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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Adriana has surgery in the AM to place her ommaya and is scheduled to start Depocyt on Friday then every 2 weeks. She has not been scheduled for a flow test. I have been doing quite a bit of research and read that it is an important step and most every post I read from folks undergoing IT therapy have mentioned this step. Should I be concerned that it has not been scheduled. I understand the entire process takes 24hrs. As far as I can tell her Neuro-oncologist is quite experienced in IT therapy and has run trials using it (sadly none for melanoma) https://clinicaltrials.gov/ct2/show/NCT00992602. I would be devastated if something bad were to happen because a step got missed. I think the Dr.s get tired of my asking questions and researching but as with us all, our loved ones come first.

We are trying to stay optimistic about the Depocyt working for melanoma given it is her only current option, although any instance of melanoma patients using IT chemo therapies have passed within a few months. We will continue to investigate IT IL-2 options. Adding TIL would not me an option as no tumor has been preserved for such and there are none currently available as the BRAF worked on them? but sadly allowed the brain tumor to occur. 

Thanks for any advice. 

Would love to hear from any one with first hand experience with leptomentingeal disease (good or bad.)

Hoping for the best but very worried, Rob

Adriana

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I was NED since August after follwowing a ipi/nivo treatment at the end of the year 2015. But last week I felt a bump in y left forearm. I had a biopsy done. The pathologist thinks it is a schwannoma ( benign tumor of nerve) but my dermatologist wants to review the specimen with other doctors as it could be a recurrence of melanoma. I have to wait ....

Anyone has gone through this kind of experience ?

Thanks,

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Dad was all ready to start radiation tomorrow.  He met with Doctor Kim Margolin, specialist and only treats melanoma at City of Hope in Duarte, CA.  She had a whole diffrent opinion on this.  Saying that the mets that he has have been around for a long time.  She also said that the radiation would not "work" well for his brain mets and that they have to get him on a diffrent program ASAP.  So far I haven't been able to get the drug names.  She said one of the side effects is Colitis.  She said the drugs are either going to work really well or not, everyone responds diffrently.  She also stated that Dad should NOT be driving due to possible seizures, NO other doc has told him this???

Its all so confusing!!!!  I don't know what to think.

 

Anyone have any insight?

 

Jennifer

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Buddy0513's picture
Replies 2
Last reply 9/26/2016 - 8:55pm
Replies by: debwray, Julie in SoCal

Hello everyone,

I have been posting here about the whole treatment with my mom and we have a new update. I was wondering if anyone had someone similar or any insight to any of this...

She started her immunotherapy last week. That night was horrible, she was very sick, couldn't stand up, had a slight fever, diarrhea etc...this slightly continued into the next day when her ankle swelled up as well (we were checked out and it isn't a blood clot). About 24 hrs (close to this...) the tumor in her stomach basically looked as if it had doubled in size. She had many pains and found it hard to walk. About 3 days after treatment, the other side of her stomach where there was no tumor swelled up as well. She has been in/out of pain, both on and off high stength pain medicine to help her sleep. She has a lot of fatigue (which I am assuming is from the treatment last week)

After meeting with our Dr. He mentioned he wanted to do chemotherapy (Taxol and some other one that starts with a C) because we don't have more time to wait with the location of tumor (it's basically crushing her insides). We start chemo on Thursday. They went over side effects such as hair loss, fatigue etc...with the hope of shrinking the tumor faster since the Dr had mentioned we cant wait the 12 weeks for immunotherapy to respond.

Does anyone have any insight or experience on this? We keep feeling like we are getting worse and worse news at this point. Ever since she started the immunotherapy she has been sicker/in pain more than ever, even compared to the 1.5 months we were waiting to start all of these treatments.

I don't know much about chemotherapy since I didn't expect this to be thrown in with the mix. Any thoughts would be helpful. From what I have Googled Taxol doesn't sound very good, but again I don't fully understand what I am looking for.

I also want to say thank you to everyone who has been following/giving input for this case. Since it is mainly me taking care of her everything has been very hard and any help/prayers are appreciated.

Melissa

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Esmith123's picture
Replies 2
Last reply 9/26/2016 - 7:31pm
Replies by: jennunicorn, Anonymous

Hello, 

It takes a long time to see a derm where I live so I have come to this forum to ask Melanoma questions. I have a tanning history so I am trying to keep myself informed about how to check my moles and what to look out for. I have had a spot in my armpit for about 5 years now. It is weird shaped and has not changed that I know of. It's under 3 mm but was wondering if it would have grown much since noticing it 5 years ago? I am trying to be as careful as I can be and get as much information as I can regarding melanoma. Did your melanoma conntinuously grow each month or year?

Thank you in advance.

-Emily

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mom3girlsFL's picture
Replies 2
Last reply 9/26/2016 - 1:53pm
Replies by: debwray, Patrisa

Hi All,

Just wanted to post real quick recent scans show NED!!! After being on (sometimes off) various doses of tafinlar mekinist combo I am mel free! Wow, can't even believe it! 

Have been on almost a year so i was honestly not expecting the good news.  Even the last lingering 2mm lung nodule has disappeared.  Oncology appointment tomorrow. Not sure where we go from here...any thoughts?  Will i be on meds indefinitely?

Ugh, just trying to enjoy the news and clearing "thoughts" from my head!

Laurie

2002 stage 1

2010 stage 3 - radical groin dissection

2015 stage 4 - lung, retroperinoteal/para aortic - Taf/Mek combo

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/26/2016 - 1:47pm

Hi my name is Alexis, i am 23 years old and was diagnosed with melanoma when i was 13. i've had numerous moles removed over the years that had traces of melanoma in each, and as the years progressed, so did the amount of melanoma found. when i was 18 i had a mole removed on my left breast. out of all the surgeries, it was one of the largest found melanoma underneath the mole being stage t2b. i was to get another surgery done on the same location to further get the rest of the tumor out. long story short, i got cold feet and never went back to finish surgery. five years later, which is presently, i have pains in my left breast each day, i notice lumps have started forming, and the shape has changed some. on top of that, i've been having a lot of issues with my skin in general, from iching raising moles to red rashy arms. can someone inform me of how long i have to get better on my own with natural remedies? or is it immediate to get it checked out again and possible surgery? please, any insight would be appriciated. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/27/2016 - 12:21am
Replies by: Wbatz, Bubbles, Anonymous

I had melanoma removed from my right foot, lymph nodes from my right thigh. I'm on my 5th dose of lectures and so sore and exhausted, I can barely get through a day. I used to play several sports, that's over with for now. Has metrics had this effect on anyone else?

Thanks

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snow white's picture
Replies 7
Last reply 9/26/2016 - 7:19pm

So Dad is going to City of Hope tomorrow.  But, I don't know if its with a Melanoma Specialist.  Can anyone recommend an excellent doc in the LA area?

Much Appreciated!!!!!

Jennifer

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Elana's picture
Replies 2
Last reply 9/26/2016 - 3:46pm
Replies by: Elana, WithinMySkin

Hey Everyone,

I was diagnosed with Stage 3B in late June 2016. I joined the interferon/ipi vs keytruda clinical trial and was randomized to the standard arm and went with interferon. I know that decision is somewhat controversial but that's not what I am posting about here.

After 2 weeks of high dose interferon infusions we had to hold because my LFTs were off the charts. My AST was in the 500's and my ALT was in the 200s. A week later one of my LFTs was still 5x the normal limit so we decided to drop from the trial in order to not miss out on 2 full weeks of HD infusions (which my oncologist felt was the most important part). We waited 4 more days until my LFT's were in the 80's (ALT) and 60's (AST) to restart treatment. That was this past thursday 9/22. They restarted me on a 33% dose reduction (21 million units or something like that). 

Yesterday, after my infusion when I was leaving MGH, I felt like I was having epigastric pain. It felt like a lot of pressure or gas. I thought maybe it was heartburn and I took some tums and rested for a bit before I went to ultimate frisbee practice where I ran around for 3 hours without any problems. Then last night when I went to lay down in bed I felt this overwhelming pain and pressure in my epigastric area. It was not a burning sensation like heart burn. It kept me up most of the night and eventually I realized it hurt more on my right side. This morning it hurts to walk around and breath deep and the pain is dull but hurts more on my right side, just about where my liver should be. I don't have any jaundice, nausea, or any other symptoms. My stools are light brown and not clay colored. The pain goes away when I sit upright. I told all this to the nurses and a doctor took one look at me and said I was fine. 

Mostly I am just wondering if anyone else has ever had these symptoms?  What it might mean? Should I ask to get my LFTs re-checked? I have my last day of infusions for the week tomorrow.

In general I have been doing great with the interferon treatments, my oncologist cannot beleive it. I am 29 and was in the best shape of my life when I was diagnosed. I have continued to stay active and only really ever have symptoms on the first 2 days of treatment, and they are managed well with excedrin/tylenol/zofran.

Any info people might have is greatly appreciated. Thanks!

Best,

Elana

If you are interested in my whole story, I have been writing a blog: https://schwamingcancer.wordpress.com/

Elana

Stage 3B 6/2016

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CindyCo's picture
Replies 7
Last reply 9/26/2016 - 12:07pm

I was wondering if anyone could give us advice as to whether to have a surgical oncologist or colorectal surgeon perform my mother's surgery.  She will most likely need an APR resection and inguinal lymph node removal.  We have an appointment with a colorectal surgeon (who has great credentials and used to be chief of surgery) this Tuesday, September 27, but we cannot meet with a surgical oncologist until October 4 (he has a packed schedule because he is in demand). 

Because we are currently inclined to take the earliest surgery possible, does anyone have any insight as to whether we should hold out for the surgical oncologist or vice versa? 

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Momofjake's picture
Replies 7
Last reply 9/26/2016 - 1:06pm

Quick question,

Jake is finally debating ipi. I felt a little inspired at 4am:) If he is going to give a new treatment a shot, wouldn't a combo be better?? Why not ipi/nivo?? Or what else? He has done: interferon, biochemo, rafiation(tons), pembro, and TAF alone due to side effects. I read his scan report. It's pretty darn good compared to 4 mo ago! It feels like he has a shot at clearing this out even more if he tries a combo. I think he is about to give up, go natural and feel good as long as possible without hospitals and feeling crappy. I want to give him some hope❤️

Thanks all--Kerri

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MoiraM's picture
Replies 4
Last reply 9/26/2016 - 2:14am
Replies by: MoiraM, debwray, Polymath

I joined a forum in the UK because my melanoma specialist nurse hinted that she would really like me to. The forum is an obvious first port of call for people with melanoma in the UK, because it is part of the website of the biggest UK cancer charity. Even so, it isn't very active and there was no one contributing with endocrine side effects of immunotherapy.

My problem is, what do you say to people who have been diagnosed with malignant melanoma (or whose relative has been diagnosed with it) and are absolutely convinced that they (or their relative) have been condemned to death?

It doesn't seem to have any correlation to the patient's staging. Often it is someone who is stage 1 or stage 2.

I guess I could just not reply but that seems mean when they are reaching out. Also, it is often only after they reply to my response that I find out that they are not being swayed by facts or logic.

 

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

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Anonymous's picture
Replies 5
Last reply 9/25/2016 - 3:03pm
Replies by: Ed Williams, debwray, Anonymous, MoiraM

Hi,  I have been scanning these boards and have been inspired and immpressed by the knowledge that exists here.   I know I probably have a very unique situation that probably no one can offer much help with but I wanted to ask in case.  Here is my background.  I had a legion on my arm removed in 2008 that came back "atypical spitz nevus" with heavy lichenoid inflammation.  I had it further exised and have never gave it much thought since.  In 2015, I had a suspicous mole on my toe removed that they pathologist kept sending off for 2 and 3rd reviews.  However, when the final consensus came back it was determined it was fine.  That place on my toe grew back (was a shave biopsy) and the dermatologist did not seem concerend.  However at my last 6 month checkup, he looked at it and said he would have it excised completely since it continued to grow back and given the fact that I was pregnant.  So, I went to the surgeon to have this done.  However the surgeon recommended against the removal due to risk to the baby.  So, I decided to wait till after delivery.  Over a year ago, I had read of the Oncoblot Test (an early detection cancer blood test) and decided to take it.  Well, to my suprise the results came back last week Positive for melanoma.  The blood test is suppose to be able to detect a tumour that is 2mm or larger.  Which is why they call it early detection, however from what I am reading on melanoma 2mm does not seem that early.  So, now I have this information that I have melanoma but am not even sure where.  Plus the fact that I am 8 months pregnant.  I thought about trying to get into MD Anderson as I feel my case is unique.  I am not sure what to do.  I did call the surgeon about my toe and they indicate I can not be seen untill November 21! 

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Hello all,

There is a new peer support group for melanoma patients, fighters and caregivers starting up in Alexandria Virginia.  This is part of a program supported by the Melanoma Research Foundation to seed new support groups around the US.

Meetings will be the second Thursday of each month beginning October 13, at Commonwealth Baptist Church, 700 Commonwealth Avenue, Alexandria VA 22301, at 7:00 pm.    

Questions, comments, or suggestions?  Reply to this thread or email ALXMelanoma@gmail.com.

Thanks!

Wayne

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