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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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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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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tommy90's picture
Replies 12
Last reply 11/21/2012 - 10:25pm

 I noticed this new mole, maybe 6 months ago. It's been the same. It is probably like, 1mm in size. Absolutely TINY. This pic was taken with a really high def camera.
It has these 3 little black dots in it (they are barely visible with the naked eye, you really need to straaain to see them, probably 1/3 of a milimeter? 1/4 of a mm). It hasn't grown, in my opinion.
Do you think this is cause for concern? I don't have any moles like it, but I am worried.
Time for doctor, or no big deal?
picture.
http://i47.tinypic.com/34h9ymu.jpg

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AlisonC's picture
Replies 9
Last reply 11/21/2012 - 10:08pm

Hi all,

I got such a lot of support from this board some years back and feel bad that I am not here more often to "pay it forward".....each year it's my mantra to try and give more back.

Just stopping by to say though, that I just marked 11 years NED since my lymph node dissection and clinical trial.  I've been the uber-compliant patient from complementary treatment perspectives - meditate, juice, exercise etc etc (thank goodness even complementary treatment protocols include wine and chocolate !!) as well as all my mainstream medical stuff (excisions, clinical trials, scans etc) and so far so good.  Maybe an indolent mel but I'll never forget how it felt to walk down the corridor labelled "oncology" for my first meeting with my (wonderful) doc.

And thanks to the MRF and this board in it's various incarnations over the years.  It's been a lifesaver every bit as much as my medical team was.....(so far).

Taking nothing for granted but very pleased to have beaten the 10 year mark....

thinking of you all

AlisonC

Stage IIIB

NED since 2001

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Jls377's picture
Replies 5
Last reply 11/21/2012 - 3:16pm
Replies by: Janner, Gene_S, POW

I am trying to find out if it is worth trying the hypethermia treatments in combination with radiation. I have heard mixed reviews from the doctors.

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/21/2012 - 10:42am
Replies by: alankravitz, Anonymous, JerryfromFauq, rbruce, POW

Study to Assess the Safety, Tolerability, and Pharmacokinetics of AMP-224 in Patients With Advanced Cancer:

http://clinicaltrials.gov/ct2/show/NCT0 ... 884&rank=1

Contact: Margaret Fleming clinicaltrials@amplimmune.com

Trial in 3 locations: Michigan, North Carolina, Tenn.-see link above for speicific locations & contact info.

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Anonymous's picture
Anonymous
Replies 11
Last reply 11/21/2012 - 10:36am
Replies by: Anonymous, Hawaii Bob, jmmm, Randy437

Hi, my family member had melanoma on his face 15 years ago probably stage 1. He had it removed and has been ok up until now. It has returned. He will have a Petscan and MRI on Friday and probably surgery shortly after. It is stage 3 now. Who are the best doctors in the St. Louis area or should we be traveling to Chicago? Thanks!

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melalisa's picture
Replies 3
Last reply 11/21/2012 - 9:50am
Replies by: Anonymous, POW, Janner

I will try to make a long story short. Back in August I had an 8 mm mole removed from my calf that turned out to be melanoma.  The original path report showed .89 breslow depth, Clarks level III, no ulceration, and it did not list a mitotic rate. My dermatologist did a WLE and said he does not recommend SLNB's for melanomas under 1mm breslow. The WLE came back all margins clear. In the meantime, I scheduled an appointment with an oncologist that specializes in melanoma at the Ohio State University for a second opinion.  He had the original lab forward my slides to his pathologist.  The original lab took over a month to forward the slides.  I finally saw him today and his pathologist shows the mitotic rate is "approximately 1/mm2". He was struggling with whether or not to do a SLNB because he usually does it if the mitotic rate is higher than 1 and does not do it if it is lower than 1 and mine is "approximately 1".  He tried to call the pathologist to get her opinion and could not reach her.  He finally decided to have me see the surgical oncologist to let him decide. They should be calling me in the next few days with my appointment date and time for that. 

I am a little shocked because I was hoping and assuming that I was just going today to get the final all clear and instead I am back into another waiting game and it appears I have gone from T1a to T1b based on that mitotic rate.  I found an article on the Skin Cancer Foundation's website that says the AJCC Melanoma Staging System recommends a SLNB for patients with "T1 melanomas and secondary features associated with increased risk for nodal micrometastases: ulceration, mitotic rate greater than or equal to 1/mm2, or Clark's level IV, especially when the primary melanoma exceeds 0.7 mm in thickness". So mine is greater than 0.7 mm in thickness and has a mitotitic rate equal to 1/mm2, which means that I should have this test.  Of course, this is just one opinion. 

On one hand, I do not want another surgery, but on the other hand I would rather be safe than sorry.  Does anyone else have any experience with this?  If I do end up having the SLNB, what is the recovery time and how soon can I expect to go back to work?  I have a desk job that does not require any manual labor or heavy lifting. 

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mama1960's picture
Replies 7
Last reply 11/21/2012 - 5:46am

Tomorrow will 7 weeks since surgery. Still sound 200 ML per day. Yesterday, the stitch holding one of the tubes pulled out, and the tube came out enough to lose vacuum in reservoir. I will be calling doctor in the morning, but just want to hear from others that this has happened to. Right now, I'm taped and strapped up.

It is what it is.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/21/2012 - 5:45am

Has anyone stopped taking zelboraf and switched to yervoy with good results? wondering if that would be a good idea and keep zelboraf for back up if yervoy fails.

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