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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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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GAngel's picture
Replies 6
Last reply 8/22/2016 - 9:22am
Replies by: Jon M, GAngel, SABKLYN, Casitas1

Hello to all! It has been a while since I have posted here although I do check in from time to time to see how everyone is doing. We have been busy with living life and our biggest struggle has been letting go of the fear of recurrence.  Today Rudy had his 4 month check up and PET/CT scan which revealed that he remains NED! For those of you new to this site you can read my profile for details of my husbands melanoma journey. A quick summary is that he was diagnosed in February 2013 with stage 4 nodular malignant melanoma.  Originating from a mole on his lower left leg with metastases to his liver (15+ tumors) and his left groin lymph node. Treatment started with Zelboraf (which was working but he had severe side effects) and then when the Dabrafinib/Mekinist combo became available he started the combo and eventually began an intermittent dosage schedule and by November of 2013 he showed no evidence of disease.  

Rudy took a 6 month break recently from the combo with no return of disease as the scan today reveals! Amazing! I am compelled to share with you that since the first week following his diagnosis he began taking cannabis oil in the recommended amount to cure cancer and remains to this day taking it at a very low dosage.  That is the only medication/treatment that he has steadily taken since being diagnosed.  I know it was a gamble to go off of the combo and his oncologist did not support him doing it but it was something he felt he had to do. I think mainly it was for two reasons the first being a quality of life issue and the second being he wanted to know what role, if any, the oil played in his success at beating melanoma thus far. We realize that there is no science to his study so to speak (most would say only stupidity, lol) but he was told that if he were to stop taking the combo that melanoma would come back immediately and with a vengeance.  Is six months enough time to give it to come back? According to his doctor for most people the answer is yes. Rudy is not like most people according to his oncologist.

I should also note that Rudy's oncologist was very leery of the cannabis oil and its effect on cancer in the beginning of his treatment, however, at every appointment he and I shared information on latest treatments which included cannabis oil and he now advises me that a huge percentage of his patients are taking the oil as additional treatment to conventional treatment.  I believe that one day soon there will be clinical trials being done in all major cancer centers on cannabis oil as a cancer treatment as the positive results of it curing cancer can no longer be denied and his doctor now agrees with that sentiment. Go figure! I have no reason to give false hope to anyone and I just want to give you good information and maybe some hope because it  worked for my husband.  It may not work for everyone but it is worth trying as there are no toxic side effects at all and it can be taken in conjunction with most conventional treatments. My best advice is to be open minded and combine both conventional and alternative treatments along with a fighting spirit, full of hope and lots of love, and most importantly to us is faith in a higher power and knowing that our God is in control of it all.  Good luck to you all on your journey and know that I pray for you all! Blessings!

Gina (wife to Rudy, melanoma warrior winning the battle)

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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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 2
Last reply 8/20/2016 - 12:54am
Replies by: kylez, jennunicorn

Anyone here familiar with any melanoma doctors? I'm looking for a second (and maybe third) opinion!

Thanks in advance!!!

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Julie in SoCal's picture
Replies 7
Last reply 8/22/2016 - 6:25pm

Greetings friends!!

It's been awhile since I've posted anything - mostly because nothing had changed.  I was doing Pembro, (I've done 21 bags) and it was working! Up until now, it has taken care of all of the peskey little in-transit buggers.  It was so cool to watch / feel the little suckers melt and go away.  I figured Pembro was winning the mel battle.  But in this past month I've had another in-transit pop up.  So I don't know what to think. Dang Mel! 

I have scans again on Monday.  It's been 6 months since my last scan, so there' s a possibility of change (also a possibility that there's no change- but somehow that's not in the forefront of my mind). I'll talk with my Rock Star Doc and see what he has to say, but waiting and watching and wondering if I've failed another treatment take some active doing.  

So anyway, this is how it is. I appreciate the comfort and wisdom of the community here.  There's nothing like it.

Shalom,

Julie

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

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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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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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dmturner's picture
Replies 9
Last reply 8/23/2016 - 5:24pm

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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gaby's picture
Replies 2
Last reply 8/19/2016 - 6:42pm
Replies by: dmturner, mjanssentx

You always gave me their support in difficult times so today I want to share this good news. Today we visited the oncologist with the result of SCAN, and everything is clean !! Thankfully, my husband  is NED since  August 15, 2012

 

We live an  emotional roller coaster. From diagnosis in June 2012  with  melanoma and kidney  cancer my husband had 38 years, everything was very difficult, but he's a fighter, and decided to make interferon for two years. He had several questionable PET and suffer much distress but thank God the beast yet to return ....

 

Greetings and thanks for the support.

 

gaby

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/20/2016 - 7:34am
Replies by: debwray, Bubbles, Linny, Anonymous, JuTMSY4

Hello. I had a lymph node disection done on my right groin on Monday. They had to take both the superficial and deep nodes out. I've now developed a case of lymphadema in my scrotum. I want to get compression garments but don't know where to look. I'm in Canada. Also should I see the surgeon about the swelling? I'm not sure there is anything he can do.

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Patina's picture
Replies 6
Last reply 8/20/2016 - 8:23am

It's three month shy of 3 years, but my Mom, at 80, just got the approval to get her commercial drivers license back!  She is ecstatic!

Her doctor's all call her a miracle considering the stage and number of brain mets, which totaled 28, including a craniotomy for a recurrence. She has had no cognitive issues and is certainly A-Typical because of her outcomes thus far and her remarkable strength and resilience. - She acts like a 50 or 60 year old and has been dying to get back to driving for a local tour coach company she use to work for. - Staying home or taking it easy it too boring for her!

Hopefully one day everyone will have these results. In the meantime, this gives others in this situation some good news from a Stage IV survivor.

History:

At 77 she was diagnosed with Stage IV and then brain mets, which had been missed!?! She had gamma knife radiation for 8 of 9 brain mets, they missed one !?!, followed by Yervoy 4 days later. She had amazing results, are related to the abscopal effect from gamma knife radiation. However, still had to deal with 17 more brain mets 4 months later with gamma knife treatment again, a reoccurrence about 16 months later which needed a craniotomy and then another brain met 1 month later. She's been on Keytruda for 1 treatment shy of one year, and they can't find any signs of cancer in her brain and most of the remnants from treatment are gone. - Her last CT scan showed 2 or 3 small smudges in internal organs... Everything else is gone and other than the brain mets nothing else has ever shown up.

My Mom is being treated at USC in Los Angeles. Her team has been awesome and I doubt that anyone, but Dr. Eric Chang and his team, could have done a better job with treating her brain mets without any cognitive issues to date. - He was called in 4 months AFTER her first gamma knife treatment because we were told she had 1 new brain met.  We found out that not only had the first team MISSED a brain met, but that she didn't have just 1 new brain met, but at minimum 5 in her prefrontal alone. We had been told to watch and wait by the first team and I can't imagine what would have happened if we had done that. With certainty my Mom would be in the same position now if we had followed those instructions.  - It pays to get second and even third opinions.

 

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julia80211's picture
Replies 3
Last reply 8/22/2016 - 5:23pm
Replies by: debwray, julia80211

Hello-

I've seen some others post their biospy results so I'm hoping that someone can take a look at mine too.  

 

A little background: A friend of mine passed away from Melanoma last fall.  She asked all her friends to get skin checks, so I did.  I had one mole that had changed but nothing that seemed concerning as it had always been skin color.  Then part of it develped pigment.  Then the pigment formed a dark line in the mole, so I made an appointment.  She drilled how important the "E" is when looking at your moles.  The PCP said "It's probably nothing" but referred me.  The derm thought it was nothing but took the biopsy to put my mind at ease.  Everything came back fine in March.  

Once the biopsy area healed a tiny dark spot showed up and grew rather quickly from a tiny dot to a 3mm spot in the matter of a few weeks.  I was in for something else and the derm saw it and asked so I recounted what happened.  At that point they decided to take a punch biopsy.  

I got a call last Monday.  The derm said that the biospy came back with "severe atypia" and she said the pathologists couldn't decide if it was atypical or melanoma.  So I have a excision scheduled for Sept. 2nd.  From reading other path reports on here, I don't seem to have some of the key measurements though. :( 

I just picked up a copy of the report today to try to put my mind at ease.  The whole "maybe it is, maybe it isn't" made me nervous.  

On the tissue exam part it reads "erthematous papule x 6 hours, reactive erthema vs erthema multiforme vs bullous arthropodB- hyperpigmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

It was reviewed by 2 pathologists.  The first one said "recurrent junctional nevus with architectural disorder and severe cytologic atypica, surgical margin free of involvement."  Sounds good, I think?   The report says thsi person is a pathologist but doesn't specify dermapathologist. Second pathologist (who is specified as a dermapathologist) says: "hyperpitmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

Normally, I wouldn't worry but given how quickly the spot grew at the point of the shave biopsy is making me a little nervous.  Any thoughts? 

 

Thank you!

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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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Ajwells's picture
Replies 3
Last reply 8/20/2016 - 9:20pm

Sorry for the TMI, first of all. I'm not all about talking about my poop

i had my 2nd ipi treatment yesterday. I woke up in the middle of the night with some abdominal cramping. I drank some pepto and went back to bed. This morning after another couple bouts of cramping, I had a mainly normal BM, but there was some mucus in it. Now I had another moment of cramping with the feeling of urgency, but I got nothing but a tiny bit of mucus. My doc said to call if I have more than 3 loose stools in 24 hours. I was just wondering if there is anything I can do to prevent this from turning in to something serious?  I take a probiotic every morning. But I'm afraid of taking too much pepto or Imodium because I have IBS with constipation. Do I risk the constipation to avoid the diarrhea?  Or just bite the bullet and call my nurse and give her a forewarning? 

Thanks for any advise. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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Duffy's Mom's picture
Replies 4
Last reply 8/19/2016 - 10:07am

I think this forum is great. The support and care is wonderful to read and so reassuring. Many of the folks here are dealing with later stages than mine. My heart goes out to you. This is a scary diagnosis.

I have been diagnosed with stage 1b. My new mission is to learn as much as I can about going forward with as much wisdom on sun safety and living a full life as possible.

I read in one of the threads here a suggestion that "Janner has a forum for Stages 1 & 2" that would be helpful. Can anyone tell me how to find that forum?

Blessings to all involved in dealing with melanoma.

Thanks

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