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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BrianP's picture
Replies 1
Last reply 9/7/2016 - 2:16pm
Replies by: Julie in SoCal

This looks to have some worthwhile topics.  Free to stream live or attend in person (all though it looks like there might be a wait list to attend).

https://www.eventbrite.com/e/cancer-research-institute-immunotherapy-pat...

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katieherwig's picture
Replies 2
Last reply 9/12/2016 - 12:50pm
Replies by: katieherwig, BrianP

I have been going to MD Anderson in Houston since July 2014 battling stage 4 metastasized melanoma. This hospital has given me new hope and a new life! I'm one of the honorees at the walk this Saturday in Houston. 

Please read my story and if you feel lead to donate or join my team and walk-please do!

 

https://walk.aimatmelanoma.org/Houston2016/teamkatie

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/6/2016 - 4:40am
Replies by: MoiraM, Anonymous

Hello,

I had my melanoma surgery about 9 months ago, (located on my back). I just went in for my 3 month appointment, and told my doctor that I still have pain. She said its normal and that it's prob still healing...I guess what I'm asking is does anyone else have this problem? 

 

Thanks!

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Aaron's picture
Replies 5
Last reply 9/7/2016 - 5:05pm
Replies by: Anonymous, Hukill, Bubbles, Casitas1, Aaron

Has anyone who has experienced pituitary problems or had ipi or nivo experience a change in taste?  It seems some foods have become more bland. Particularly pickled items. 

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Fressia's picture
Replies 8
Last reply 9/12/2016 - 3:50pm
Replies by: Marilynliz, Anonymous, Treadlightly, jennunicorn, Fressia

Hi Everyone,

I can't say I'm happy to be here, but it is what it is at this time. I am 26 years old and newly diagnosed with melanoma as of 8/30/16. I never in my life thought I would receive such phone call, I'm not a typical candidate for who you'd consider likely to have melanoma. I am have olive skin, dark hair, dark eyes, and I don't really go out to the sun often. I won't deny it, I was young and stupid and used tanning beds as a teenager and played outdoor sports without protecting my skin with sunscreen but that's the past and I can't change it. 

The mole I went in for I felt like I've had my whole life but now I'm questioning everything. The reason I went was because I was already having a physical done and the mole looked like it had a ring around it which was different. Nothing like the pics you see on Google, which is why I was completely shocked that it was indeed melanoma. The doctor initially completed a shave biopsy, I obtained a copy of that pathology report and the most concerning findings based on those results was that it measured at least .65mm (Breslow's), mitosis rate of 3/mm2, and the tumor infiltrating lymphocytes were present, non brisk. I've consumed myself gathering as much information as I can from the Internet about these things but everything is so iffy and case by case. I also recently had a punch biopsy done and we are waiting on the results of that. I met with a surgeon who my primary recommended and she's concerned about the mitosis rate and wants to go ahead and do a SNB regardless because the rate is so high. I'm anxious and so scared. So very scared. 

To complicate things a little more, I currently live oversees with my husband who is active duty military. I've seen many recommend to seek melanoma specialist ASAP. I told my husband this is what I want, I want the best of the best but I'm not sure if our military insurance will allow us to use facilities outside of the base. This is something we will have to look into because, I am not going to settle and I can't settle! 

What are questions to ask once the punch biopsy results come in? 

Anyone out there with somewhat similar path findings? 

I'm absolutely terrified, I've had moments when I feel like I can't even breath but I'm also hanging on to hope. I needed to reach out to connect with those who are also going through or have gone through this because this is so scary and knowledge is power. 

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MoiraM's picture
Replies 9
Last reply 9/8/2016 - 2:39am
Replies by: MoiraM, Mark_DC, Amanda, tschmith, debwray, Anonymous

This is mostly me venting. As will be clear from the vent, I cannot speak my mind at the moment to my husband. Also, the friend I had chosen to be my 'buddy' to talk to has developend breast cancer and is in the middle of chemotherapy.

I know I am by far not the worst off person here. I have a trio of related issues.

(1) I have 'unresectable' stage 3C melanoma, which responded to Ipi/Yervoy. I have been told if the melanoma does not begin progressing again within 3 years then it probably won't progress for 10. I am only at 1 year 3 months. I had by latest CT scan a week ago and I see the melanoma team next week.

(2) The Ipi took out my anterior piuitary gland. It almost certainly permanent. I take replacement thyroxine and prenidolone to replace the missing cortisol. I have spent a year trying to get the dosage low enough to satisfy my doctors and finally refused to cut my predniolone dose any more. I tire easily. My tolerance for stress has vanished. My gut had not been the same since my second infusion of Ipi.

(3) I am 'morbidly' phobic of doctors and hospitals. I went through CAT (cognitive analysis therapy) and EMDR (eye movement desensitization and reprocessing) to try to reduce the phobia to the level where I can have treatment. I was reluctant to agree to therapy. It has changed my emotional responses, which my psychologist thought was a good thing but I am not comfortable with it.

My job, which was very, very important to me, is no longer enjoyable. I already only work part time. Because I tire easily and have less capacity for stress, I have had to modify what I do at work. Much of what I enjoyed has gone. What is left is a series of difficult to resolve problems I can tackle from the office while I watch other people do what I used to love doing. To be honest, they do not do it as well as I did.

I took 6 weeks' leave over the summer. I continued working to get the dosages of the replacement hormones right. I tried to get fitter. I found a new psychologist (paying this time, the previous ones were paid for by the NHS - I am in the UK).

I had a great time. I felt much better.

I have been back at work for two days and it could be seven weeks ago. I am tired, stressed and unhappy.

My new psychologist encouraged me to follow up the possibility of giving up work.

In my heart I always believe that we could afford it if I wanted to give up work. My husband would be fine with it. I would lose my life insurance (yes, I have checked) and my pension would be damaged badly (there again, will I need it?), but surely day-to-day quality of life is paramount.

Well today I bit the bullet and analysed our finances.

It was a nasty shock. I had not realised how expensive being unwell had been. Over the past 12 months, we not only have spent every penny we earn but another £8500. That wasn't a problem, we had the savings to cover it, but if I give up work we will have to cut out 35% of our current expenditure.

So I am sitting here imagining what it would be like. We are not a high-spending couple. We don't drink. We don't go on holidays. We only have one car between us. We would have to watch every penny.

My husband has always been the one who worries about money. Now he is saying things like 'We'll cope, I want you to be happier." when I know the prospect horrifies him.

It horrifies me.

So the idea of analysing our finances to open up the possibility of me leaving work has backfired badly.

I know I am not too ill to work. I can carry on. They will not fire me. I will continue to be paid for doing the least enjoyable parts of my old job to a lower standard than I am comfortable with. I will feel conpletely drained every work day and, usually, for one other day for every working day.

One of my friends is chronically ill. He just shrugs and says that's what it is like.

If I had the energy, I would find a large cardboard box and kick it to smithereens.

Vent over.

Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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keepthefaith11's picture
Replies 1
Last reply 9/4/2016 - 8:34am
Replies by: Bubbles

My dad had his brain scan on Friday. It has been a little more than a month since he finished whole brain radiation. Does anyone have any ideas of what we might see on the scan? Just really nervous and want to know what to expect. He had 13 Mets in the brain, ranging from 2 millimeters to 15 millimeters.

He is feeling great now. No issues with speech and plenty of energy. Living his life as normal. No headaches, no mood changes. I would think this is a good sign. Especially since all this started with seizures.

For those of you who have had brain radiation, did it work?

The doctors are saying that depending on how the scan looks they will determine treatment based on that. If it looks like there is activity even after radiation, they will start him on the Inhibitors. Otherwise they feel comfortable getting him on Opdivo.

I know radiation is just a temporary fix. How long did it take before your tumors started growing again.

Please share your experiences. Thank you!

Annie

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landlover's picture
Replies 10
Last reply 9/3/2016 - 9:40pm

I just wanted to post a little update on my situation.  Brief background is I am stage 3c (diagnosed stage 1 in Nov. 2015) status post left neck dissection in May, now with new and growing lung nodules making me ineligible for the clinical trial I was hoping to enroll in.  The lung nodules are small (3mm, 4mm and 8mm) and inaccesible for needle biopsy at this time, and did not "light up" on PET.

I wanted a VATS to remove one for diagnostic purposes so that I could get treatment if it is mel.  I was really distraught when my doctor. said "no".  However, after a 45 minute appointment with him this tuesday during which he went over everything very thoroughly with me, I am at peace with his recommendation to wait and re-scan in 2 months time.

I am looking forward to a beautiful Michigan fall and for the first time since my surgery I feel a little free from stress and worry.  I understand that I am most likely going to be dealing with mel again, but for now I am putting it on the back burner and enjoying this beautiful life.  It isn't often that we who have melanoma get to relax but I now look at this as a gift.

Thanks everyone and I am here with you in your journeys  as well

Best,  Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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Replies by: kylez, Mikers, Bubbles

Hello,

last MRI revealed accumulating of contrast matter along whole spinal cord i.e. leptomeningeal progression (after multiply brain mets). Some small lesions are also stand out from background. 
I know that there are not to many positive stories on dealing with this stage but maybe someone can share experience or link to possible clinical trial? (Europe is preferable)
Thank you!

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becky15's picture
Replies 10
Last reply 9/5/2016 - 9:29am
Replies by: MoiraM, geriakt, Bubbles, Anonymous, becky15, jbronicki, Kim K, Ed Williams

Regarding recent comments on this forum, it is all very well for those with the benefit of insurance in the US to imply that an SLNB is a no brainer with thin melanomas, be your own advocate etc etc. Many readers of this forum will be from Europe where, as is mostly the case and definitely is where I am in the UK, consultants will follow nationally set guidelines. As medical treatment is free to all in most European countries, there is a limit to funding and patients cannot just demand procedures just because they might want them. The guidelines in the UK are backed on the AJCC 2010 guidelines and these di not call for an SLNB under a depth of 1mm so it would be highly unlikely that you would get one.

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Regarding recent comments on this forum, it is all very well for those with the benefit of insurance in the US to imply that an SLNB is a no brainer with thin melanomas, be your own advocate etc etc. Many readers of this forum will be from Europe where, as is mostly the case and definitely is where I am in the UK, consultants will follow nationally set guidelines. As medical treatment is free to all in most European countries, there is a limit to funding and patients cannot just demand procedures just because they might want them. The guidelines in the UK are backed on the AJCC 2010 guidelines and these di not call for an SLNB under a depth of 1mm so it would be highly unlikely that you would get one.

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sleepyt23's picture
Replies 12
Last reply 9/12/2016 - 1:05pm
Replies by: Hukill, KAF, Anonymous, sleepyt23, dmturner, slh4448, JoshF, debwray, Patina

Had my first infusion of Yervoy for adjuvant treatment a week ago. Main issues I have had to far are diarrhea, itching, and now flucuating between really cold and really hot at night.

Per my doctor's instructions, Imodium has stopped the diarrhea. Benadryl, lotion, and sensitive skin soaps have lessened itching.

What the heck can I do about the cold chills, burning up, and fever at night? This has happened for the past two nights and it is miserable. 

The itching is starting to drive me insane, too. I wake up in the middle of the night and feel so itchy!

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Anonymous's picture
Anonymous
Replies 0

See other post

Stan

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sscottmusic's picture
Replies 7
Last reply 9/3/2016 - 2:21pm
Replies by: jennunicorn, Anonymous, Kim K, landlover, debwray, Rick from NC

This is Stan Scott from King nc. In July they found my 3rd mm after surgery the site got mrasa. Now this week they found my 8th basil cell on my nose. The first cancer on my face now I'm afraid I will come out looking like a monster. Help me. 

Stan

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