a toll on his body though so he is eating very healthy foods, exercising and enjoying each day! You truly learn what is important in life. We wish everyone here the best!!


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Pink's picture
Replies 4
Last reply 1/9/2014 - 9:10pm
Replies by: Pink, Bubbles, UrsulaZ, POW

Went to Moffitt yesterday met the neuro and radiologist new MRI shows 4small lesions all on the right side.of my brain   I got fitted for the lovely plastic mask and start treatment on ties, we'd, Thursday and Friday. The following week start Ipi, here is hoping they all work. The trek of 1 45 min each way is tiring but I feel I am getting the best care there.

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Yvonne.D's picture
Replies 4
Last reply 1/10/2014 - 12:32am
Replies by: Yvonne.D, Janner

I have just been diagnosed with Melanoma and looking for some help with my report. I need to stay positive, strong and informed for my 5 month old, 6 1\2 year old and my husband and hoping someone can help. If anyone can help me explain my report for me. Also if anyone has been through what is close to my diagnosis I would greatly appreciate your comments or experiences and what treatments you have had. Everyones cases seem to be different in some way so even any thoughts would be wonderful.

Here goes. Biopsy Report.

Surgicial incision with 1 cm MA of skin. Left thigh. Superficial Spreading Malignant Melanoma. Level 2 invasion, vertical height 0.47- No ulceration. Mitotic index is one mitosis per 1 mm squared.

On November 18th I had an appointment with the Dermatologist who looked at my mole. She then made an appointment on the 27th to have a biopsy. On the 27th she did a shave biopsy. Apparently she was ruling out 3 possibilities. She said make an appointment to come back in for the results which was going to be for tomorrow however my family doctor called to tell me last thursday to tell me that it was Melanoma. I called my dermatologist right after that tryin to get in earlier to see them for the results which was now really just for the specifics on how bad it was as my family doctor was only able to tell me it was superficial. So I was a mess that day thinking my children and husband were going to be without me very soon as I have only ever heard that melanoma is a death sentence and was not educated at all about melanoma. I don't think I have read as much as I did over the past 5 days about other peoples stories and information about it. Thank you to everyone who posts. I did get in yesterday for the results because they had a cancellation. I have an appointment on December 31st to have a surgery. I have to call the nurse back tomorrow just to discuss a few more details about the report as I was just listening as she went over specifics and didn't know the right questions to ask or more so couldn't. Now I have a grip of myself enough to talk and be the best informed and educated patient I can be hopefully with a little help for you guys.

I do suspect that I have more on my body as well. The one they diagnosed was brushed aside saying it looked fine by my family doctor as well as by my OB after I asked what they thought about it. I cannot say enough to other people to go with your gut and get that referral if you suspect it is not normal. They are both wonderful doctors and could not say a bad thing about them, after all they are not a dermatologist.
I have an appointment in the New Year to do a full body with my dermatologist.

I am in Southern Ontario and have a few cancer hospitals from a 30 min drive as far as a 1hr 30min drive so I am feeling positive that if need be I can get the care I need very close.

I was going through web pages trying to figure out my diagnosis and think I may be a T2A as of right now please correct me if wrong. Once I have my surgery that may change as the nurse said they didnt get it all when hey shaved it and could be bigger.

Your thoughts, suggestions, anything would be greatly appreciated.


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SaveMySister's picture
Replies 13
Last reply 1/10/2014 - 8:15am

Hi all,

I haven't posted since shortly after my sister passed away less than one month after being diagnosed with stage 4 melanoma last July. Being that she had no skin abnormalities, I am wondering if we all missed any other warning signs.  If you get a melanoma lesion on your lung, would it cause breathing difficulty? She had a small 'mass' on her lung that they called a cyst, which was detected about 1-1/2 months before her diagnosis. She had had breathing problems which were assumed to be allergy related back in 2011, which never really got under control completely.  (They removed polyps from her sinuses but kept putting her on steroids.)  She was tired a lot and became a caffeine drinker.

Her melanoma was discovered when a large tumor was removed from her lymph node. An MRI of her brain shortly thereafter revealed 11 lesions. I guess what I am trying to figure out, is that are there any warning signs that I can look for to try to catch this very scary form of melanoma that shows up internally? I don't want to spend my 50's and 60's being paranoid that I will be dealt the same fate as my sister. I am getting my skin checked every 6 months, but in my case that may not be enough.


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Anonymous's picture
Replies 4
Last reply 1/10/2014 - 8:26am
Replies by: Tina D, Anonymous, JerryfromFauq, Janner

I am new to this site. I have had what felt like an itchy dry patch on my back for what seems like years. The other day I asked my husband to look at it and he said I should get it checked out. He took a picture of it and it looks very much like the spreading melanoma on this site. It is about a pencil eraser size wide and very slightly thick. There is also another one next to it that looks similar.

I have an appointment on Wednesday to get it checked out. My question is, because it is on my back I have no idea how long it has been there. Can a melanoma stay in situ for months or years before getting more advanced? I am concerned.


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Dick_K's picture
Replies 8
Last reply 1/10/2014 - 10:51am

For those of you familiar with me, you know I have been on Zelboraf for quite some time and that over the past fifteen months or so, I have had issues with my bilirubin being high.  At my six week NYU check-up this week, the bilirubin count came back quite low.

When I came home from NYU the mailman had delivered the news from my recent colonoscopy  – no problem, repeat in five years.

Today I met with my urologist about last week’s prostate biopsy (third biopsy since diagnosis) – prostate cancer – NED!

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bodrum's picture
Replies 19
Last reply 1/10/2014 - 11:18am

In september of 2013 I noticed a change in the color of a birthmark/mole. I sent a picture of it to an oncologist family member who told me that it was probably nothing since it was a birthmark. 

In December, I jokingly showed the color change to my dad who is an orthopedic surgeon... He immediately took me to the hospital and had the birthmark removed.

The surgeon who was removing the mole looked at it and said that it's probably nothing but will check it just to be sure.

Two weeks later the test results came back. They said that it was malignant melanoma. A few days later they did the wide excision and sentinal lymph node removal. One of the lymph nodes came back positive...

Two days later they did the pet scan which was clear.

At first I refused the full lymph node removal since I really don't understand why I should be living with lymphedema when I was just fine before all of this. But I will have the surgery this tuesday...

On new years eve my brother told me that I will probably die within 5 years. (he is an oncologist) He also told me to stop taking vitamins... ( I don't get why)

My dad says there were few cancer cells in the mole but that it had only spread to the lymph node only because the cancer cells were at the hair follicle. He also stated that the lymp node only had micro metastases. 

All these terms seem so foreign to me.  I look at statistics and they all mean nothing at this point. I don't understand what it all means. 

I am 33, I just started my own business this year. I was planning to get married and have kids within a year...  All that is gone now. 

It's time to make new plans... I just wished someone told me the truth about what is awaiting me...




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Anonymous's picture
Replies 15
Last reply 1/10/2014 - 1:18pm
Replies by: jahendry12, Anonymous, JoshF

Kaufman is leaving Chicago? Where is he going?   Does Rush have another melanoma specialist?

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Anonymous's picture
Replies 10
Last reply 1/10/2014 - 4:39pm

Hi Everyone,

Has anyone been able to work full time while on PD1? I have had one infusion so far (two weeks ago).  I was up all night Monday with chills and Tuesday I felt like I was recovering from the flu (flu hangover).  Just curious if I will be able to work full time with more infusions coming (hopefully 11 more).

Thanks.  Good luck to youi.


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Hey Friends,

An update on my husband Scott's status:
Scott received 6 doses of Nivolumab, but only 2 of 4 scheduled doses of
Ipilimumab while on the BMS Nivo/Ipi trial at UVA. (The last dose
administered on October 30th, 2013). He was unable to receive the final
two, as his liver AST and ALT levels were vascillating between Grade
2-Grade 4 adverse effect reaction. Corticosteroids (prednisone) were
begun in mid-November 2013 (after a very odd 4-day
hospital-stay-requiring and as-yet-still-undetermined high fever
episode in Los Angeles). We saw results and began tapering (with the
hopes of rejoining the trial protocol as soon as levels equalized).

Scott's scans of December 27th revealed yet another 50% reduction in
his lung tumor size in the two more formidable locations...the largest
of which is now a mere 4.5mm, the smaller 2.5mm! One has resolved
nearly completely...and a few others seem "dead in the water,"
unchanged in nearly a year!

However, his bi-weekly lab work this week revealed his liver levels (at
our tapered down to 60mg a day dose) ascended DRAMATICALLY to nearly
14x the norm. Our fantastic oncologist, Dr. Grosh at UVA immediately
has bounced us back to a full 200mg daily, and Scott consulted (at Dr.
Grosh's behest) today with liver specialist Dr. Caldwell at UVA. We're
looking forward to seeing a perceptible drop in AST & ALT tomorrow when
we do labs. Our fondest hope is to rejoin the BMS trial with two years
of "maintenance" Nivolumab once his liver is "back to normal," as it
clearly is working so well for Scott and so many others.

We wanted to bring you all up-to-speed---as well as to see if you have
any insight/advice into this profoundly stubborn liver reaction to the
sequential Nivo/Ipi combination.

WIshing us all health and happiness and hope-
Cheryl Lage
Wife of Scott, Stage IV since Feb 2012
(Diagnosed in 2005 at 2a, 4 recurrences---surgeries, radiation, 27 bags of IL-2, two clinical trials and scans beyond counting and he's here and FIGHTING and LIVING!)

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Anonymous's picture
Replies 12
Last reply 1/10/2014 - 7:02pm

Anyone else experienced headaches with ipi? I'm going on about 2 weeks now of pretty constant headaches. Started pretty mild but lately I call them more migraine like. Thankfully MRI on Thursday came back clear. Scheduled for my 4th and final ipi infusion tomorrow. Just hoping this headache doesn't get worse with another infusion. 

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