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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snow white's picture
Replies 11
Last reply 1/5/2017 - 4:11pm

I can't stop thinking about him.  Anyone have any news at all?  

Hope you are all hanging in there!

xo Jen

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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jennunicorn's picture
Replies 23
Last reply 1/4/2017 - 8:30pm

I will first say that I will be calling my onc's office in the morning if I still feel this way, and will email if I feel better but still want to let them know.

Just wondering for others who have been on or are on the Ipi/Nivo combo and have experienced low grade fever, body aches, and chills.... did you find a cause, if so what was it? How long did it last?

I had my 4th dose on 12/29 and have never felt this before. Appetite was gone yesterday and today, I've had some on and off appetite loss throughout the combo, so that part is not new. Now I have a low grade fever, 99.2 last time I checked and my body aches pretty bad and chills are not fun either. I got a flu shot a couple of months ago, so I don't think I have the flu.

My labs last week showed very slightly high white blood cell count and slight anemia. Onc wasn't concerned. She asked me if I had been feeling sick and I had not.. until now.. that was 5 days ago.

Any insight would be great, thanks!

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2017 - 2:07pm
Replies by: Hukill, Everymoment, Sophietx, Janner, Anonymous

Hello all,

i was recently diagnosed with stage 1A melanoma at

0.3 mm thickness 

mitotic rate of 0 

no microlesions

no lymphatic or vascular invasion 

with regression present 

I only seem to find so many negative things about low risk lesions spreading and I'm so scared this lesion is going to spread. I just need to hear some positives about people that had small lesions taken out and are not having anymore issues years down the road. I feel as if I'm heading for something that I can't stop. Any answers would be appreciated thank you..

 

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Buddy0513's picture
Replies 3
Last reply 1/3/2017 - 8:19pm

Hello all,

I haven't been on here lately to post, just been reading when I have time, but I thought I would give an update.

My mom completed all 4 infusions of the ipi/nivo combo, after some delay of the last treatment due to side effects. She has been on prednoisine (spelling..??) for a few months now. She is swollen to the point where she is in pain and can barely put shoes on. Her rash has been to the point where it basically overtook her entire body and she had such itchiness that even the Benadryl wasn't working. They upped her dose of the steroid multiple times (it was over 70mg twice a day at one point). She stopped the carbo/taxol about 2 months ago. After the first infusion of the chemo, about a week later she had lost about 10 lbs. Her stomach (the primary location of the tumor on her ovary which was grapefruit sized), had basically gone back down to normal size and she could now function normally. All of us, including the Dr, cannot believe how fast this happened. After completing the 4th dose, she just had her first dose of the nivo for the maintainence phase of the treatment.

No scans have been done yet. My only assumption as to why is the primary tumor, which I think was the only tumor, we know had shrunk after the chemo/immunotherapy combo. The Dr. did mention scans in the new year and having her on a scan schedule for however long after that. She is only currently approved for the nivo period until mid-March, so I am unsure if that will be extended or not.

I had to return to school since my program is so competitive if I take anymore time off I may not be re-admitted. I am nervous to leave my mom alone, but she has been able to drive and function on her own ever since the dang tumor shrunk anyway! The Dr kept telling me not to worry and mom would be fine. Nurses keep saying they have had a lot of luck with the ipi/nivo treatment, especially with side effects similar to my mom, but I guess it is in my sole duty to continue to worry! 

I have been following the site from time to time, I continue to pray for all of you on this site! My neighbors as well who are good friends of my mom have also been keeping everyone who is diagnosed in their prayers (I would share stories about this site frequently to them), especially since the one neighbors son has been battling lung cancer this past year. 

I also wanted to say thank you to those who have followed my moms story and have been supportive along the way. This website has been a lifesaver for me and her, especially since we had no idea where to go once she was diagnosed. Through this site and learning about melanoma specialists, along with speaking with many who area dealing/dealt with melanoma, saved her life since our current Dr said she would have been gone 12 weeks ago. (The first hospital we had been to basically didn't deal with melanoma and was going to give her the wrong treatment). She ended up making it to her birthday and to the new year. Now we are planning for her to visit me over my break. As I cry and type this I just wanted to say thank you to all once again. Hopefully the new year and her scans will bring us good news and I hope the new year brings good news to all of you who are fighting as well.

Melissa

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/5/2017 - 4:49pm

In July 2016 I was diagnosed with 7 mets in my lungs and started ipi/nivo combo. I had a scan on 12/29/2016 and got the results yesterday. No new disease and the chest scan had "near complete resolution". I started the maintanace phase on 12/23 so I get the combo every 90 days until 10/2018. I hope the next scan reads complete resolution.

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Jgerig84's picture
Replies 4
Last reply 1/7/2017 - 9:26am
Replies by: Jgerig84, Janner

I recently had a biopsy done of a small (3mm) mole on my calf. The pathology came back as "dysplastic nevus with mild atypica that extends to both  peripheral margins". My derm told

me I could "wait and watch for repigmentation" or choose to have more taken in an effort to get clean margins. I have no personal history with Melanoma but my mother died of melanoma when I was 4 years old so it's a point of anxiety for me. I decided to have more taken. I had my appt this morning and the surgeon seemed to have terrible bedside manner... I was asking how large the scar would be and I think her thought I was getting cold feet so he started to tell me things that were scary to me. He told me that the re-excision wasn't just to "get all the cells" but to officially rule out melanoma. He told me that this could still be melanoma and that there is no way to know for sure until they get all the cells. He said that the pathologist graded it as "mild" but he could've been wrong or there could have been melanoma that extended past the actual mole that he couldn't see. He then preceded to tell me that he has worked on patients who were originally told "mild atypical" and were upgraded to melanoma after re-excision. I was freaking out so of course I let him do it. He did a punch biopsy this time and was saying he was sure he got all the cells. As he was cleaning me up he started telling me that the chances of a "mild" coming back after re-excision as melanoma was probably less than 1%.... I don't understand why he made it seem so scared prior to excision and then basically told me chances were low afterwards. Now, the damage has been done and I'm terrified.... please help.

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_Paul_'s picture
Replies 23
Last reply 1/4/2017 - 5:01pm

Even though the doctors are telling me there's still some hope that the TIL might work I'm looking at the reality of the numbers. I only received a yield of 15 billion cells, which is only 1/10 or less of the normal. I was only receive able to receive three bags of IL-2 out of 14. This hospital has never stopped before five.

The doctors haven't told me any decent survival numbers for a long time. I'm insisting this morning that they come and talk to me. I need them to tell me when things are going to happen like liver failure etc. and a realistic expectation of when I'm going die if the IL-2 fails.

I have to wait six weeks for the next scan. Frankly I am not happy to just sit tight and wait and watch for six weeks. That's a lot of valuable time.

So here are my thoughts about my next Plan B. It seems to me that my cancer has mutated such that it is no longer susceptible to the two big pathways that everybody has been targeting. Namely CTLA-4 and PD-1. My cancer really seemed to go nuts while on the  Atezolizumab and OX-40 trial, so I'm not interested in anymore OX-40.

I remember watching a video from Dr. Hamid that Ed posted a link to, talking about a treatment they had for people with heavily treated tumors but I cannot find it.

So my melanoma family, what do you all think?

- Paul

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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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