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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gaby's picture
Replies 14
Last reply 7/29/2014 - 8:22am

HI

My husband is stage 3A since July 2012. He is with interferon pegylado treatment since October 2012. Since his diagnosis that we have no holiday. My husband is terrified of being under the sun, so is very difficult to go out somewhere. I do not know how to solve this issue. My husband used sunscreen but the sunscreen does not give the peace. He is now 40 years old.

Appreciate any advice

Regards

Gaby

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jualonso's picture
Replies 2
Last reply 7/29/2014 - 9:18am
Replies by: Ginger8888, jack6020

Hi folks,

No one of us would like to be part of a big trial like this, but unfortunately we are.

Im thinking to collect some datas of each of us (just stage iv) that i think, crossing them we will be able to get some answers about why some treatments work o not. May nothing can be gotten but who knows, we are a lot of people and perhaps with a lot of data is possible to realize of something. This is just and idea. what to do you think about it?

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ymellin's picture
Replies 2
Last reply 7/26/2014 - 6:10pm
Replies by: ymellin, Janner

Hi, I just had surgery this past week for melanoma in situ. The area was the front of my right shoulder and I have a 3 inch incision. Am waiting for biospy reports to return to make sure that all is clear. Can anyone tell me what happens after this? 

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tcell's picture
Replies 5
Last reply 7/27/2014 - 4:43am

Hi all,

- diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones

- good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere

- bloodwork in June already not 100% ok so put staging one month earlier to July 21

- results show considerable growth in chest, lunhs, one liver met shrinking, one growing....bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.

Guess that's it for the combo. Discussed with my specialist. Next step will be Ipi and continuation of Taf with just short breaks before and after the infusions. He said that there are good results from an Australian Phase 1 trial with that Combo. He hopes that Taf will put kind of a brake on tumor growth as my burden is rather high until Ipi kicks in  He says it is important to discontinue Mek as this caused severe troubles in combination with Ipi.

next option if something goes wrong will be Anti-Pd1 EAP. I hope, however, not to fail Ipi.

any comments, suggestions and uplifting words are welcome!

Thanks to all of you who are of such great help in dealing with this illness.

Chris

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Replies by: fortiz, tcell, jualonso, Anonymous

Hi folks,

Finally i have decided to stop with combo, i was talking with my doc about to start

Mek anti pd1, but the condition is to progress on ipi or braf inhibitors, then the only option i have is to stop taking pills before the next PetScan and show progression in it (now in NED)

Is a very tought decision but i dont have any other option if i want to avoid resistance and still keep these drugs with pottencial for the future.

I would be very gratefull any help from someone who has follow the same path

 

Juan

.

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angtom's picture
Replies 6
Last reply 7/29/2014 - 5:45am

My husband has stage 4 melanoma and has been accepted to the TIL trial at Moffitt he is BRAF negative, my question is what is our back up if this does not work? I am just trying to get all of my options as a precaution. He will be doing the IPI - IL-2 Immunotherapy first IPI is on August 1st. I would appreciate any advice or anyones experience with this trial as I want to try to make him as comfortable as possible during these procedures. He is a healthy 51 year old and still working 6 days a week 10 to 14 hours a day, against my advice but it keeps him sane. I welcome any and all feed back, thank you so much.

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Beth_A's picture
Replies 10
Last reply 7/28/2014 - 9:29am
Replies by: mary1233, Beth_A, Anonymous, Kim K, RJoeyB, hbecker

I just received a phone call this past Tuesday letting me know I had melanoma. I got a copy of the pathology report that was obtained from Mayo Clinic - apparently my local lab sent it to them due to coming back "atypical."  The patho report is pretty frightening, especially when paired with excessive web searching. I was going to wait for my family practice NP to refer me to a dermatologist, but instead I called the Melvin & Bren Simon Cancer Center in Indianapolis, IN  to try and get an appointment. They were super nice and helpful, after getting a copy of my patho report they set up an appointment for next Tuesday with a Dr. Swartzentruber. I looked him up and he has a great reputation, so I feel good about that. I'm really anxious though and hope my appointment will help resolve some of the incredible anxiety. Nice to land somewhere that has people familiar with this problem :)

Beth A.

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arthurjedi007's picture
Replies 7
Last reply 7/27/2014 - 4:51am

Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

 

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Dear MPIP Community,

We are looking for volunteers in the Chicago and Dallas areas. Our partners at the American Academy of Dermatology (AAD) need volunteers to help with skin screenings at a few NFL games in those cities. Volunteers are needed for the Chicago Bears Family Fest on Saturday, August 2nd, the Dallas Cowboys home opener on Sunday, September 7th and the Dallas Cowboys Rally Day on Monday, September 8th. If you’re interested in volunteering, please email AAD’s Tina Shepherd at tshepherd@aad.org

Have a great weekend,

Shelby - MRF

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Just wondering if anyone heard from melfighter? I know her husband is going through a lot and was supposed to see his UCLA doc last Monday. Am hoping everything turns out good.

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Gene_S's picture
Replies 1
Last reply 7/25/2014 - 12:58pm
Replies by: Gene_S
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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robbier's picture
Replies 2
Last reply 7/28/2014 - 2:53am
Replies by: RJoeyB, Ginger8888

smiley  Bringing everyone up to date.  I had biopsy April 14, then Biopsy April 24, sent to MD Anderson May 26th of 2014.  Came home, Biospy June 20th here at home (with home being south alabama).  I live in  a small town that is approxiately 20 to 30 minutes from Gulf Shores, Al.  Had a pet scan July 23, saw my doctor yesterday.  Being sent for a Bone density test.  The findings on Pet scan states: Metastatic disease suspected in the left symphysis pubis and right mid femur.  (2) Activity with the right chest compatibile with recent surgery as well as midline abdominal pelvic incision.  So bone test, then back to see Doctor to discuss clincial trail, wich Yervoy was discussed.  I have that BRAF gene, and that could mean a combo of drugs. 

I have  already told doctor that when I do the medicine, for them to go ahead and put port in, I only have one vein that can be used due to lymph nodes missing from my right one.  I was stuck three times Wednesday befind finding my vein for the pet scan, (veins deep) and small in hand, they blow.  Stuck twice onThursday at Doctors office, then the vein qit giving that blood they wanted. 

I keep my head up, and I still have a strong faith in God and believe in him.  I know that is where my strength comes from in handling this situation.  So any infromation someone might have that can help me make a good deciision on medicine or treatment will be benefitul.  

 

Iam now considered Stage IV MIB for Melanoma, I have had no kind of treatment and been battling since august 2011.

robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Maureen038's picture
Replies 5
Last reply 7/27/2014 - 7:55pm
Replies by: Maureen038, kylez, RJoeyB

Bill was allowed three more infusions of nivolumbab instead of being taken off the trial. He argued that because it was a terrible allergy season and his esophills count was so high that that might be a reason his hilar and mediastinal lymph nodes were slightly enlarged.  Scans on Monday showed shrinkage in all of his lymph nodes and his esophills count is still extremely high. He had two percent shrinkage and he has now had ten infusions. On his seventh infusion he developed vitiligo that continues to spread from his face, arms and now legs.

Hear are my questions:

1. Is it possible for the nivolumbab to also be causing the esophills count to be so high because it amps up the immune system?

2. Bill has one lung nodule that continues to grow slowly each scan. It is now 2 cm. Is it more effective to do VATS surgery if after the next scan it grows more or would you use radiation?

Thanks for any advice!!

Maureen

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Polymath's picture
Replies 5
Last reply 7/25/2014 - 3:23pm

After going Stage 4, I went on Zel (Dabrafenib) being BRAF positive.  Horrendedous side effects, but very effective in dissolving tumors.  But after only 3 months I progressed.  I took a 2-week break off all meds and immediaily began to recover from the Zel side-effects.  Then started the TAF/MEK combo, which has had virtually no side-effects but has been much less effective.  Stable for a couple of months, but by 3rd month progressing again.  So I am again going to do a washout, this time for 3-weeks or more before beginning Yervoy.  My question is have others had what they feel as better experirinces and results with the cleansing period between drug therapies, or do I run a serious a serious risk of rapid tumor grouth with no inhibitors at work?

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Anonymous's picture
Anonymous
Replies 32
Last reply 7/28/2014 - 5:26pm

Has anyone else been told they WILL have a recurrence? I have and I'm totally confused when I was told my nodes are clear. Help me understand!!

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