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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We live in Wales, United Kingdom, my husband is Stage IV and 8 weeks ago finished 8 rounds of dacarbazine with the trial drug E7080, he is currently on a maintanance programme with the E7080.

In the UK we only normally give 6 rounds of Dacarbazine but as this is an American and Japanese trial he has had 8 rounds, he tollerated everything really well for the past week has had debilitating fatigue and pins and needles in his feet.  he is being monitored closely and is having a weeks break from the E7080. 

He has had really good results and is now stable but this fatigue and the pins and needles is really getting him down.

I wondered as we in the Uk are not aware of the side effects of 8 doses of dacarbazine has anyone out there had any similar symptoms, if so any help or advise would be appreciated!

Many thanks x


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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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susanr's picture
Replies 4
Last reply 4/27/2012 - 8:00am
Replies by: susanr, hope4cure1, triciad

Hello everyone,

My brother just started Abraxane today.  He is currently Stage IV as of 2/12.  Had yervoy 12/11. after clear PET.  In Feb 2012 his PET lite up like a Christmas tree. Lung nodules, re-occuring Left pelvic mass---had radiation there but nothing, nodules in abdominal cavity along with a spot on right femur.  He has been on Temodor since 2/12 but after last PET 2 weeks ago they decided on Abraxane since no improvement and some enlargement.  Anyone been on Abraxane and Temodor combo.  Hope to hear some of you had good results.  It seems he has had no good news since being dx. 2  1/2 yrs ago. 

Only good thing we have had was that clear PET in Nov 2011 prior to the yervoy.  Also, He has a mass behind his left knee which has grown and now going to have radiation to help shrink so he can walk better.  He has had quite a few surgerys---skin graft on his foot where primary started.

I am probably not making much sense so If you need more info let me know in order to give me some help/advice.  i am in the medical field and unfortunately know how nasty this melanoma is and I am trying to be optimistic but it is very hard when you know the response rates are not great on how well melanoma responds to chemo.  This is my first time posting but have reviewed website for awhile and have to say everyone is great and amazing how supportive. 

Thank you Everyone!!!!!


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OB Mike's picture
Replies 3
Last reply 4/26/2012 - 9:19pm

I am finishing my 4th dose of ipi soon and my abdominal tumor is still growing causing me shortness of breath and weight loss. Does anyone have information for my onc about raditaion therapy?

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himynameiskevin's picture
Replies 6
Last reply 4/26/2012 - 8:47pm

I've got a few random questions,  if any one has any answers or insights, I would love to hear. Help put my waiting/worried mind at rest.

1. I finished my last dose of Yervoy on Dec 20th and so far it doesn't look like I am going to benefit from it. The last time I talked to my doctor, he mentioned that he wouldn't give up on it just yet, and explained that sometimes it take a while to "work". Has anyone experienced any kind of delayed or late response?

2. As of about 5 days ago, I am experiencing what seems like mild paralysis in my left hand/wrist. No pain/numbness/tingling, it's just not quick to respond. Like my fingers don't wiggle or move as usual. It's a bit clumsy I guess. I read this could be an uncommon side effect that could arrive weeks/months after the last dose. Every time I went in for a dose of yervoy a few of the numerous questions asked if I've been dropping things or have had trouble gripping. Has anyone experienced this?

3. After finding out I have three brain mets last Friday, I understand that this paralysis feeling could be something neurological, maybe there's one of the lesions is causing pressure and problems? If that's the case, has anyone experienced something similar? If that what's causing the problems and the stereotactic radiation successfully takes these guys out this week, could i expect my hand to come back to normal?


That's it for now. Thanks in advance. For anyone wondering, I have an appointment with the radiation oncologist on Tuesday to see about zapping these guys out. As for the results of my ctscan, I still don't know. I dropped off the disc last Tuesday, called twice but have yet to here back, I'm not sure if that's a good thing or bad thing. My doctor is a great guy and never seems to waste a second informing me, so I'm sure there's an explanation. Should be getting a lot of news this week, I'm a bit worried, but doing my best to stay optimistic and hoping for the best. -Kevin

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triciad's picture
Replies 3
Last reply 4/26/2012 - 9:36am
Replies by: triciad, vivian, lhaley

I am really confused and need any help or guidance you can offer!

In July, I found an intransit close to my original tumor (buttocks).  I went to my dermatologist who tried to excise, but it was too deep.  She sent me directly to surgeon.  The piece she got out was biopsied and came back melanoma.  I had surgery and did 6 weeks of radiation.

A couple of weeks ago, I found a similar bump.  I went to my dermatologist who told me she spoke with my oncologist and he said not to biopsy, go and get PET.  I got the PET.  My oncologist's PA called me the next morning to report the PET showed absolutely nothing...probably fatty tissue.  I was in shock because it was right between my 2 previous melanomas and felt exactly like the one in July.  I thought something wasn't right, but the temporary elation was wonderful. 

I just happened to have my regular checkup with my oncologist that afternoon, so I still went to see him.  He looked at it and said, "It's definitely melanoma and set up surgery with the surgeon".  So I did, and I had the surgery.  Path came back...melanoma.

Naturally, I'm bewildered.  How could the PET not show anything (path report says specimen was 3 x 1.5 x 1.3 cm)?  In addition, if I didn't have my regular check up, I would be walking around with this melanoma growing and growing inside of me!

I'm wondering, what would you do?  Do I say something to my oncologist on Monday about the "all clear message"?  I used to have such faith in the PET scan findings, but now, I'm not so sure.  Also, I don't know if it's time to get a new doctor? 

PLEASE give me your advice...what would you do?

Thank you so much for all of your help.  I've said it before and I'll say it's my MPIP family who I trust!


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Hi again,
Yesterday Dr.Halpern froze everything on my scalp, face, neck and in my ear. Tonight I start applying Aldera again. He said that there is a risk in the ear because we could be damaging the cartlidge, but that the benefits outweigh the risks. When I asked what happens if the cartlidge is damaged and he said we'd deal w/it, I didn't have the energy or desire to question him further. Not being an informed patient is not my style. I'll ask next time.
He confirmed that the mel on my "prior-irradiated" scalp are great size for new cohort of BMS PD1 trial--too bad they only want virgin skin.
He is leaving one met under my chin alone--maybe it will grow a bit, especially that my 4 th ipi infusion, if I get it, is on hold.
Could be way worse as all u warriors have shown me, so I'm working on putting more gratitude in my attitude.
Have a good day,

Don't Stop Believing

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yoopergirl's picture
Replies 10
Last reply 4/26/2012 - 5:49am

We traveled to Madison Wi to see my Oncologist, had blood work and then saw the doctor. He just asked how I was doing and then took a look at my arm and said that my lumps were getting bigger but nothing can be done now, he ordered a ct scan for June 4th to see if the Yervoy did any good even with just 3 treatments. I am having alot of itching so I asked about that and was told just keep using the cream that I get over the counter, I don't know was I expecting more from that visit? BTW my blood work was all good. So now it is a waiting game again. I should have asked him why they don't remove the tumors on my arm, so many questions and not getting all the answers. He is a specialist in Melanoma so I guess I just have to have faith in him. 

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rlaraia's picture
Replies 4
Last reply 4/25/2012 - 11:24pm

I received Michelle's pathology report and the lesion that was removed last week was benign.  The report states it was a Junctional Melanocytic Nevus with nests of typical melanocytes.


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kwahlbin's picture
Replies 4
Last reply 4/25/2012 - 9:35pm

As you may have noticed, today we have upgraded the bulletin board with a new look and additional functions.  Unfortunately, we were not able to move over the posts from the previous bulletin board system to the new bulletin board.  As such, all posts from the older bulletin board have been archived and will remain on the site for reference purposes.

To view old bulletin board posts, visit the archived bulletin board.  Once you arrive at the archived bulletin board, click on the tab titled “Archive,” and you will be able to view all posts based on the month they were created.  While you will not be able to respond to these posts, you can view the responses that have already been left. 

If you would like to continue the conversation, please post your topic to the new bulletin board.  Please note, as part of the bulletin board’s updates, you will no longer be able to post a comment without first logging-in.  While you can still post anonymously, you will have to be logged-in and then select the option to post anonymously.  The change is due to issues with inappropriate posts, and by requiring participants to log-in before postings we can address this problem.  If you do not have an account with, please register.

If you have any issues or concerns, please feel free to contact the Melanoma Research Foundation.

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Hi all. I am wondering if anyone has heard of the term Post lymph node dissection pain syndrome? 

All the research i find is for breast cancer patients, but this research states that there are tons of people with this issue. Since my doctors are always trying to figure out why im still having such bad pain year after my surgeries, im thinking this could be a great topic at my next appointment. Just wanted to know if anyone else has heard of this or is experiencing severe chronic pain months or years after having their nodes removed. 





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triciad's picture
Replies 2
Last reply 4/25/2012 - 4:20pm
Replies by: triciad, Janner

Hi Everyone,

Well, here's my history. 

7/09 - first diagnosed...SNB, WLE - 3 nodes positive...groin area

10/09-10/10 - Full year interferon

7/11 - Intransit...same to remove and 6 weeks radiation

4/12 - found another's next?

So, I just got a copy of the pathology report.  It says, "Recurrent malignant melanoma, mulitlpe foci, focally present at the inked edge of the specimen.  Lymphovascular invasion is present."

It doesn't have anything about mitotic rate.  Also, never had "lymphovascular invasion present" mentioned before.  Please let me know if you know what this means...the good, the bad, and the ugly.

Thanks so much for your help.  I have an appointment with my surgeon tomorrow and oncologist on Monday, but I'd like to have some questions lined up.

Keeping you all in my prayers!





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Bonnets's picture
Replies 11
Last reply 4/25/2012 - 2:01pm

WIth my hubby having surgerey for tumor removal on Friday, with Sentinal node biopsy, I'm thinking ahead. If the tumor cells have spread to the noded we will be looking  for melanoma specialist. Since we are in the Hudson Valley I am thinking SKM. Is there more than 1 specialist there? Is there anyplace else in the NY, CT area we shud consider? Jean

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MeNDave's picture
Replies 8
Last reply 4/25/2012 - 12:48pm

I took Dave into Roswell yesterday due to the pain in his back that was not being managed by pain meds.  They admitted him, and did a brain mri as well as ct of abdomen/chest/pelvis.  Brain showed no bleeding, but possible swelling of the lining.  They did a lumbar punch to test his spinal fluid, which we haven't gotten the results of yet.  Floor doc says WBR if present. Steroids seem to help with the pain, and that worries me.

Kushalahni has already mentioned starting a chemo combo, and not IPI.  My question to all of you... which combo shows the best response?  We need to get this under control...

Much love to you all,


Don't ever, EVER, give up!

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Karin L's picture
Replies 2
Last reply 4/25/2012 - 12:35pm

One year after beginning HD IL2 the PET/CT showed all soft tissue disease resolved (numerous tumors in the groin lymph nodes and many in liver ) and all bone mets resolved.  Only issue was L5 area in spine.  Followed up with MRI of lumbar spine and it did show mel as well as a soft tissue mass close by encroaching on a nerve. 

I developed severe neuropathy ( believed to be a side affect from the IL2 treatment) in January.  It got progressively worse as time went on to not only affecting both hands and feet but I had numbness everywhere including my lips/teeth/ears...etc.  I couldn't feel my feet or hands whatsoever.  Treated with high dose steriods and tapered off for 15 days.  This was in mid March.  You could draw a line from my lower back down to my ankle with severe pain (not tolerable) right before beginning treatment....which was the nerve.  The steriod treatment helped immensely but the pain is still there (tolerable)  as well as some numbness in that leg only at this point.  This treatment was from my neurologist after various tests and consult with my oncologist.    Now we know that particular pain/nerve/lower back pain is from the mel.  Both were going on at the same time.

Met with my onc. yesterday for follow-up after the MRI.  My choices were 1. watch and wait with MRI in 8wks to see if my immune system will resolve this issue since it took care of everything else.  2. Radiation.  One in three chance it will either relieve the pain, relieve the pain and resolve the tumor, or do nothing.  3. Surgery which would be abdominal due to the location and while not risky, not without much recovery and chance of damaging the nerve. 

Meh.  At this point I chose to watch and wait.  Other than the pain which is a little above annoying and is relieved with low dose pain meds I feel great and I am told I look great.  Dr. feels why take chances if what is going on may actually be healing. 

Am I crazy?  I agree with make your decision and don't look back but if anyone has anything they would like to say PLEASE do so.  Many times the thought process kicks into a higher gear with others thoughts.  Are we missing something? 

This is crazy long so if you read it, thank you.  If you reply, even bigger thanks!


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