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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Anonymous's picture
Replies 7
Last reply 2/10/2017 - 2:46pm
Replies by: Sheepsandcows, MaPerny, Anonymous, _Paul_, David McCaw

Melanoma stage 4 with metastasis in lungs and spine

BRAF mutation

Not responder to IPI (Yervoy)  PD-1 Inhibitor (had to be suspended) and BRAF/Mekinist combo. Waiting to be approved for a new trial Atezolizumab and MTIG7192A

Residence: Canada

Thank you!

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Replies by: Anonymous, JustJaren

Hi All!

RIght now, after the WLE and SLN removal, the SLN came back with '3 to 4' cancer cells in the subcapsular region. Of course, the surgeon now recommends an inguinal lymph node removal. 

1.- I am having a hrd time committing to this surgery, knowing the original lesion was 0.86 with a mitotic rate of 1- I have an 80% chance of no other nodes being involved- should I torture my body and risk major complications for an extended life? (statistics say recurrence within 24 months as opposed to 36 months with the surgery)

2.- If I DO take the surgery- what were your experiences for recovery- specifically returning to a desk jobn, how long before you can drive, etc. 

 

I am overweight and know this increases my chances of complications significantly- BUT I am MOTIVATED during recovery- I had a partial knee replacement last year that I was off th emeds in days and back to work. I relaize this is very different, just lookng for some experiences/article references regarding NOT getting the surgery, patient experiences, etc. 

Much love to everyone!

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Daughter of Patient's picture
Replies 4
Last reply 2/8/2017 - 4:28pm
Replies by: jahendry12, KAF, MikeW, Tim--MRF

My mother was just diagnosed with malignant mucosal melanoma of the sinuses last week. She lives in the north suburbs of Chicago. She has an initial appointment with Dr. Jon Richards on Monday. Any recommendations for a doctor to obtain a second opinion in the area? Many thanks in advance.

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Bmine102793's picture
Replies 6
Last reply 2/7/2017 - 7:38pm

So we got ct scan and mri back and cancer has not spread and there was none found in the area where he had his tumor and lymph node removed. But because of the possibility there may be cancer cells floation around that arnt showing on scans we will go to cleveland clinic for a 2nd opinion and to discuss trearment so cells wont grow more. Has any one had a similar experience? What was your stage of remission. Is it possible it will stay gone for good

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Sophietx's picture
Replies 5
Last reply 2/7/2017 - 10:33pm
Replies by: Sophietx, Janner, UBContributor, Anonymous

Hello,

I had Melanoma in situ in Nov 2016. WLE and clear margins. I still get acne sometimes on my body and face. A pimple showed up about 0.5 cm near the scar. It showed up overnight. And it looks like it's healing now. It has been few days. How do I tell reocurence? Or satellite mets etc? Thanks 

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Bmine102793's picture
Replies 5
Last reply 2/7/2017 - 3:05pm
Replies by: Hukill, Bmine102793, Anonymous, Shaneswife, casagrayson

So we get final results today on how far progressed fiance is of course he tells docs he feels fine no symtoms ect. Which is not true hes had a persistant cough for about 6 months now he always says its just a cold obviously its not and hes not a smoker. Another thing ive noticed is hand tremors he says its his nerves but its constant and doesnt come and go has anyone ever had this?

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Nicklindner's picture
Replies 10
Last reply 2/8/2017 - 7:50pm

There have been a quite a few questions related to this combo lately and will probably only continue to be more. I thought it might be helpful for everyone to see what the response rates look like from members on this board. Who has taken this combo?  How many treatments of the 4 did you manage?  12 week scans show stable or tumor shrinkage? Did you need to move onto anything else after just opdivo?  Were you considered a full responder?  

For me personally it is one thing to read clinical studies but another thing entirely to hear personally from the Warriors who have gone through this journey before some of us newbies.   Being 33 diagnosed 2 months ago with stage 4 I can't get enough positive news and hope from this site unfortunately I am sure there will be many others like me, new to this site, that could use that hope too  

Thank you!

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CindyCo's picture
Replies 1
Last reply 2/6/2017 - 10:17pm
Replies by: Bubbles

Apparently these don't respond to PD1?  Hoping that something is in the pipeline for people with those mutations.  My mom starts Keytruda on Wednesday and we have no idea what her JAK status is.

http://newsroom.ucla.edu/releases/ucla-researchers-discover-why-some-can...

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Bmine102793's picture
Replies 2
Last reply 2/6/2017 - 10:22pm
Replies by: UBContributor, Anonymous

So mri showed small calcification on feontal lobe of brain but report said it may have nothing to do with melanoma and not to worry but shouldnt they atleazt biopsy it to be shure?

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Bmine102793's picture
Replies 9
Last reply 2/8/2017 - 6:10pm

Mri on fiance came back clear besides a small calcification on front lobe which could be do to many years of sports but sense he is currently diagnosed 3A till we get petscan results tomorrow they will continue to monitor it. Now the doc said he wants us to go to clevland clinic for better melanoma care and suggested that Yervoy(ipilimumab) while more toxic than other treatments can improve of all survival but 53% of patients who did the treatment dropped out due to toxticity. I would just like some insite on it please

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My 14 year old daughter had an odd looking mole on the back of her upper arm which I hadn't noticed before. It was irritated and we went to a dermatologist, Dr. John Maddox in Greenbrae, CA to check it. He shaved it off and sent it for a biopsy. Two weeks later he called and said it was a Spitz' nevi and the rest should be excised from her arm as a precaution; and that the lab was doing further tests. He called back just now (another 2 weeks later) and said that it was a Spitzoid melanoma and my daughter would have to have it cut out immediately and then they would do a Sentinel Node Biopsy and a CAT scan and a PET scan to see if it had spread anywhere. He referred all further questions to the doctor who did the biopsy and who I think will do the surgery, Dr. Mohammed Kashani, Director of the California Pacific Medical Center - Center for Melanoma Research in San Francisco. I'm waiting for a call from him. 10 AM Mon. Feb. 6, 2017. Any advice anyone can give me would be appreciated. I need to know the right questions to ask. I need to know how to talk to my daughter about this - my beautiful, straight A, rower athlete, sweet, loving daughter. I need to get my head together and figure out the right and encouraging way to frame this for her.

Julie

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_Paul_'s picture
Replies 18
Last reply 2/10/2017 - 6:58pm

Wow, where to start. My cancer continues to grow and spread. I am in Seattle, back at the hospital. It was simply getting too hard to do the most basic of things back home. I have a surgery planned tomorrow to place a stent in one if my kidneys. It can't drain urine because it is blocked by a tumor.  I have gained about 20 pounds in water and I am bloated from my toes to my midriff. This big tumor in my lower right lobe is squeezing a large part of the lung shut, which is developing bronchitis-like symptoms, I.e a wet cough.

I will fly back to LA where I have a room waiting in Palliative Care.

The plan is to consent the trial on Thursday and receive my first infusion the following Wednesday. It feels like a race. I just need to survive long enough to see if this new treatment can turn things around. I have put up the best fight I know how. I have so much to live for, not to mention the awesome story I would have, but I am just going to do my best and hope for the best.

- Paul

To exist is beyond fantastic.

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I didn't get a chance to mention in the post after Dads last Dr. visit, some of her recommendations. First of all the doctor that Dad is primarily seeing is Dr. Freeman, she is not an MD but a DO.  I have done the research and found out that they are basically the same as an MD (Same amount of med school), but they have extra schooling for a "whole body approach" combining western medicine with osteopathic medicine,  including manipulation of the bones etc.  Dr. Freeman doesn't do any type of adjustments (in fact she recommends NO chiropractic "cracking of the bones" for cancer patients), but she certainly has taken the whole body approach, which we absolutely LOVE. We really appreciate that she has literally checked Dad for a lot  of different things (ie: fungus) and we have been able to "rule out" many things.  Overall, Dad is in excellent health (aside of Melanoma).  I think this will definitely be to his advantage in the future.  I asked Dr. Freeman of all of the supplements out there what she thought to be the most important, because there are literally thousands of things you can take and everyone has a recommendation.  The two things she said that were important were: Turmeric & Probiotics.  I found this interesting, I knew the probiotics would be beneficial to help prevent side effects, but have heard a lot about turmeric, but never really did much research.  She said that there have been studies that have shown using Turmeric while on Immunotherapy can help it to work better (I can't remember her exact wording). So of course Dad is now taking it via supplement daily.

I think it is important for all people going through cancer to really find out what else is going on in there body.  These are just my thoughts and by no means do I think there is a right or wrong way to do things.  What works for one doesn't for another.  

Best. Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/6/2017 - 4:36pm
Replies by: Anonymous, iskitwo, casagrayson

I had melanoma on my foot a year and a half ago.  It was stage II, surgically removed, none in the lymph nodes so I've been Ned since then.  Recently I've noticed a small lump and some pain at the site of the surgery.  Should I be worried?  Can melanoma return at the original site? I know that it typically travels to the lymph nodes, in my case the groin, or to other organs but I've never seen anything about it cropping up at the site of origin.

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Nick C's picture
Replies 16
Last reply 2/7/2017 - 8:37am

Just wondering...has anyone tried holistic/naturalistic approach in addition to their drug therapy, i.e, supplements, juicing, coffee enamas, detox, essential oils, etc? If so, which ones?


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