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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Coneflowers's picture
Replies 3
Last reply 1/4/2017 - 4:24pm
Replies by: Mat, debwray, Anonymous

Hello,

I have not posted here for awhile, or really to much. I am wondering if anyone has moved on to Ippy/Opdivo combo, after being on just Opdivo with or without stable results? My daughter has been stable with just the Opdivo. She has been on it for over a year now. She has scans soon, so we will know if this has changed.

It seems after talking with 3 other well know hospital's...that they all have a different opinion. Which does not make already difficult decisions any easier.

Thank you

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Cathy M's picture
Replies 3
Last reply 1/5/2017 - 1:59pm
Replies by: Anonymous, Cathy M, Charlie S

I haven't posted for awhile because I didnt want to post negatively on a board that provides so much good info for people battling melanoma.

My husband is battling an explosion of melanoma including the frontal and parietal lobes of the brain and has gone on hospice 11-23-16. With his current condition he gets confused easily and must stay pretty much on a single track mindset, thinking one thing at a time. He gets frustrated and irritated with anything else to the point that he is withdrawing and starting to avoid conversation with others...especially when others are aware of his situation but choose to ignore it. He asked me this evening "How can I get people to understand what I'm dealing with?" I have no answers. It's easy for me to say "Just ignore them" but that answer is really no help. I can talk to the social worker at hospice or the cancer center about it but I wondered if anyone has any links for caregiver reading in a hospice situation they might share.

Cathy

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_Paul_'s picture
Replies 8
Last reply 1/3/2017 - 12:55pm
Replies by: Spl25, Ed Williams, Anonymous, adriana cooper, Polymath, Bubbles

Hey Everybody,

So my TIL ended after only 3 bags of IL-2, and the day after that I got discharged from the hospital. However, my white blood cells are still depleted from the chemo, as they say, neutropenic. So I was not allowed to go home since it's too far from the hospital, just in case something bad happened.

I managed to get in two days at a special cancer hotel, which was bliss. Last night I had some killer Thai green curry.

But I felt a little warm at one point and my temperature was 100.9. According to protocol, I called my team and next thing I'm back in the hospital because of febrile neutropenia. But this is a walk in the park - just lolligagging around - no chemo, no TIL, just antibiotics.

I'm a little impatient, because they would not let me sleep last night, and I am tired today. I know I need to be scoping out my next plan of action but it's just too much for me today. All these sub-q's on my head are really getting annoying as they grow.

Tomorrow is another day and hopefully I can get a better night's sleep tonight.

- Paul

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/3/2017 - 7:28am
Replies by: BillMFl, jennunicorn

Hello Everyone, 

I have a quick question. 

So I was recently diagnosed with a Stage 1a Melanoma at 0.23 mm in thickness, but a shave biopsy was performed. When they got the first biopsy, it showed negative deep margins but positive peripheral margins. I have gone on a lot of forums and articles reading that a shave biopsy isn't accurate for staging, but because i got negative deep margins in my first biopsy, it shouldn't have mattered correct? The original diagnoses I had of 0.23 mm would still stand correct even even though it was a shave biopsy. Please let me know your thoughts thank you.

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Shaneswife's picture
Replies 3
Last reply 1/6/2017 - 7:45am
Replies by: MaPerny, Shaneswife, debwray

There is such a nasty viral virus going around and of course poor hubby caught it. So a visit to the ER was to be had. Chest xray to rule out pnemonia was done and it's just bronchitis. However we discovered on xray that Shane has bone Mets in the ribs now. I'm going to push with the doctor for a pet scan as he hasn't had one in a year. His last CT just 3 weeks ago and there were no bone Mets then. So frustrating. But he starts dabrafenib and tramentinib on Wednesday so hopefully he can be spared from any developing bone pain.

Janis

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Eileensulliv's picture
Replies 5
Last reply 1/3/2017 - 12:21pm

Good morning and happy new year! I have not posted in several months, but do read posts from time to time. I figured it was probably time for an update...

I was diagnosed Stage IV in January 2015, which was a recurrence from my first time with melanoma in 2006, Stage I. In February 2015 I had surgery to remove the tumor from my back, and started the ipi/nivo trial at John's Hopkins. I could only tolerate one dose of the combo, and was hospitalized a few times due to what we now know is my new allergy to Ct scan contrast (never had an allergy in my life before IPi/nivo, now have a few new allergies). I continued on just nivo after a short break from the first dose of the combo, and had some side effects, all were manageable. Scan in December 2015 showed NED, but the next scan in February 2016 showed new nodules in my right lung again. Continued on nivo and still getting nivo every other week presently. 

In February 2016 my blood sugar went completely wacky, and I was diagnosed with type II diabetes. My oncologist said I was probably on my way to diabetes on my own (at this point I was the heaviest I had ever been, I had stopped exercising, and had some unhealthy eating/drinking habits) but that the treatments might have just hurled me into it. My endochronoligist agreed, and got me started on twice per day insulin shots. That was a wake up call for me, and I started to make some lifestyle changes. Basically, watching what I eat and lots of exercise has helped me to lost close to 50 pounds since March 2016, and I am now transitioning from insulin shots to metformin pills! And hopefully someday I'll be able to even get off those! It is my goal to be able to actually RUN the Miles for Melanoma 5k in DC, which is usually in May... fingers crossed!

Since I have the allergy to Ct scan contrast, we have switched to just doing PET scans on me for the time being. My latest PET in October showed NO sign of disease, to which I breathed a giant sigh of relief! My next scan is on January 30th, and I'll get the results on my 41st birthday, February 2nd... nothing but positive vibes here! If this next scan is still NED, I will get to finish nivo treatments in March, completing two full years of treatments. The thought of stopping treatments and not seeing my doctor and nurses every other week is somewhat terrifying, but of course also a great relief. There are mixed emotions, for sure, and I think that is what I am struggling with the most now. 

I am (somewhat) cautiously optimistic, and have started making plans for my next steps in life. I'd like to move back to Chicago, and have even been looking into the possibility of having a baby! The docs at Hopkins said once I finish treatments they can get me into their fertility clinic to see if it's even possible for me now. Again, fingers crossed!

Thats about it for now, sorry for the lengthy update! My prayers are with all of you. I have made some wonderful friends through this board and the MRF, and am looking forward to seeing some of you in 2017! 

 

With hope,

Eileen

Eileen 

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stevenallenschwartz's picture
Replies 9
Last reply 1/9/2017 - 5:45pm

I was advised  January 2016 that I had stage 3c melonoma. They surgically removed the tumor from the back of my arm and 10 lymph nodes from my arm pit. I than had 4 infusions of yervoy. I had 1 petscan in July of 2016 that was clean and my recent petscan in December 2016 showed the return to my lungs and armpit. Dr. immediately put me on Keytruda and so far I have had 1 infusion. No side effects yet and going for my 2nd infusion next week? 

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Nicklindner's picture
Replies 5
Last reply 1/3/2017 - 12:18pm

Happy new year every one. I started Ipi/nivo on 12/15 and go in for my second dose on Thursday. I have been pretty nauseous the last few days and hardly any appetite.  Is this similar to the rash in that it is only here for a short while? After the rash nearly took over my whole body now it is almost entirely gone. 

Anyone here have these symptoms after their first dose?  Doctor gave me anti-nausea meds but they don't really help. I am trying to force myself to eat but am still dropping weight too fast. Might go in today to get blood work done - Doc wants to see what is going on. Hoping to stay on this combo....

thanks again for any insight. You all are incredible 

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Aloha14's picture
Replies 7
Last reply 1/3/2017 - 4:34pm

Has anyone been to one, and did it help?

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snow white's picture
Replies 2
Last reply 1/3/2017 - 6:35pm
Replies by: snow white, debwray

I just wanted to make sure that all knew about Vince.  Judy wrote at the bottom of her previous post, that Vince passed away today at 2:25. My  heart breaks for her. :(

 

Judy-Please know that I am keeping you in my thoughts and am glad to  know that you are surrounded by friends and family to lift you up. You did a fantastic job taking care of your dear Vince.  Take Care.

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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Nick C's picture
Replies 3
Last reply 1/2/2017 - 11:25am
Replies by: Patrisa, Nick C

After doing observation for 1 1/2 years, there is clinical and radiographic evidence of progression. Although I am asystematic and there is no evidence of visceral involvement, I am getting close to "going over the cliff." I feel fortunate that I have more options than I did when it came back. After going thru all the options, we agreed that pembro would be the best option. Hoping the side effects don't appear or are mild. Never been on meds in my entire life, so this feels odd.

Cancer is not new to my wife and me. She was diagnosed with breast cancer in 2007; mine was found in 2011; she had a rare form of ueterus cancer in 2013; mine came back in 2015. Once told a doctor the we were just giving it back and forth to each other...the look on his face when he thought I was serious...priceless.

I have been following posts and I know that there are some of you who are in serious situations. I admire your "never give up" attitudes. You are all in my thoughts and prayers.

 

 


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Anonymous's picture
Anonymous
Replies 2
Last reply 1/1/2017 - 9:09pm
Replies by: Aloha14, jennunicorn

Happy New year! I just had my WLE and SNB on my right thigh on the 29th.They removed 2 groin lymph nodes so just waiting on those results. Over the last couple of days i noticed what I think is a swollen lymph node underneath my left arm pit.I have had some muscle weakness down my upper right arm that i thought was a pulled muscle from sleeping on it wrong over the last few weeks. I am freaking out! Any advice?

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user9999's picture
Replies 14
Last reply 1/3/2017 - 1:55pm

Hello. Loved one recently had a S. node biopsy that showed there is cancer in 3 of the 4 nodes. I think there was not cancer in the one that was farthest away from the original site. 

The doctors didin't give us much more information when they called with the results other than to schedule another appointment in 2 weeks. 

I understand they will do a full body scan either then or soon after. I think that means that we do not yet have a full diagnosis with accurate staging, correct? 

Is there a way to know how serious this is at this point, or not until after the next appointment? 

Can anyone give insight on what all this means and what is likely to happen next? 

 

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MichelleRHG's picture
Replies 20
Last reply 1/2/2017 - 7:38pm

I'm having my 1st infusion of ipi (10 mg) tomorrow and am scared to death. Am stage 3b and drew this arm of trial. Was hoping for pembro.

Any advice or encouragement?

Also, my PET scan was clear last week except for my groin where I had lymph nodes out Nov. 9th. Onc won't discuss with me until tomorrow but has anyone else had experience with inflammation from surgery lighting up on scan?

Hoping everyone has a blessed year.

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Terrified's picture
Replies 35
Last reply 1/3/2017 - 8:46pm

To the valiant warriors I have met here..

 

Your courage and strength is amazing. Your help to your fellow sufferers is so comforting. 

Vince's disease is too aggressive. Failed BRAF inhibitors after three weeks new sub -q met, new bowel mets and progression of lung and brain met. Did craniotomy after intracerebral bleed and swelling did not respond to steroids. Had 700 cc tapped from pleural effusions and shortness of breath was better for a few days. Was walking in the halls with a cane and able to do a few steps.Went home and 48 hours later readmitted for renal failure , LDH 3000 and increasing abdominal distiention, worsenng shortness of breath and inability to ambulate due to shortness of breath and pain. Was hopeful distension was from ascites and could be drained but is just tumor. Got keytruda but no time for it to work. His oncologist as well as the two other melanoma oncologist say this degree of aggression is rare.

Diganosed Stage 4 on November 12,2016. Now moving to hospice. He is still sweet and polite and still coherent. I am broken.

Judy

 

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