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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Anonymous's picture
Anonymous
Replies 2
Last reply 8/24/2016 - 2:36pm
Replies by: Anonymous, WithinMySkin

Wondering if anyone has ever had this operation done?  I have stage 4 melanoma and the main area of concern is area on right upper side of maxillary.  Has also spread into sinus cavity.  In a study now, but dr said goal was to shrink tumor enough to have this operation done.  From what I have researched, this procedure is horrifying!!  Any input would be helpful.  Thanks.

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dmturner's picture
Replies 10
Last reply 8/24/2016 - 12:44pm

Hi All:

I had posted a couple weeks ago that I was going to go the immunotherapy route instead of the CLND of the right groin.  Okay maybe on the fence on what to do.  Well no turning back now.  Did the first treatment on Wednesday.  Did not know it would be 4 hours long, I guess I assumed it was 2 hours.  So far no side effects.  Went to work the next day.  I work in retail and on my feet for 8 hours.  I still have swelling of my right foot/let, I am thinking from the SLNB.  That is one of the reason I did not want to the CLND cause I am prone to swelling.

My oncologist still brought up the CLND that morning.  He does understand my decision.  I told him if I was diagnosed a year ago then that would of course been the decision.

I will keep you all posted on side effects.  Next infusion is Sept. 7th.

Be Brave!

Donna, TX

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Julie in SoCal's picture
Replies 6
Last reply 8/24/2016 - 11:45am

Dear Friends,

For the last year and a half or so, I've felt like I'm living with my toes over the edge of Stage 3c; one foot in and one foot out of stage 4.  I've had so many small possibly benign things pop up.  As of yesterday's scans, though I'm now both feet in stage 4 as a 13 x 19 mm hotspot was found in my left lung.  I also had another small intransit pop up.  So it seems Pembro is going the way of IPI, only working for so long and then slowly failing.

So what's the plan? The tumor is small, and doesn't seem to be rapidly growing so I have time to research and find a plan that I'm comfortable with. Also, surgery is an option.  The met is in a very resectable place and is not yet big.  Clinical trials are also an option. Rock Star doc has also given me 2 clinical trials to look at: one targeting NY-ESO-1 (ID-LV305-2013-1) and the other targeting JAC-1 (INCB39110-107).

My instincts (and past plan) has been to leave tumors where they are and attack them with something systematic.  My thinking was that once Mel has left the building and traveled all around my body via blood and lymph systems, only a systematic treatment will work.  And Surgery's always an option I can keep in my back pocket.  

So this is how it is.  Is anyone on the NY-ESO or JAC-1 trials?  Has anyone else failed IPI and PD-1 and joined a clinical trial? Which one did you do?  Looking for all advice and options.

I'm grateful for this community and for the support, knowledge and wisdom they share. Thanks, friends.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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Ally1986's picture
Replies 3
Last reply 8/23/2016 - 10:25pm

Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/23/2016 - 9:46pm
Replies by: sister of patient

I noticed a dark brown almost black spot on the sole of my foot. I mentioned it to my pediatrist (who i was seeing for plantar fasciatis) and he told me not to worry about it...that it was just dried up blood. Well, last week the plantar fasciatis was becoming unbearable so I made and appt. so see a new podiatrist as the old one has since retired and the first question that he asked me upon examining my feet was was i aware of the spot on my foot? I told him what the my old podiatrist had said and he looked at me and said that it was not dried up blood. He then asked when was my last physical and he told me to make an appt with my primary care physician as his opinion was that i needed to have a biopsy to make sure it wasn't skin cancer. I immediately made an appt with my primary care doctor who agreed with the podiatrist. She had her office schedule an appt with a dermatologist/Mohs surgeon. My appt is this Friday. My doctor said that they are going to access the affected area and then perform a biopsy at this visit. I'm so scared. I have no idea what to think. I honestly don't think that I've had enough time digest what is going on. I haven't told friends or family....just my spouse because i don't want to make something out of nothing but I don't know what to think.

 

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/23/2016 - 9:24pm
Replies by: Casitas1, VeraB

Hello all, 
Looking for some advice and support here. I have been undergoing immunotherapy treatment which has been decreased from a two drug therapy to a single drug therapy (Keytruda) but the side effects have been unbearable lately. I have been hospitalized with colitis about 2 months ago and then again with pancreatitis a few weeks ago. I am now home but check ups with the oncologist show a lipase level that is not decreasing. I have been taking corticosteroids at home as well as had an IV infusion today. In addition to my recent weight loss of 15 pounds, I have been extremely fatigued and find it difficult getting out of bed every morning. However, latest CT scans do show progress and benefits of the therapy. 
I am on a bland diet for the pancreatitis although I have had no appetite anyways.

Anybody else struggling with the adverse effects? Its becoming increasingly difficult fighting this battle and I'm looking for any advice or support I can get. 

Thank you! 
 

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BrianP's picture
Replies 12
Last reply 8/23/2016 - 2:41pm

Can anyone recommend a melanoma specialist at MDA.  Dr. Davies was recommended but can't get in to see him until Sept 2.  I can probably get in with someone else next week.  Is there someone else just as good or wait one more week for Dr. Davies?  Thanks for any recs.

Brian

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Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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Christine.P's picture
Replies 14
Last reply 8/23/2016 - 12:10pm

I finished my 3rd dose of the ipi/nivo combo 2-1/2 weeks ago and for the first week there was no change in my side effects. Then, a week in, I was clobbered - really severe nausea, loss of apetite to the point I can barely eat (I've lost 6 pounds in the last 2 weeks without trying), nearly continual stomach cramps in the diaphragm area, increased fatigue, and increased heartburn. The past couple of days I have noticed that I have been sneezing a lot and have a lot of mucus in my throat (a cold, perhaps?). 

I know that I need to eat and I sometimes feel hungry - until I acutally try to put food in my mouth. Most times I have to choke food down and can only manage about 5-6 bites at a time. I try to stay hydrated, but all beverages (water, juice, vitamin water, ginger ale, etc.) also make me feel like gagging. 

I emailed my doctor the full description so I wouldn't forget anyting or get distracted by quesitons or comments and they called and told me to come in that day (last Monday). So I did. I met with my nurse pracitioner who did not listen to anything I said and offered platitudes like, "Yep. This is what it's like!" and "These don't mean your cancer has spread." Um. Yes, I know that. I am not an idiot. When I told her that I had to choke food down, she told me what to do if I start choking! 

Needless to say, the whole visit was not just a waste of my time and completely disheartening, but I got no help. My 4th dose of the combo is this coming Wednesday and I am terriified of what might happen next. I know lots of other people have way worse sitiuations than I do, but I am mainly fighting this alone. I live in Rhode Island and my family is in Iowa. I have a couple of friends who help when I need them, but for the most part, I am alone. And this is just a lot to deal with alone. 

I guess I don't even now why I posted this. I just didn't want to feel alone, I guess. I know all the advice - chin up! keep fighting! etc., but sometimes an understanding ear is all I really need. So, thanks for listening. And if anyone has any advice for any of these symptoms, I would welcome any and all ideas. I just can't imagine feeling this crappy for multiple months without some kind of help. 

Christine P. 

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Capt jack's picture
Replies 5
Last reply 8/23/2016 - 10:02am

Hi everyone, New to site.  Looking for others on keytruda who are NED and made a decision to stop treatments and go with scans every three months.  My main side effect was extreme fatigue and vitilgo. Oncologist wants me to continue treatments into progression, but the fatigue renders me close to useless. There isn't much in the way of patients experiences to help with the decision.

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Alestrada88's picture
Replies 11
Last reply 8/23/2016 - 6:56am

Hey everyone, please bare with me here as I'm new to this site and in desperate need for advice! I'm 26 years old and a new mommy and newly diagnosed.

On August 1st, 2016, I was diagnosed with melanoma on my abdomen. My dermatologist told me over the phone and said the surgeon would be seeing me in 2-3 days. Surgeon sees me and said I was a stage 2 melanoma. Then fast forward a week I had a wide local excision of my abdomen and a sentinel node biopsy. In the node biopsy he removed 3 lymph nodes. Yesterday I found out 2 of the lymph nodes were completely negative and one lymph node had EIGHT melanocytes that the pathologist believes to be benign. Now after this information my oncologist stated I was a stage 1b.

howver, he is recommending a right lymph node dissection. Everything that I read said that it is an extensive surgery with a lot of recovery time and potential for lymphedema. My dr said he is 99% sure I do not need the dissection but "doesn't know what else to do". 

Also, he recommends no more kids but to wait at least 3 years if we are going to have anymore children. We wanted 4 babies and this news is hitting myself and my husband very hard.

 

Can an anyone offer any advice, words of encouragement, education, anything?!?!

Please!!

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Anonymous's picture
Replies 1
Last reply 8/23/2016 - 6:52am
Replies by: debwray

Interesting final paragraph that could change how remote Dr visits work ... would you like a 2nd opinion from an electronic "trusted advisor" aka Watson? yes, that Watson the compouter that played Jeopardy...

https://www.statnews.com/2016/08/19/ibm-watson-cancer-asia/

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Maureenk1's picture
Replies 3
Last reply 8/23/2016 - 6:29am
Replies by: debwray, Maureenk1

Hi!  I recently had surgery to remove a mole which was stage 2 ulcerated and 4.2mm thick behind my right knee.  I was referred to an oncologist who advised either Pegylated Interferon a-2b for 8 weeks or Interferon a-2b for 4 weeks.

So far I am not seeing the worth of either therapy based on a stage 2 diagnosis and the effects one can incurr.  Has anyone had these therapies for stage 2 melanoma?

If so how has the protacol impacted your daily life?

Thanks,

Maureen

 

 

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JohnA's picture
Replies 9
Last reply 8/22/2016 - 11:31pm

Hey folks-

My wife has had a partial response to iPi-nivo combo - all previous tumors in liver, bone, lungs and brain disappeared after 3 rounds, but 3 new brain mets appeared and have grown in the past 3 weeks. 

so, our onc at a major medical school hospital is recommending we meet with a radiation oncologist to discuss srs for the remaining 3 spots.

not knowing much about this srs field, is there variation in quality from place to place that we should consider? Is there a place or two considered to be outstanding at it?

we love our oncologist and picked him in part bc of his considerable experience and clinical judgement in treating met melanoma with iPi+nivo.  but need some advice about srs.

were also seeking second opinions from Sloan Kettering, Dana farber, and Johns Hopkins.

thanks!

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Jon M's picture
Replies 13
Last reply 8/22/2016 - 6:30pm

Hi my name Jon i was diagnosed on June 24 with stage IIb melanoma on my right leg. I had my wide excesion and a split thickness skin graft along with a SLNB done on August 4. I just recevied my pathology report yesterday and my margins are clear in my leg but the SLNB came back with cancer in it. So now i think this makes me stage III. I go back to the surgeon on Monday to talk about my options. From what i have read i dont know if i want to go through with a CLND. Some studies now say that it doesn't improve overal survival rate so my thoughts are why put myself through it. I am going to discuss treatment options with my surgeon and i have an appointment with an oncologist. I would like to know who has not done a CLND and what treatment they went with?

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