MPIP: Melanoma Patients Information Page

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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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Nancy's picture
Replies 7
Last reply 8/18/2010 - 3:38pm

Buddy was hospitalized yesterday - his blood count was 8 - so they're keeping him overnight and transfusing.  Hopefully, when they check him this morning, he'll have the 'Blood of an Irishman" flowing through his veins, and will get to come home.  He had the IPI treatment last Tuesday and I think it may have made him a lilttle weak...but we'll get him patched up soon and back in the orchard (I Hope).

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Nancy's picture
Replies 7
Last reply 8/18/2010 - 3:27pm

I've heard you don't know if one is respondng to IPI for three months.  Buddy had one tumor shrink and the others that were measured increase in size.  He's had no side effects, the fatigue was there already due to craniology and WBR--He has numerous tumors - liver, lungs, spleen and the brain mets.  Dr. said he is anemic, will have blood transfusion next week.  Also, if he has any more imbalance while walking, he will need MRI - said he could get gamma knife and still continue with IPI- do you think they would do a gamma knife to brain mets if he has more than 3?  Is there a pill or something for blood - H&H is 11 - going south quickly, will transfuse at 9 - has blood work Sunday.  Is there anything to do to prevent a seizure that we are not doing now? 

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tricialeigh44's picture
Replies 1
Last reply 8/18/2010 - 10:46am
Replies by: lovingwifedeb

I just wanted to thank you all. My aunt found this forum and linked it to me. I have been trying to read as many posts as possible (with a 2.5 year old and 13 week old). My mom was diagnosed with stage 4 malignant melanoma  a few weeks ago (July 28 at 3pm to be exact)...who could ever forget an appointment like that.

I have learned so much from all of your posts and have been able to further investigate different therapies available to my mom. Most importantly I have realized that we are not alone in this horrible nightmare. There are good people all over the world fighting this disease.


I just wanted to thank you for giving me strength for my mom and my family. Keep fighting, there are so many treatments coming out for this disease and I am sure a cure is on its way!


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susanlee's picture
Replies 2
Last reply 8/18/2010 - 10:10am
Replies by: Phil S, babybluiz

I wanted to post a message to thank everyone for the words of support and encouragement you have given regularly. I have been viewing the posts on this board since my diagnosis mid-May 2010. I have acral letiginous melanoma of my left thumb. SNB and amputation of thumb were completed in June 2010. SNB was negative thankfully.  Chest x-ray, abdominal ultrasound and blood work were all within normal limits. Tumor size (7.9 mm) and mitotic rate (8/mm2) however were concerns for my doctors.

I am having a CT scan tomorrow to establish a baseline and will be starting Interferon this coming Monday. I am not sure how I will react and how quickly the side effects will impact me. I know it varies from person to person but would appreciate any information you could provide.


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joy_'s picture
Replies 4
Last reply 8/18/2010 - 9:53am

My husband was hoping to qualify for the Derma study, but we found out today that he didn't.  He's currently stage IIIc and we are looking into other treatment options.  This looks to be a Phase 1 study, and I am curious if anyone out there knows anything about it or has received this treatment.  I've searched the board and couldn't find anything about it.  Maybe it is known by another name?


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Joyce's picture
Replies 2
Last reply 8/18/2010 - 9:03am
Replies by: ValinMtl, triciad

Dick just had his scans and now has been NED for 4 years. He had his last surgery in June, 2006. He took the vaccine made out of his tumor and GMC-SF and then had 4 infusions on anti ctla-4. I have been known as Dick's wife (Dick stage 4) but I think that changed with the new format.

Joyce from MA

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My mom was just diagnosed with stage 4 malignant melanoma. She is 54 years old. She  has the choice to go for the IL 2 therapy or the  option to do the clinical trial with B RAF inhibitor vs decarbazine and if it doesn't work she can THEN go for the IL 2 therapy. Our concern is that she may get sick or too unhealthy to do the IL 2. Can anyone on her tell me how sick you get on this clinical trial and if it is worth trying before going for the IL 2.

Any information on B RAF vs Interleuken 2 therapy would be greatly appreciated. I have done searches on the internet, but I would love to hear some personal stories on both therapies, pros and cons. This is a huge decision for her and i want her to have as much information as possible.


My next question is how are you all keeping yourself healthy. I have looked up all foods that have antioxidants and try to incorporate them in each meal. She is taking 1000 micrograms of vitamin D and is taking a multivitamin. Other than that I am trying to keep her on a balanced diet. I want her to conserve as much energy as possible, but excercise as tolerated.


Thank you so much in advance for any information!


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mifis's picture
Replies 1
Last reply 8/17/2010 - 6:53pm
Replies by: washoegal

Hi there,

I am asking for advise yet again on the melanoma in situ that I had removed from my upper left arm. A  brief recap.... the intial mole was excised by the dermatologist on 5/17/10. It was diagnosed as melanoma in situ. I saw a plastic surgeon on 6/7/10 and had another, somewhat larger excision and the pathology report recommended a further excsion as "In block 3, the residual proliferation of atypical melanocytes is virtually transected at a lateral margin". The plastic surgeon said I didn't need a further excision, that it was just my 'skin type' (freckled and fair) and sun damage that was showing up and that atypical melanocytes would appear probably anywhere on my skin. I decided, against his advise, to have a further excision which was performed on 7/28/10. The plastic surgeon told me over the phone that further atypical melanocytes had been found "as he expected", and that he would suggest leaving it at this point and just watching closely. He did tell me, however, that he had spoken to the pathologist, "with whom he shared great concern about me" and that the pathologist had suggested that a further biospy might be done on the same arm in the same area, but a couple of inches away from the original site, to make some comparisons. The idea is that if further atypical melanocytes are found, we might assume that it is truly a reflection of long-term sun damage and not limited to that particular area. He assured me that the original lesion has been completely removed. He also told me that melanoma in situ is a complete diagnosis, that it couldn't be described as a particular type of melanoma at this stage. That contradicts what I have read here and on other sites. I posted all of this the other day and got some repsonses which were helpful, but I received the pathology report today in the mail and it sounds a little more alarming. You will find it below.

I am asking for some help deciphering it and suggestions as to what I should do next. I am thinking of getting a second opinion and also wondered if anyone knew of a melanoma specialist in the Central New York area. I am also willing to travel. Both NYC and Boston are about 4-5 hours away.

Forgive me, but I am going to type out the entire patho report! Here goes....


Histologic  sections on a fusiform excision of skin with adipose tissue at the base show epidermis with solar elastosis and mixed chronic stromal inflammation and a dermal proliferation of nevoid melanocytes within the superficial dermis transected at an edge. There is overlying irregular junctional melanocytic hyperplasia. Centrally, there is stromal fibroplasia and mixed chronic inflammation, compatible with scar transected along an edge. There is adjacent irregular melanocytic proliferation with rare pagetoid melanocytes within deeper levels.



COMMENT: The scar and the melanocytic hyperplasia are transected along an edge. There is a dermal proliferation of nevoid melanocytes which does not appear related to the overlying junctional melanocytic proliferation. Although these findings may represent the background changes associated with chronic actinic damage, the extent of disarray and atypia is very concerning. Comparison with adjacent similarly sun-exposed skin, not involving the excisional site, may be of diagnostic utility in further evaluation. Thsi specimen was reviewed in conjunction with case #....... This case was seen in consultation with Drs T Chang, J Bass and C Jaworsky"

It then attaches the previous reports from the previous excisions. It was signed by Dr H Winfield.

Thanks very much. It is all a bot scary. i know most of you have got much worse stuff going on and I appreciate your time and support.


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Sharyn's picture
Replies 16
Last reply 8/17/2010 - 5:01pm
Hi everyone,
I sent this out as a personal email to many of you, but I wanted to share with my whole MPIP family.
In my last update, I was expecting a call any day to go start the Ipilimumab trial in Montreal. Well, the call still hasn't come. Apparently there's some bureaucratic hold-up with the IRB (Internal Reserarch Board). Dr Mihalcioiu had decided on July 15 that he would use my lung and breast tumors as a baseline to measure progress, so on July 28 I had an ultrasound and x-ray to record the starting point, assuming we would start within the next few days. Everything seemed in order.
However, within the next few days, I developed a huge golf ball sized lump on the side of my breast and it was quite painful. My family doctor, Marie O'Dea, put me on an antibiotic and pain killers on Aug 4. The next day, the lump broke open and discharged a lot of the infection, and I've been having to continue to drain it twice daily ever since. (Talk about gross!!!) I saw my oncologist, Dr Rorke, and radiation oncologist, Dr Norman, on Aug 9, and both recommended a mastectomy. (I had already emailed Dr Giacomantonio in Halifax, and that was his recommendation as well.) Apparently, the centre of the tumor has died, and the necrotic (dead) tissue has become infected. The only way to get rid of it is to do a mastectomy. A lumpectomy is not an option, as the tumor mass has now taken over more than half of my breast, and is over 10cm in diameter -- bigger than a baseball.
So on Aug 10, I saw my surgeon, Dr Pace, who concurred with the other doctors, and put me as high priority on his OR list. Tomorrow (Monday) I will have my pre-op tests, and the mastectomy will be done on Thursday. He will also excise most -- if not all -- of the 10 tumors on my leg. They're not causing any trouble, but if they're gone, I won't have to worry about them.  I might as well get the best bang for the buck on the general anesthetic.  I'll be kept in hospital overnight, and discharged the next day.
I've been trying to come to terms with the mastectomy. I don't mind the fact that I have to have surgery, and if it was just to have another chunk taken out of my leg, it wouldn't bother me a bit. But the thought of losing a breast is a very personal thing for a woman, especially with my generous endowment.  But the alternative sucks, so it's a no-brainer, and I just have to suck it up.
Meanwhile, the way things are going, I expect I'll have the surgery and be fully recovered by the time Montreal gets its act together with the Ipilimumab trial. So that treatment is still on the horizon, just delayed for a bit. Say a prayer for me Thursday.
Stage IV
WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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lovingwifedeb's picture
Replies 1
Last reply 8/17/2010 - 1:52pm
Replies by: joy_

August 14, 2010


Do You Believe In Monsters?


I have personally known a few monsters at different times in my life, some who have loved the dark places in my youth. For example, in my bedroom at times they loved to lie in wait for me just to scare the pants off me. Sometimes from my closet or even more closely from under my bed was a favorite place for my monsters to hide, which made going to sleep almost impossible. The dark… the monsters… the unknown… the long shadows moving this way and that way just waiting to consume me. I will never forget that feeling of absolute terror.


Bob and I visited the doctor’s office (Oncologist) on Wednesday listening to our options for treatment. I do say “our” because we are in this together, I have taken my vow of  “for better or worse” seriously as I look over at him with tears in my eyes. It’s the first time I could not hold them back and for that I am sorry, very sorry.


We are in stage 3 (stage 4 involves an organ), but today Bob is cancer free.


Today all tests indicate there is no sign of melanoma seen within/without his body (that any machinery to find). But we still can’t forget that the primary melanoma that caused the cancerous tumor in his leg in the first place is still at large and too small for any test to find.


The monster is in the dark and waiting.


Since all is quiet within Bob’s body, this melanoma can’t be treated by any chemotherapy, the doctor says. Option 1, Try Interferon which boosts up the immune systems, it takes 2 years and makes one very sick the whole time you are on it, and has only a 5% chance of working. Option 2, Join a trial study group that uses a vaccine for melanoma. 2 of 3 people get the vaccine, 1 person gets a placebo. Option 3? Do nothing.


The monster is in the dark and waiting.


I looked over at my husband realizing if love ever had a meaning for me it was today as it slammed against my chest beating wickedly, straining as my heart tried to catch up to the very foundation of what our lives going to be from this day forward. What if…


The monster is in the dark and waiting.


If you would like to follow our family blog page please go here:

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Hi All,

So I thought i'd update you on our day with the doctors....

Turns out the chemo (dabarbazine) did not work. Big surprise :-( the bone lesions have all grown in size but only by about 15% in 2 months and no new sites, which i'm taking as positive.

Turns out the study they want to put him in is :

And he will be the 4th person in the world to try this drug combo. We start on Sept 3rd. Fingers, toes and quite frankly everyhting else is crossed.

They going to radiate some of the lytic lesions to reduce the pain. Any one else had bone lesions radiated? Any side effects i should be expecting?

will keep you posted on results.

thanks for listening.



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I tried to access chat last night...but couldn't get in.  The WALL STREET JOURNAL online has a section called SPEAKEASY and is reviewing the show.  I will post the link.  You first must register with the WSJ to leave your comment....but what a great FREE forum to air your views.  It will just take a minute and your opinion will be viewed globally!  Stand up and be heard!

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KRob's picture
Replies 1
Last reply 8/17/2010 - 7:55am
Replies by: kwahlbin

Sorry to use the main board for this question, but I have been frustrated for weeks trying to log-in to the board and always getting an "incorrect" message in response. When I try to "reset"  my password, the only message I get in my email is a "one time only" access link with no new password. When I edit my info (username and password) using that link, I can never get back on through the regular "log in".

Any suggestions?



"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Everymoment's picture
Replies 11
Last reply 8/16/2010 - 11:35pm


As you all know, I have had four melanomas and a SNB, all clear and still stage 1. I was a pretty balanced person before this, no pills or alchohol or really anything. All my friends used to joke that I was "naturally high." Since my last melanoma over a year ago, things have started to change. Not only I am on Cymbalta, at a high dose, but I am now drinking like a fish. I am also using food as an addiction. What happen to the balance! Has anyone else gone through anything similar?


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debbieVA's picture
Replies 8
Last reply 8/16/2010 - 10:39pm

I just spoke to Sue and Todd, Jerry's wife and son, he remains in critical condition on a ventilator, with head and facial injuries.  He has not responded in 36 hours but is on a Sublimaze and Versed drip, so this is not unusual.  His vital signs, B/P, heart rate, are now stable.  He is in St. Anthony's Central, Denver CO.  Room 206, NICU (neuro intensive care).  

Jerry has always been a very faithful person....please keep our good friend and Melanoma buddy in your prayers.  

Thank you....


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