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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lrkg1234's picture
Replies 6
Last reply 11/28/2012 - 9:15pm

Scott is going to be starting IL-2 this week. Probably on Wednesday.   He had a small spot on his brain and that is going to get zapped on Monday.  it's very tiny so no one is worrying about it being a problem with the IL-2.

I know it's going to be very hard on him, but the potential results are promising.  I'm so worried that I can barely sleep.  The stress is really doing a number on the whole family. 

Praying for a miracle. 

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Linny's picture
Replies 3
Last reply 11/28/2012 - 10:43am
Replies by: mel123, POW, kylez

Great article that summarizes treatments for melanoma. I really like how it provides summaries of trials.

http://www.biomedcentral.com/1741-7015/10/23

 

Stage III, Unknown Primary; 1 positive node in left axilla

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bekahboo82's picture
Replies 1
Last reply 11/27/2012 - 12:20am
Replies by: Janner

I was recently diagnosed with a Lentigo Maligna Melanoma (in-situ).  Plastic Surgeon obtained 5mm margins which came back clear.  I am finding some conflicting information on wether these margins are sufficient.  My Melanoma-in-Situ from 2009 was also clear with 5mm margins.  Is there a difference in recommended margins for Lentigo Maligna and regular Melanoma-in-situ?  I am worried now that I need to have more taken from the most recent site as well as from the 3-year-old site.  Any suggestions/insight?

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audgator's picture
Replies 4
Last reply 11/26/2012 - 10:11pm
Replies by: Bubbles, audgator, kylez

To recap, I was an unsuccessful Yervoy patient and went almost straight into an anti-PD1 trial. I did the 2 rounds of infusions every 2 weeks for 12 weeks each, ending almost 3 months ago. So I am a week away from my first maintenance infusion.  I have had intermittent itching ever since the Yervoy. It subsided somewhat but has been mostly on my shins/calves.  The last few days it has appeared on my upper arms worse in the tricep area. Are others experiencing a nomadic rash and/or a rash lingering this long after no infusions for 3 months?  Any opinions on whether this is still a Yervoy side-effect or more likely from the anti-PD1?   Dan

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BethA in VA's picture
Replies 2
Last reply 11/26/2012 - 12:05pm
Replies by: dodgedh2, Tina D

I just passed the 8 year mark of NED with Stage 3/B Melanoma.   For the first time since 2004 I don't have to return to my oncologist for one year!!  This is a big victory.

At the same time I got good news, the husband of my friend was fighting for his life.   He only had a 8 months since diagnosis, and thought he was responding well.  Then about 1 week ago, he had Gamma Knife surgery, and was unresponsive from then on.  I attended his funeral today.   We rejoice that his fight was not long, but I feel so bad that he just never seemed to have a chance. 

I think I feel guilty...which I  know makes no sense.  But I am well, and he is gone.  This has brought back many emotions that I thought were gone. 

BethA   Once again NED 8 years        (NED 10 years between MM #1 and #2)

Melanoma tends to cut into your looks!!

 

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Replies by: Dr. Mark, Nicky

Hi all - I've posted this in a number of places not knowing which forum I was actually supposed to be in so hopefully I'm in the right place now.

So, here it goes...

My father was diagnosed with invasive melanoma with the desmoplastic sub-type about 2 weeks ago. Below are some highlights of the report:

A) Invasive Melanoma of the Scalp - Desmoplastic Type

         - Clark Level IV; Breslow Depth 5.1mm

         - Negative for ulceration

         - Margins negative

         - One benign sentinel node

B) Primary tumor: pT4a, 5.1mm depth, no ulceration, mitosis 2/mm2

     Regional Lymph nodes: pN0

     Distant Metastisis: pMX

     Pathologic Stage: IIB

     Lymphovascular and perineural invasion: Not identified.

I know of only one other person with this sub-type (well, only 1 who replied several days ago -- Thanks Kathy!) on this board and I just know there's got to be someone else.

Like I mentioned, this was today and I'm more concerned with the depth. They tested his blood on the spot which was negative as well as all blood panels (liver, etc.) -- I do know that this isn't really that much of a factor in determining though.

He's set for a CT scan and whatever else is needed and there will most likely be some adjuvant therapy because it was so deep (I'm guessing). Next week, he is also scheduled to meet with his radiologist as well as a geneticist to determine if there is a genetic pattern in our family -- which is interesting, considering my grandfather died of pancreatic cancer, his brother died of liver cancer, my uncle is in remission of colon cancer, and other relatives have had other kinds.

I would say based on what I've read, that the promising factor in my father's case is that it is a sub-type that is usually unlikely to metastasize; however, I still think this sub-type isn't fully understood -- and also given that it has a high rate of recurrence.

So, sorry everyone for the long-winded reply but this is really devasting to my family and I'm the one on the research end. My mother called me earlier and said she started crying when they took off the bandages and it was basically a crater in my father's head. This of course made me upset.

If ANYONE has had any 1st hand experience, I would appreciate the info, encouragement, etc. We are in the East Texas area and have some really great docs, including lines of communication with MD Anderson for our second opinions, but personal experience would really mean a lot to me.

THANKS!

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beatricefromPARIS's picture
Replies 1
Last reply 11/25/2012 - 9:48pm
Replies by: DonW

Hi guys,

A bit of update 3,5 years down stage IV diagnosis

8 months on ZEL (full dose in March April then half-dose since May)

Everything almost gone in July PET

Quasi NED November PET (one bowel lesion at 2.2 suv uptake considered not significant)

ZEL treatment goes on 

I'm happy but tired and not able to go back to normal life because of treatment fatigue

...and in the back of my mind, the possible (accelerated?) recurrence if Zel stops working.

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Colleen66's picture
Replies 5
Last reply 11/25/2012 - 8:46pm

First thing....I apologize for so many questions and such.  I just keep thinking of bases I feel I need to cover.

In February (I think) my regular Doc ordered an X-Ray because of a fall I took, it was of the neck.  Nothing broken but showed a cyst or whatever.  They did an ultrasound, nodule on my thyroid.  Doc says it showed signs of calcification and most likely nothing to worry about.  2nd scan in october, looks about the same.  Scan again in 6 months.  No problems.

July is when I found out about melanoma.   Endocrinologist does not seem concerned.  My brain is screaming.  I can't keep up with everything.  I'm thinking back burner for this.  I know it's in my records but I have no clue if my Oncologists have read them through. .   Should I press this issue? Or just try and calm myself down and get through the next year.

Thanks (again) for reading.

Colleen 3A

Live!

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aldakota22's picture
Replies 14
Last reply 11/25/2012 - 6:29pm
Replies by: Anonymous, mclaus23, Jeff's Mom, kylez, aldakota22, Karin L, lhaley

 Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

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squirrell68's picture
Replies 2
Last reply 11/24/2012 - 9:44am
Replies by: squirrell68, Phil S

My brother John has just completed his 4th round of biochemo, so far (everything crossed) he has a good response to the treatment. He has developed vitiligo and experienced the usual side effects once he is home. My question to all those who have been through the treatment, is whether it is normal to have such a variation in the side effects during the treatment? Treatment one was tough, treatment two was a bit better, treatment three was loads better but treatment four was really tough again. Is this normal?

Determine to keeping fighting.

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dian in spokane's picture
Replies 10
Last reply 11/24/2012 - 9:37am

okay! Well, I couldn't really find anyone to speak up and say that they've had targeted radiation for a lung met, but that's the route I'm going for. I see them for set up today, and next week will start 5 treatments of SBRT, two a week, to kill off that single nodule in my right lung.

There is an enlarged lymph node in my mediasternum, which my oncologists do not believe to be melanoma (it is 19 mm, so bigger than the nodule we are removing) but has not lit up a single PET scan so we are just going to watch it with the same scans we use to follow the radiation success.

They are also doing a little genetic testing on my biopsy sample, looking for the CD 30 antigen, for a possible monoclonal antibody study in the future. And today I might look at how much of that sample is left for some other genetic testing.. maybe an anti pd1 trial.

I am also still considering a trial (if I can find one) that might be available post radiation, but I'm not all that keen on ANY trials this time around.

My radiation doc was very encouraging, talking to me about another melanoma patient he has who he's been treating for 10 yrs now, occasionally frying out new nodules as they appear and returning her NED status. She, like me, is one of those melanoma patients who have had single tumors pop up after years of remission. SO I like that.

This nodule, I think, is the perfect way to experiment a little and see if SBRT can be effective for me in the future as well. It is such a slow growing thing, that even if the SBRT doesn't work, I'll still have plenty of time to try some other thing in six months if it turns out not to be dying.

Since I haven't been able to find much on here from people who've used SRS for lung mets, I'll be on here reporting how things go for anyone who might want to consider it in the future. (Consider this a CALL OUT to anyone out there who HAS dealt with a single lung met this way, please chime in!)

I'm also interested in looking again at any trials that might be available for stage IV patients with no measurable disease. Something I could maybe get into after the radiation is done.

Thanks!

 

Dian in spokane

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parkmk80's picture
Replies 6
Last reply 11/23/2012 - 9:18pm
Replies by: Janner, parkmk80, Anonymous

Hi, I'm a 32 year old female who has atleast 200 moles.  I have been diagnosed with Dyplastic Nevus Syndrome and have had atleast 20 moles removed.  All but 2 have came back mild while the other 2 were moderate.  I just received pathology report on 3 moles that were cut out by a new dermatologist.  My old derm who I still see as well never sent me a path report.  So they all three came back the same way.  Can someone please explain some of these things.  Like I said I have atleast 200 more of these things on my body and just found more on my scalp.  I'm concerned since I was an avid sunbather until I was 30.  Anyway here is the path report. Any and all comments appreciated!

 

DIAGNOSIS: Compound melanocytic nevus with  mild dysplasia, excised (surgical margins not involved)

Histologic sections demonstrate skin with a melanocytic proliferation.  Melanocytes are present in nests, with scarttered single cells located predominantly along the dermal/peidermal junction, extending along elongated rete ridges.  There is occasional bridging of horizontally oriented nests of melanocytes between adjacent rete ridges.  The melanocytes display slight cytologic atypia.  Pagetoid cells are not prominent.  Papillary dermal fibrosis, a mild lymphocytic infiltrate, and melanophaes are noted.   Nests of melancytes are preent within the papillary dermis and appear to be relatively mature and lack significant cytologic atypia.  Surgical margins are free of mevomelanocytes on sections examined.

 

 

Thanks so much,

Mary

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lrkg1234's picture
Replies 4
Last reply 11/23/2012 - 9:12pm

Well, here we go again.  My husband Scott had been on the Dasatinib trial here in Indianapolis.  He is stage four with inoperable tumor in the esophagus as the primary location and liver mets.  We could tell that the drug did not seem to be working and he got a scan early, proving that it was not working.  The existing tumors had grown some, but there was not any spreading.  He was kicked out of the trial and we are in an information gathering state right now, trying to come up with a plan B. 

There have been so many conflicting doctor opinions that it's very difficult to make a decsion.  Here is what has happened so far. 

Dr. Fecher

We met with the melanoma doctor here, Dr. Fecher.  She suggested a PEG feeding tube be inserted before things get too bad.   Sounds horrible and I'm so sorry for Scott having to get this, but he is going to do it the Monday after thanksgiving.  She also sent us to a radiologist to see about getting a few quick zaps in the esophagus to possibly shrink  the tumor.

After we met with the radiologist he suggested a stent now and then possibly radiation later.  He did not seem sold on the radiation - NOT encouraging.  Also a lot to absorb because Dr. Fecher does not like stents.

Dr. Fecher then met with her tumor board at the hospital.  She said the general opinion was radiation would be bad, forget that idea and go for chemo.   It makes me very uncomfortable that she changes her mind on the radiation after previously making the recommendation.  Scott could have easily already had the radiation treatment with the possible damage already done.  Doctor Fecher does not like IL 2 for Scott because she said possible vomitting would be bad on the esophagus/throat.  I thought the chemo would make you vomit too???  She just wants to do the chemo and then somthing else later, maybe another trial or wait and see if he can get into an anti-PD-1 trial or something else.  She has not discussed IPI. 

 

Vanderbilt, Dr. Puzanov

We went to Nashville on Wednesday and met with Dr. Puzanov.  We wanted to get into the Anti PD-1 trial there.   Too late.  All of the slots are filled up.  He thought radiation was NOT a good idea and said to never jump into anything.  He was suggesting IL-2.  Scott is strong enough and young enough to take it. 

Moffit, Dr. Weber

Suggested IPI and maybe radiation later if that doesn't work. 

 

Our opinion

After researching the chemo it didn't seem like the BEST idea.  It could work, but could be done any time so why use it now?  It does not seem like the most promising treatment.    Ideally an anti PD-1 trial would be available, but we need a back up plan. 

The two best treatments seem to be IPI or IL 2.  I prefer the IPI because it takes a while to work.  If the cancer progresses then he might not have time to try it.  Scott is not sure which he would rather do. He likes the idea of IL2 because of quicker results and small possibility of a very durable response.

We want to make a decision and get started on treatment within 2 weeks.  We are going to meet with the other Melanoma specialist at IU named Dr. Logan just to get a second opinion.   Dr. Fecher says that Dr. Logan  thinks chemo is a good idea, but we want to hear it come out of his mouth and not hers. 

We are also going to meet with a general oncologist, Dr. Bhatia  that we had worked with when Scott was first diagnosed.  He is with Community North hospital.  Community  just joined into a partnership with MD Anderson on a cancer collaboration.  Now Dr. Bhatia will have access to the opinions of the melanoma doctors at MD Anderson.  That seemed like a real gift.  It was just announced on Thursday of this week.  Hopefully he will have a suggestion.  When we originally met back in August he had thought that IL 2 was a good idea. 

 

The stress of the decision making period is so horrible.  None of this is easy, but the times between treatment seem to be the hardest.  Any suggestions about what to do are appreciated. 

Lisa (Scotts wife)

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MRFUser2011's picture
Replies 8
Last reply 11/23/2012 - 7:50pm

I keep reading in people's post about annual blood tests (and it sounds as if this is the only follow up for some even at Stage III).  I am wondering if there are specialized blood tests that can detect melanoma?  All I have ever had is a typical blood panel at my oncologist's office.  Thanks for any info.

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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Hi everyone Brent is on the trial Anti PD 1, at Moffitt. It will be two weeks on Tuesday and right now he is hospitalized due to dehydration and rib met pain. I have heard of the tumors becoming swollen and painful. He has a large tumor in the area of his right flank. Anyone with experience. They are talking about at nerve block so he doesn't have to take so much medication. Anyone ever had a block done and does it work?

Blessings to each of you and thanks.

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