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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Nick C's picture
Replies 19
Last reply 10/9/2018 - 12:43pm

Started a new clinical trial yesterday...13 hours at the clinic. Back again today for EKG and blood draw. Same schedule in two weeks. Its been a fun and interesting 7 days... eye exam, heart exam and CT in a two day period. Trial drug is in pill form, taken weekly,  and is an ERK inhibitor. Immunotherapy drugs didn't work for me...so onto a new strategy. I'll keep you posted on results.

NIck


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Anonymous's picture
Anonymous
Replies 4
Last reply 10/8/2018 - 9:07pm
Replies by: Janner, MelanomaMike

.93 melanoma, stage 1b.  No sentinel node biopsy. Was told skin checks every 3 months.  A new dermatologist says every 6 months meets NCCN guidelines.  Who is correct?  Thanks.

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JennH's picture
Replies 9
Last reply 10/9/2018 - 11:54am

So here's my story, I'm curious if I am just impatient and this is how things go...

On August 20, I went in to the Derm to have 2 moles looked at. The second (on my bum)  I almost didn't say anything about since my regular doctor had told me it was some kind of dermoid or something. (at this point it's been there 3-4 years)

So the interim doctor did a shave of my eyebrow and bum. Two and a half weeks I called since I had not heard anything back, well there were no notes. 2 days later (09/6)I got a call that I needed to come in today for a picture. The regular derm said over the phone that I had spitzoid melanoma and went on and on and I did not grasp anything she said. I came in later that afternoon, she took a pic, expressed her frustration that it hadn't been done the first time, and shaved it down to the fatty layer. Oh by the way this is the one on my bum. In the meantime I'm told not to goodle anything and that there is not much known about this type. okay, yeah, right. Do you know me?

They sent it out again and comes back Clarks level at least a IV, Breslow at least 2.5mm and focally transected at the base and the tumor extends to the deep margin. Mitotic index is less than 1 per sq mm.

Now I am sent to a plastic surgeon to have my bum cut off and a sentinel node biopsy scheduled. This will happen 10/18. 

In the meantime, I am wondering why I'm going through all this. Yes, I understand melanoma is cancer. but I don't understand why. I am not sick, I have had this for years with no issue. And now i am to undergo a MAJOR surgery that will leave me on my belly for minimal 2 weeks. 

Does it really take this long? Should I be concerned? I am starting just to get angry. i certainly don't need to be caressed and be told everything is going to be okay, but I'd like to know more about what is going on, and not feel like I'm "going through the standard process". and no Madam social worker, I don't need something for anxiety, I need to be educated on my condition. 

and I hear about people having scans and x-rays? Is this something I should ask about? Or does it come after...

Well, there you go, 

I'm open to comments, is this how it goes? or should I be looking elsewhere for care? Thanks!

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Elizabeth123's picture
Replies 9
Last reply 10/8/2018 - 3:05pm

Hello all

 

We spoke with the doctor yesterday,  Ezio's MRI of the brain showed significant progression. They will do no more radiation.  And we currently are on hold with our pembro/ipi treatments.  It's a watch and wait. With supportive care,  either the combo will kick in and start to shrink the tumours or it will progress and it's over.  This doesn't sound good. 

Holding out for a miracle 

 

elizabeth

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Now that a number of people have been on monthly Opdivo treatments, I wanted to reach out and see what your experiences have been. I hope that I will be coming to a cross roads at the end of October. I am 22 treatments into my second round of Opdivo and based on my last scan, I hope the next one will be good news. I have tolerated treatments very well. For example, I got my biweekly treatment yesterday, drove an RV pulling a car for 7 hours today, then road about 9 miles on a mountain bike in the Ozark hills. I would like to talk with my oncologist about moving to monthly treatments for the remainder of this round of treatments, so I have more flexibility to travel. Back to my questions:

Do the monthly treatments hit you harder than biweekly? If so - what are the issues?

Have you had and negitive results on your therapy? I.E have you lost ground in your battle with melanoma.

One final question, I am seeing that once someone is NED the general proticol is that you should stay on the treatment for 6 months to a year. What are you hearing from your oncologist? My oncologist is leaning toward 6 months.

 

kcmtnbiker

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AMcReader's picture
Replies 3
Last reply 10/3/2018 - 2:30pm
Replies by: ed williams, Janner

Hello friends,

I just got the FoundationOne report identifying the mutations of my brain tumor and I learned several things, two of them being 1) my tumor has a number of mutations and 2) one of those mutations is the CKIT mutation.

I’m currently on Nivolumab and responding well but I’m always trying to learn more about other options in case things start going less favorably. So, I’m wondering if anyone has been on any treatment specific to the CKIT mutation. If so, what was your experience?

Sending love to you all!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

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Anonymous's picture
Anonymous
Replies 10
Last reply 10/6/2018 - 3:38pm

Hello family

today we were going to receive our 7th infusion of pembro ,  and we have also had 2 doses of 1mg of ipi.  but when we got to the hospital Ezio ability to walk and his weekness was really bad.  The nurse called the doctor and they wanted to do a head ct to see if the brain was bleeding.  so no brain bleed but really bad swelling from all the brain mets.  We were already on 24 mg of dexamethasone. And it wasn't helping.  He also had a seizure while in the hospital.  They had admitted him to see what they can do.  But it doesn't look good. We are running out of options.   

Looking for any advise or options.  Feeling really down ,  we really need a miracle.

Elizabeth

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mmmm's picture
Replies 2
Last reply 10/3/2018 - 12:58pm
Replies by: MelanomaMike, marta010

hi everyone! 

currently on taf/mek, and have been having this weird pain in my glutes and it band area of my legs. it feels more muscular than joint pain but its also much more sensitive to pressure than typical recovery pain after a workout. like it kind of hurts my butt and the sides of my thighs to lie on my side in bed or even just take off my pants. has anybody else experienced this or maybe does it take longer to recover from physical activity on these drugs or is my body just being weird from something else?  

Another question I had is am I allowed to get my teeth cleaned while on these drugs? I went for a teeth cleaning and they said they normally dont do it while people are on chemo but this technically isnt chemo, but they also werent familiar with the drug protocol. probably best to ask the doc but was wondering if anyone else experienced this! 

thanks in advance very grateful for the collective knowledge and lovely people on this board! 

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Jennycrn1's picture
Replies 5
Last reply 10/4/2018 - 5:48pm

Hello group. It's been a while since I've been on this site. I'm 3 and 1/2 years out from surgery. Primary site was on my back. My SLNB was positive but later, all the other nodes were negative. Every PET has been negative until this summer. Now, a follow up chest CT shows two lesions. Biopsy on Friday with repeat PET on Thurs to make sure nothing else shows up anywhere else. Started reviewing the clinical trials site. I know I need the path results first, but I'm looking. Anyone have opinions on the most effective trials? Thanks!!

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MelanomaMike's picture
Replies 5
Last reply 10/4/2018 - 6:08pm

I appreciate you all! I wanted to create a "new" post about it to make sure you all saw it!
The idea of surgery serms best, gotta get "Hefty","Big Daddy From Cincinnati"
Out of me! Then the continuance of Nivo will be less stressful (not that i did stress) but, you know...

Im Melanoma and my host is Mike..

www.covvha.net

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MelanomaMike's picture
Replies 16
Last reply 10/2/2018 - 11:20am

Hi guys, im back, well, Dr Rodriguez super cool guy! I felt relaxed with him..the idea of Radiation is out the question, his Knowledge of Melanoma shows that Radio Frequencies does not penetrate melanoma tumors very well, the Brain yes, at a high doses but to the lung, not so much, and my tumors location, not good idea...
Surgery is probably my best option (for the 5.4cm Tumor in my RLL, he is to meet with his colleagues here in a few days & will present my case. As far as treatment either before or after "or" even "instead" of surgery, that IL-2 (Interlukens) crap is all he pointed to at this point. However, if we did do the surgery (on the big sucker 5.4cm) & remove it, we could still continue the Opdivo after i heal, for it was working on all other tumors, i have ONE defiant tumor screwing it all up for me!
Im BRAFF Negative, the test was done by the way...
A bit to think about ay?.. Ill come back later guys...love ya guys..

Im Melanoma and my host is Mike..

www.covvha.net

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AmberM's picture
Replies 2
Last reply 10/1/2018 - 6:38pm
Replies by: AmberM, Janner

Hi all,

I have a very suspicious suddenly black/purple fast growing nodule on my back and am being seen tomorrow in Derm for a biopsy. In the past when I have had a skin biopsy it's been shave biopsy. I am staying away from "Dr. Google" but have read some here. Is it better/prefered to have a punch biopsy? I want to make sure I am the best advocate for myself at my appointment tomorrow. I don't want to just go with a shave biopsy if a punch is better.

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Anonymous's picture
Replies 10
Last reply 10/3/2018 - 4:49pm
Replies by: dbJoe, Janner, Mark_DC, Edwin, bjeans, Bubbles, mandyjill, iskitwo, Anonymous

Aloha!

My dad (age 87) was diagnosed last month with melanoma. He says doc did not tell him what stage.

But, the primary site seems to be a spot on his back, with several others at various locations. It was diagnosed when he went in to have a chicken-egg sized lump removed from under his arm. It was malignant. Doc says it came from the spot on his back.

There are several other cysts/tumors in his arm. Doc wants to remove them, but there is a good chance the surgery will leave his arm paralyzed. So, he does not want to do it.

He is saying, "Let nature take its course."

He also regularly visits a friend (age 70+) who is doing chemo, so Dad does not want to go that route, either.

I suggested we look at immunotherapy and/or radiation.

Anyway, right now, I would like to learn:

What is the progression we can expect if we "let nature take its course"?

He feels great right now, not at all ill. He is imagining that he will just blast through to the end, and then get lethargic, go to bed, and fade away while sleeping. 

Is that realistic?

Would radiation prolong his active life? Websites say it relieves pain. How?

He is asking my advice in decision making, but I do not have sufficient information to do that.

I am, by nature, a "Miss Fixit," and problem solver. But I will support whatever decision he makes. 

I guess I am looking for the best way to enable him to life the longest active life possible.

Thank you for any advice, information, suggestions. . . 

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MelanomaMike's picture
Replies 7
Last reply 10/1/2018 - 6:50pm

Hi Family! Well, in a few hours ill drive down to see a fresh set of Oncological Eye Balls & discuss a new War Plan! Man! Comon'!! Somethings gotta give here! I mean ya im STILL alive (so ive heard) but Man! My chemical "key" my combination to this Hurt Locker is out there somewheres!. Love ya guys! Ill keep ya posted afterwards...

Im Melanoma and my host is Mike..

www.covvha.net

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