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
Anonymous's picture
Anonymous
Replies 3
Last reply 11/9/2016 - 10:22pm
Replies by: Lhawkins, Whyland1, Cathy M

This is a very important post. I lost my husband to leptomeningeal disease from melanoma last month. I am looking to help someone truly in need of tafinlar and mekinist. It can save lives, it just couldn't for my husband due to how his disease progressed. I have meds left and I am not just throwing them away. Help me everyone to help someone else.

Please respond if you know of anyone.

 

Login or register to post replies.

Polymath's picture
Replies 20
Last reply 11/9/2016 - 11:55pm

I normally keep my cool regarding my battle, but last night I must say the demons were running amok.  PET/CT results appear to show my 12-month run on ipi-nivo (with radiation), which provided some improvement and/or stability has come to an end.  My main problem is the splenetic masses.  A pair of orange sized tumors that have more or less merged into a very large, cantaloupe sized mass engulfing my spleen.  I knew things were not going well as I began to notice my ribcage being being pushed outward, and the invasion into the stomach area which has caused various appetite and discomfort issues.  OK, that's the venting part.  Now it's decision time.  I have looked into radiation again and determined the potential collateral damage to GI tract is very risky, but still under consideration.  Surgery to remove entire spleen is an obvious choice but both these treatments carry risk and potential long-term side-effects.  Ideally, immunotherapy would defeat this monster, and my doc has me pegged for a trial of IDO inhibitor combined with anti PD-L1 which sounds really good, but does not begin for several months.  But time is running out and the spleen issue is causing stresses on other systems that could cause massive internal bleeding and risk death.  So, anyone who had spleen removed?  Melanoma in spleen is unusual but somebody must have dealt with it.  I'd love to hear from you.  Radiation?  Or any luck with drug therapies defeating unusually large solid tumors?  Please chime in.  Best to you all in the battle.

Gary

 

Login or register to post replies.

Aubreesmommy41's picture
Replies 5
Last reply 11/13/2016 - 5:43am
Replies by: Anonymous, Aubreesmommy41

Went for my 6 month skin check and he did 3 punch biopsies.. one in my chest, one of the backside of my right arm and one on my back.. he said he didn't think they are melanoma but may be dysplastic nevis.. I've had 3 of those already along with a stage 1 melanoma on my left arm.. I really don't have a question just wanted to vent.. everyone on this board is having their own varying degrees of battle with melanoma.. I'm 6 months out and wondering when I can breathe and be happy again.. I'm thankful I only had a stage 1 and I'm praying for everyone on here.. but geez the anxiety is brutal!!

Login or register to post replies.

davidstewart's picture
Replies 7
Last reply 11/18/2016 - 8:17am

I have metastatic melanoma, treated with 2 infusions of ipi/nivo last fall.  Recently experienced inflammation of the meninges of my brain, causing significant neurological impairment; was hospitalized; experienced a major seizure and was placed on anticonvulsant medication (KEPPRA). Treatment with high dose steroids brought the swelling in the brain down and is allowing return of functioning.  They do not think it is metastatic cancer, nor sarcoidosis, but a delayed side effect of ipi/nivo treatment. Hopefully as steroids are tapered the swelling will stay down and I will return to normal.

Questions: Has anyone else had this?  What treatments were used?  What was the outcome? Does it have any significance for prognosis?

History:

I was diagnosed with metastasized melanoma August 31, 2015.The PET scan showed cancer in lymph nodes, bilateral pulmonary nodules and a right adrenal lesion. The brain was negative for intracranial metastases. I had my first infusion of ipi/nivo on October 2, 2015. Colitis was addressed with low dose steroids.  Second infusion was December 4, 2015. Colitis was treated with high dose steroids. High fever and disorientation led to hospitalization for a few days at the beginning of January, treated with high dose steroids.  At the end of January I came off the steroids and was feeling much better. There was only a small nodule in one lymph node. 

PET/CT scan on January 28, 2016 revealed findings of concerns in the lungs. . A pulmonologist performed a biopsy and diagnosed it sarcoidosis, mild and no treatment necessary.  Some problems with kidney functioning resolved on their own as well.

At the end of this past summer I began having visual anomalies such as small illuminated letters that when I examined them would persist and  I eventually got used to them. More recently I was frightened by driving and not seeing a truck in the right-hand lane. I was having a medium range constant headache that lasted about ten days. When I began having difficulty finding words and doing routine tasks, I went  to the ER.  They checked for strokes/tumors did not find anything and released me with the tentative diagnosis of TIAs, small strokes that leave no permanent damage.  Two days later my symptoms became worse, went back  to the ER and was admitted.

I had multiple neurological problems – not being able to understand or comply with instructions about touching my nose, moving my foot in a certain way;  could not understand questions like “how many pennies in a dime”; difficulty forming sentences, finding words; identifying common objects and the peripheral vision in my right eye was virtually gone. Possible diagnoses: leptomemingeal carcinomatosis, sarcoidosis or inflammation as a side effect of ipi/nivo.

High dose steroids brought a beginning decrease of symptoms but then I had a major seizure and have been placed on antiseizure meds (Kepra).  Am home and am continuing to improve but still not back to the mental acuity before this episode. (My wife is helping me compose this.)

Thanks for any information.....David

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 11/8/2016 - 4:37pm
Replies by: debwray

hello everyone. i am wonderign if anyone has any info about choosing to take out sentinel nodes only during CLND to reduce chance of lymphodema ?  my husband has a deephip lymph node which we are told is sentinel.  because he is concerned about lymphedema, his surgeon is suggesting only takeing out the deep hipsentinel  lymph node robotically(as the most potentially dangerous one ) and leaving the surrounding basin ones alone to reduce chance of lympodema .  any thougts / comments woudl be very much appreciated. also  if this proves positive, would this still qualify him from stage III  clinical trials?  thank you kindly

Login or register to post replies.

snow white's picture
Replies 6
Last reply 11/10/2016 - 10:59am

Well...my Dad is finally home.  He had his 1st dose of NIVO exactly 1 week ago.  He did fine, he said it took 1 hour.  Not much in the way of side effects, he said he felt slight flu like symptoms but not bad at all. He will go 1 week from today for his 2nd infusion.

When I went up to see him yesterday, he was very weak and tired.  He said he didn't sleep well.  He seems very tired, his color is off, he is not himself, kind of hunched over etc.  It scared me.  I came back down to my house and just cried. I am trying so hard to be strong, but it just kills me to see him this way. So far, I have been able to be strong and positive in front of him.  I want to push him a bit and get him up and walking around more, but I am not sure how hard I can push.  What scares me the most is that I know we have a very long road ahead of us and I am having a hard time thinking about anything else but him.  I know I have to be able to live my life with my family, but its so hard not to be focused all of the time on him. Funny thing is, he wants me to keep doing my "normal" rountine, but sometimes I fell like I am betraying him for laughing and having fun.   Ugh!

Sorry for rambling so much, I guess I needed to get this off of my chest and talk to people that understand.

I hope you are all doing well not matter what stage of this battle you are in.  HANG IN THERE!!!!!!

XO

 

Jennifer

Login or register to post replies.

landlover's picture
Replies 7
Last reply 11/9/2016 - 10:48pm

Yesterday I received my PET CT results from U of M and although I do not know the FDG uptake ( I was at work when Dr. Lao called me and a little thrown off), the 3 lung nodules all had uptake and Dr. Lao finally admitted that he thinks that they are metastisis and wants a biopsy.  Scarily he said that a portion of my esophagus also lit up but that it could be just inflammation?  He had already talked to interventional radiology and they declined to do a needle biopsy so he wants to schedule me for a wedge resection.  I have read others posts about that procedure and I feel ok about it.

I imagine that I will meet with onc after the biopsy results and if positive will make treatment decisions.  In a weird way I am glad that I finally will be able to DO SOMETHING about this invader in my body other than just trying to be healthy and keep on keeping on (and of course the neck dissection..)

I am nervous, I am confused but I ahve here to work it all out and for that I am thankful.

Peggy

Login or register to post replies.

wayward's picture
Replies 2
Last reply 11/10/2016 - 8:25pm
Replies by: wayward, Janner

My wife had noticed an abnomal spot on my back and asked me to goto the doctor I went to my GP doctor and she referred me to a dermatologist. The dermatologist did a biopsy and sent it to the lab and the results was that they found what thay called suspicious cells that could be precancerous. The dermatologist cut out that area along with a margin as a precaution. When they sent that to the lab the results was what he called stage 2 inside melanoma. He described the thickness as three sheets of paper and I'm not sure what that translates to in thickness. He said what happened to me was rare but does happen sometimes. He cut a larger area for a wider margin and the lab results was clear. I did have him do a full body scan and he did a bioposy of a mole but haven't got got the results yet. I will get the stiches out in a few days. I have a follow up every six months for the next two years at least.

The initial diagnosis was very scary but I do feel much better now.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 11/8/2016 - 5:42pm
Replies by: landlover, youngann, debwray

Yesterday I recieved my PET CT results from U of M and although I do not know exactly the FDG uptake ( I was at work when Dr. Lao called me and a little thrown off),  the 3 lung nodules all had uptake and Dr. Lao finally admitted that he thinks that they are metastisis and wants a biopsy.  Scarily he said that a portion of my esophagus also lit up but that it could be just inflammation?  He had already talked to interventional radiology and they declined to do a needle biopsy so he wants to schedule me for a wedge resection.  I have read others posts about that procedure and I feel ok about it. 

I imagine that I will meet with onc after the biopsy results and if positive will make treatment decisions.  In a weird way I am glad that I finally will be able to DO SOMETHING about this invader in my body other than just trying to be healthy and keep on keeping on (and of course the neck dissection..)

I am nervous, I am confused but I have here to work it all out and for that I am thankful.

Peggy

Login or register to post replies.

KDE's picture
Replies 7
Last reply 11/9/2016 - 4:46pm
Replies by: KDE, Janner, Anonymous

Doctor has told me that I have a melonoma in situ. The pathology report diagnosis does say in situ, however it list the pathologic stage as pT1a. So am I in situ or stage 1? The following is the info on the report. Thanks so much for any help with this. 

Final microscopic diagnosis: Melanoma; the in situ component extends to the tissue edge. 

Type: superficial spreading  

Tumor Breslow thickness: 0.35mm

Anatomic level of invasion: Clark level lll

Ulceration: absent

Dermal mitotic rate (mitosis/mm2): 0

Microsatellitosis: none identified 

Vertical growth phase: absent

Regression: absent

Angiolymphatic invasion: not identified 

Neurotropism: not identified

Tumor infiltrating lymphocytes: non brisk

Precursor lesion: none identified 

Pathologic stage: pT1a

comment: sections show a proliferation of atypical melanocytes in the epidermis and dermis. The junctional component is disposed in a confluent fashion with pagetoid upward scatter. The dermal component is present in small aggregates and single cells without maturation. 

 

 

 

Login or register to post replies.

jennis3b's picture
Replies 1
Last reply 11/7/2016 - 5:25pm
Replies by: debwray

Hi friends,

I have an appointment Monday with Dr. Zager from Moffitt Cancer Center in Tampa, Fl. Has anyone had him for a doctor?

Just curious!

Thanks in advance! 

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 11/7/2016 - 5:16pm

I was diagnosed in April with 3B melanoma.  Currently participating in clinical trial and receiving keytruda at 200 mg.  Feel as if I just got over the anxiety of the first set of scans and now it is time for it again.  In the study it's written for every 12 weeks for pet/ct and annual MRI of head.  I'm wondering what the standard of care is in relation to scans?  Should I be worried about all the radiation exposure or is that the least to worry about?  Is the recommended interval every 12 weeks for two years?  Thanks so much..

Login or register to post replies.

Dear MPIP Community:

Next week, I'll be recording a webinar for Stage III melanoma patients with Vernon K. Sondak, MD, Chair of the Department of Cutaneous Oncology at Moffitt Cancer Center in Tampa, FL. Dr. Sondak has a vast amount of experience in melanoma and surgical oncology and treats melanoma patients at all ages and stages. This will not be a "live" webinar, rather, I will be recording it with Dr. Sondak and his presentation will cover a variety of topics - including diagnosis, treatment and research specific to Stage III melanoma. The webinar will then live on our website and be promoted in a variety of ways.

If you have specific questions or topics that you would like Dr. Sondak to address, please email me directly at education@melanoma.org. I will gather all questions/comments and Dr. Sondak and I will work together to streamline those into a robust and dynamic webinar. 

Looking forward to hearing from you!

Shelby - MRF

Login or register to post replies.

JoshF's picture
Replies 18
Last reply 11/9/2016 - 3:24am

I haven't been checking in much lately. So I hope this finds everyone well. I think often of all of you and pray you're well. I've had a lot of anxiety and crap going on in my head lately. Anyway, I was in Houston this week at MDA for 6 week scans post TCell infusion. So bottom line I'll take this as a win though as you can all attest to, we want better. The brain MRI showed nothing new which is great after having gamma knife Aug 19...big win! The CT Scan showed nothing new and minimal progression in few leisons. The team referred to a 3-8% progression. While we'd like things just disappearing, it's a process and I'm told it can take time as it been just over a month. So that leaves us committed to completing the trial in regards to treatments. So I did dose #3 of ipi(just an FYI with all treatment I've done...that was dose #10 of ipi for me). I'll go back right before Thanksgiving for final dose. Then in mid Dec we'll repeat scans and go from there. They're also going to biopsy a sub-q to test. Whew!!! This is a crazy life we live but I'm living and get to hug my wife & kids so I'll deal with it. 

Finally, I did have a few sub q's shrink up but not go away totally. Some of you will recall last posts asking questions about this. They (MDA) don't include that in progression etc..as it appears they're not measuring. Just that nothing new showed up. I'm scared and hope my immune system kicks into high gear. Though I'll take this latest news as positive since I've only been kicked down since May. Love and peace to you all!! Thank you for your unending support!!

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

jvictoria's picture
Replies 3
Last reply 11/7/2016 - 1:11pm
Replies by: jvictoria, debwray, geriakt

Hi everyone,

Well, ended Nivo trial in June because of side effects and two small spots showing up in the lung. Subsequent follow up CT scans in August showed significant shrinkage; PET scan showed no uptake. Unfortunatly, CT scans last week showed significant growth of the lung nodules and a new spot on the liver.

Doctors have recommended a low dose IPI/Pembro trial so I was wondering if any of you have had experience with the combo. Looking to find out what to expect. Plan is to start the trial this Tuesday.

Any other thoughts are very welcomed also.

Thanks

Juan

Login or register to post replies.

Pages