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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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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Bradley75's picture
Replies 14
Last reply 9/5/2016 - 4:04pm

Two months ago I had my regularly scheduled PET/CT and the discovered a hot spot.  At that time it was 10mm by 5mm with SUV max of 3.2.  We opted to do nothing and re-scan in two months.  The re-scan shows the hot spot again.  This time it measures 13mm by 12mm with SUV max of 6.2.  The are calling it a nodule or lymph node in the perirenal fat inferior to the right kidney.  My onc was very concerned with this and started our discussion with the dreaded, "sorry to have to tell you this, but...."  I am curious about what people on this board think about it.  I get the feeling that it is the beast making a third appearance in my life, but I never like to believe that until it is actually proven.

 

My onc did say it is for sure time to do something about the nodule/lymph node.  She told me that I have options.  The first option is have it surgically removed.  It sounds like the removal should be a pretty simple procedure.  The other option discussed was Keytruda.  I have read tons of stories on here about the various immune therapy drugs and all the success people are having with them,  I am really excited about them and think they provide so much hope for the future.  Where I am struggling here is does Keytruda make sense when there is only one spot that can easily be surgically resected.  Anybody have an insight or experience to share that might help with my decision?

Thank you for taking the time to read this. 

Brad

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marcelwshorts's picture
Replies 1
Last reply 9/2/2016 - 9:37am
Replies by: Ed Williams

Hello,

I'm new to this so bear with me. We found the first melanoma on my back in 2014, during a normal physical. (I am  caucasian and have many moles). 10 months later we found a second one. Now I'm going to the dermatologist every three months. This time they want me to get set up with a mole mapping appointment. So that will happen in the next few weeks. 

However, the only reason they found the second melanoma so soon was because I asked my doctor to take one mole off to ease my paranoid mind. Unfortunately it came back positive for melanoma. 

Since then they have only done one biopsy (which thank goodness was negative). I try to wear sun screen every time I go out. I go every three months to get skin exams. But I still feel like a ticking time bomb. 

So I guess what I'm asking am I doing everything that can/should be doing? 

Thanks 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/2/2016 - 11:55am
Replies by: Bubbles, Ed Williams, MoiraM

Has anyone seen any research on what may make someone more likely to respond to treatments (specifically ipi and radiation).  Our dietitian said not to have too many fruits and vegetables during radiation-something about too many free radicals.  I know this is the million dollar question, but just curious what we can do to improve the odds-3c.

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SueDan's picture
Replies 2
Last reply 9/2/2016 - 12:05pm
Replies by: SueDan, Anonymous

My husband (Dan) was diagnosed stage 1 in October 2014, but the Drs. had varying opinions on the length of time to have 3 month follow-up visits so I'd appreciate any insight anyone has.  Dan wants to cut down to 1 or 2 visits a year now, but that makes me nervous as he always has something frozen or biopsied at every 3 month visit (biopsy results are anywhere from benign to severely atypical).  Thanks for any info you can give us!

Sue Byre

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Joycem's picture
Replies 7
Last reply 9/2/2016 - 5:20pm
Replies by: Joycem, Bubbles, Ed Williams, Anonymous

Hi

While obsessing/second guessing over my decision today to decline adjuvant interferon recommended be oncologist, I came across this article that I felt was helpful, but I am unclear what "translational oncology" (in "the Oncologist-Journal of Translational Oncology") means. Is this a mainstream reliable source in your opinion? 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I'm guessing since author is associated with Sloan-Kettering this is pretty solid source? 

There seems to be some murkiness as to whether I am properly staged at 2C or 2B according to my oncologist, (which significantly impacts my prognosis.) He said he was going to seek clarification from pathologist. I guess what is, is tho, and I don't think it would change my decision or follow up plan.

Best to you all, 

Joyce

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casagrayson's picture
Replies 2
Last reply 9/2/2016 - 2:01am
Replies by: Anonymous, jennunicorn

I was just looking over my husband's pathology report from his first primary.  The report says that the lesion is melanoma in situ.  However, it is 0.4mm deep, references a Clark's Level II, and has a mitotic rate of 1-2. 

I think I remember Janner saying that in situ has no depth listed.  Is that right?  What would be the staging on this lesion?

Strength and Courage,

Susan

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Aaron's picture
Replies 11
Last reply 9/5/2016 - 9:44am
Replies by: Momofjake, Aaron, BrianP, JoshF, KAF, Bubbles, Anonymous, Julie in SoCal

"Significant shrinkage" generally aren't words you like to hear but I'll take them today. Have gone through a lot: damaged pituitary gland, vitiligo, now the suspicion of pneumonia (do not believe it is melanoma) but I'm beating the cancer right now and will continue to with the help of God. The clinical trial may keep me on board for now despite my responses but it is unknown when my treatments will resume.  Now to start antibiotics 

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