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.

Expand/ Collapse Topic
 
Replies By
View Topic

If it's Mondy in June....it is time for more ASCO...so here you go:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-radiation-plus-ipi-plus-cd47.html   

Where would ratties be without their mousies????  Have a great day.  Celeste

 

Login or register to post replies.

Scooby123's picture
Replies 6
Last reply 6/13/2017 - 8:04pm

Hi all, i recent put on my pet results, from starting ipp in 2015 where my cancer was which was liver , lungs, heart, and probs dots around. Ippi shrunk my tumours all over by 50 %. so plan was watch and wait see how long i respond to it. In 2016 i had a 5mm brain met which i was told at the time probably ippi did not stop it in track. Had Gamma Knife for that and thank god clear scan since 2016 on brain.

 

Had a pet scan which showed every where my cancer was prior starting ippi no intake on scan which is good news. But lymph nodes in chest 2 nodes up on intake. i am planned to have it biopsy on the nodes to see if mel and if yes Radiopherapy we are looking at to treat nodes. My consultant does not want to give me immunotherapy due i think stable eles where and just new nodes which lit up if mel.

My scans from starting treatment never showed any lymph nodes up in chest , so from starting ippi i have progressed but because the areas when had ippi was treated and not changed at all thats why he does not want to give treatment than radiotherapy for nodes.

Do you agree or should i push for immunotherapy or will radiotherapy kill the cancer in nodes. I just dont want to keep getting new areas each year lit up and then hard to control it. Part of me understands but then part of me does not

Please can i have your advice if had this situation or what would you guys do .

Thanks Guys

Scooby x

Login or register to post replies.

mooseman1824's picture
Replies 5
Last reply 6/13/2017 - 6:57pm

All,
I just signed up for this community because right now I am in a bit of shock. I was just diagnosed on Wednesday with Melanoma in situ, which I guess is the best-case scenario. At the advise of my father who was diagnosed with Stage 4 Non-Hodgkin’s lymphoma in 2014, I have tried to limit my Google searches. Luckily my father is in remission, so even though he hasn't had melanoma, he has went through the shock of being diagnosed with cancer. He said that the biggest mistake that he made when he was first diagnosed was spending hours upon hours online reading and researching. At any rate, here is what I’ve went through the past few weeks...

My wife was worried about a spot on my upper thigh, and she wanted me to get it checked out. I told her not to worry about it because I’ve had it for as long as I remember. She said that she knew I had it, but she thought it looked different. I got into see a doctor the next day, which was May 26th (my doctor was out so I saw someone else). The doctor said she was very concerned about the spot, and that she thought it could be melanoma. She really wanted me to see a dermatologist because of the number of moles that I have on my back. The dermatologist in their building had a 3-4 month wait time, and she said it couldn’t wait that long so she could do it in 3 weeks which was her next available. Maybe this is standard procedure, but I don’t feel like a doctor should say that they fear you have melanoma, but you have to wait 3 weeks for the biopsy. As soon as I got home and spoke with my wife we both agreed that I needed to try to see someone sooner. I started calling around and I got lucky after a few calls as this dermatologist had an opening on May 30th. I went to my appointment and I REALLY liked this doctor. He spent a lot of time with me, and answered all of my questions. He did a screening of my body, and he agreed that the spot should have a biopsy along with one on my back. That said, he said he really didn’t thing the spot on my leg was melanoma. He told me that they would call me in 7-10 days with the results, and if all went well he would see me in a year for a follow up. Well, this past Wednesday the doctor called me and told me the one on my back was dysplastic nevi, and that he would like to do a wide excision just to be safe. He then told me that the spot on my leg was moderate melanoma in situ, and that I would also need to do a wide excision around that to get clear margins. He was very comforting, and stayed on the phone with me for well over 30 minutes. He knew how my wife pushed me to get it checked, and told me to give her a big hug because she likely saved my life (because I had no intentions of ever getting the spot checked out). My surgery is scheduled for June 20th, which I will be glad when that day is here.

So I am happy with this doctor and everything that he has done. I feel lucky that we caught it early, but my worrying is coming from the fact that he didn’t think the one on my leg was melanoma so what if he is wrong about one of the others? I have probably around 200+ moles on my back and chest alone. To his credit, he did have it biopsied. There are a few that I don’t like because one has gotten larger and darker over time, and then there is another that is a newer one that has an irregular shape. I discussed those with my dermatologist, but he wasn’t concerned about those. So I was wondering what you guys would do in my situation? I’ve read that there are non-invasive ways such as the woods lamp that allow for doctors to look for suspicious spots. I guess it’s not practical to test every mole on my body, but it would be nice if there is another way to confirm that there aren’t any other moles that need to be biopsied. I’ve also thought about going to another dermatologist just to get a second opinion and confirm that no other spots should be checked. I know my situation isn’t nearly as serious as most people on here, but has had a bit impact on me. I figured I was to young to have cancer (I'm 32), and figured since I didn’t tan it was very unlikely that I had skin cancer. Since I was diagnosed, I found out that my grandpa had melanoma before he had passed away from lung cancer, my uncle had it as well, and my cousin had melanoma in 2004, and in 2016 had basal and squamous cell cancer. Any advise on what I can do to ease my mind in respect to monitoring my moles, and ensuring the dermatologist didn’t miss anything would be greatly appreciated.

Thanks,
BD

Login or register to post replies.

Newmanbell's picture
Replies 9
Last reply 6/16/2017 - 1:52pm

I see so much on survival rates for each stage, so here is a question, is it truly possible for my husband to stay at say Stage 3 and never progress to Stage 4? Has any one stayed at the same stage for many many years?

Donna

Login or register to post replies.

Patrisa's picture
Replies 8
Last reply 6/17/2017 - 5:11pm

Dear Julie,

I have been thinking of you, hope everything is ok...

Take care,

Patrisa

Login or register to post replies.

smyers5015's picture
Replies 3
Last reply 6/12/2017 - 11:55am

Hi,

I'm a 52yr old male, and In April I was diagnosed with metastatic melanoma, a 5.1cm tumor on one of my adrenal glands and a small 13mm tumor on the right lower lobe of my lung.  They were unable to find the primary.  Last week I received my 2nd cycle of yervoy/opdivo and have few lasting side affects... mostly fatigue but occasionally a fever or sore muscles/joints.  Although I am letting my oncologist suggest the course of action, I know there are things I can do to try and help myself, such as taking the correct vitamins and supplements to help my body fight the tumors.  Currently I'm taking a men's multi, 1000iu D3, Tumeric, and Resveratrol.  Are there any suggestions out there that could/would make this regimine more theraputic?

 

Thanks!

Login or register to post replies.

Nemesis's picture
Replies 8
Last reply 6/13/2017 - 12:22am
Replies by: miaka618, Janner, Nemesis, UBContributor, Anonymous

Summer finally came and, as such, I have  started to apply sun screen (spf 100) to my exposed areas every two hours. Despite that, and despite trying to stay away from the sun as much as possible, my cheeks have reddened today.

 What am I doing wrong? Should I apply more often? Only come out at night? Cover myself completely?

 

Login or register to post replies.

Bubbles's picture
Replies 1
Last reply 6/10/2017 - 2:06pm
Replies by: jahendry12

I've been yelling about the merits of radiation WITH immunotherapy for a long time.  Now, there's this:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-hypofractionated-radiotherapy.html  

Wishing you all a great weekend.  Celeste

Login or register to post replies.

MustangLT's picture
Replies 10
Last reply 6/12/2017 - 11:48am

I started the clinical trial S1404 Randomized Comparing Ipilimumab 10mg to Pembrolizumab. I got randomized to the ipi arm of the study. I had my first infusion on June 19th. About 4 days later I started breaking out in an itchy rash, initially on my hands and abdomen. It got worse and I was put on a 5 day regimen of prednisolone. It stopped the itching until I went off, about 5 days later went back on another dose of pred for 5 days and my next treatment has been postponed.  I know itching and rash are not the end of the world but living with constant itching is very maddening and crazy making! The rash is now over my back, arms, scalp, arms..
I am now trying to decide if I should try another treatment and itch for another month or more or go back to watch and wait! Have also had touches of diarrhea but nothing overwhelming. I'm really on the fence right now, thinking I should give it another chance, then again, not crazy about the risk potential. I'm in very good health otherwise!

My original diagnosis was a malignant mole in the center of my back, removed 7 years ago. 2 years ago, left axillary node dissection with 2 positive nodes, this February, right side axillary node removal, 2 positive nodes. Currently NED which qualified me for the clinical trial.

Any thoughts?

Lauralea

Login or register to post replies.

AliCat61's picture
Replies 6
Last reply 6/10/2017 - 1:17pm

We have encouraging news. Pet scan from yesterday shows that tumor in parotid gland is no longer there!!! The nodule on left lower lobe of lung that was 1.8 cm in January is now 1.3, so it is responding, just not as quickly as the other one.
There is a bit of concern about a left pleural effusion (excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs) that is slightly increased in size from prior chest ct on 5/22/2017. There are also "increased reticular opacities in the posterior right lung base" that are concerning, but that area did not "light up" so it's probably just related to his recent lengthy bout with pnemonia.  An area near the right scapula (shoulder blade) did "light up" and a "small metastatic lesion can not be excluded".  With that one, we will just take a wait and watch approach and see what his next PET SCAN looks like. He will probably have them every 3 months for awhile.
He did not receive an infusion of the Yervoy, as his doctor is sending him for an echocardiogram to determine what's going on with heart & lungs first. We will see him again next Friday on the 16th after he has results of echocardiogram to discuss next steps.
It is "possible", depending on what they find out about heart/lung issues and causes, that he may get the last dose of the combo treatment. I say possible because unless they convince ME that his heart & lung issues aren't related to the treatment, I vote for not getting it. Our oncologist was at a conference last week and the Nurse Practioner and Dr. Meshad both stated that if the heart and lung issues are a result of the Opdivo/Yervoy infusions that a 4th infusion could cause lasting and irreversible damage. That is not a risk that I am willing to take and hopefully it not one that Roy is willing to take either.  Many people aren't able to complete the full 4 doses of Opdivo/Yervoy due to side effects. It's my understanding that current studies do not indicate a significant difference in longevity or recurrence among patients who had 2 or 3 doses  and those who had 4.
Bottom line, next Friday he will either get an infusion of the Opdivo/Yervoy combo, or he will get the first of an indefinite number of bi-weekly Yervoy infusions. The single medication infusions with Yervoy have been shown to have far fewer and less severe side effects.
Overall this is good news. It looks like he's currently winning in the fight with melanoma. And I think that I have finally have the full attention and cooperation of ALL of his doctors. I know that working in healthcare in any capacity isn't easy, but it is my personal belief that if you are so burned out that you no longer genuinely care about your patients you need to take an extended leave of absence. I told his oncologist today in no uncertain terms that while he might look at Roy and see a 70 year old man in whom heart and lung issues should not be surprising, that I know my husband better than anyone else. I know what is normal and what is not. His breathing has not been normal or even anywhere in the vicinity of normal since he first started this treatment. If he can't walk to the mailbox and back or take a shower and dress without labored breathing, IT'S A PROBLEM. What is the point of saving him from melanoma if you allow him to die from something else that is treatable? This is the second time during our journey with melanoma that I have had to call a doctor out for not listening and not caring. I am happy to report that in both cases they responded favorably and completely changed their attitudes and began to do the things that they should have been doing all along. It's sad though, that they had to be reminded. My husband may be just a chart number to them, but he is everything to me. He is the love of my life, and my best friend. Doctors should never lose sight of the fact that each and every patient is important to someone and they should give each and every patient the same quality of care and compassion that they would show to a member of their own family.
Rant for today concluded. Thank you for allowing me to vent so I can maintain an appearance of calmness and steadiness for Roy's sake. Be blessed.

Alison - wife of Roy, Stage IV Metastatic Melanoma

Login or register to post replies.

Scooby123's picture
Replies 5
Last reply 6/10/2017 - 11:22am

Well pet scan results back, everywhere I had Mel  before treatment did not light up. Area did was lymph nodes in chest. Not had any involment there before. Christmas  scan showed nodes up 2 . April scan bit bigger. Consultant said nothing on scans there before ippi treatment 2015. To confirm what it is biopsy of nodes in chest.

 

Any one had biopsy in chest lymph nodes and how was it .

scooby❤️

Login or register to post replies.

Bubbles's picture
Replies 3
Last reply 6/10/2017 - 11:20am

As promised, another post on a "novel therapy".  Here patients were post anti-PD-1 or anti-PD-L1 and many were post ipi as well:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-anti-lag-3-plus-nivo-for.html  

For what it's worth.  celeste

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 6/10/2017 - 4:55pm
Replies by: betsyl, casagrayson

Login or register to post replies.

Hammers's picture
Replies 7
Last reply 6/9/2017 - 9:44am
Replies by: Gene_S, Joycem, Anonymous, jahendry12, jennunicorn, SABKLYN, CindyCo

I've been lurking in the shadows and wearing tons of sunscreen.  I have not had my VitD level checked yet, but am still going to suppliment.  I am 32 YO male.

Thanks,

Adam

Login or register to post replies.

jbronicki's picture
Replies 5
Last reply 6/9/2017 - 6:53pm

I'm going to take my own advice that I give others, that it never hurts to post good news for our community, but I do it in honor of Josh.  Josh is literally the reason I'm here on this board, when my husband was first biopsied at his regular dermatologist, there was a comment in the pathology report he handed me that Saturday night he told me he had Melanoma and the initial report said possible Primary Dermal Melanoma (by the way, our oncologist at MD Anderson won't talk about that!).  Everything else on the pathology report was horrible so I totally held on to the one ray of hope.  So of course I googled it and up popped Josh's comment from 2011 and I clicked on it and landed me here on this forum.  I needed any hope I could get and that came in the form of Josh.  

It's so ridiculous that I get good news on the day that Josh leaves us.  I'm as angry as those who posted  I will honor him by running with these results and living each day that we have.  

I just spoke with Dr. Amaria and my husband John's scans were clear (CT head, chest, and abdomen).  It's been a year since his last scan so I was convinced everything was going to be bad (and he's had headaches lately, we forget that you can have a headache and it's not a tumor!) and had multiple panic attacks this week, but she quickly said all looks good.  That puts us at 3.5 years NED.  

Thank you Josh.  I'm so sorry for your kids, wife and family, they lost so much.  Because of what happened and your MPIP friendship, I'm hoping our family can run with melanoma NED for a while, need to drop off the board for now. I love all of you dearly and hope for nothing but good news for all and forever.  Semper Fi Josh and godspeed.

Jackie

 

Jackie <3

Login or register to post replies.

Pages