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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arthurjedi007's picture
Replies 8
Last reply 1/8/2015 - 11:04am

My doc said yesterday if my tumor sample tests for a certain h receptor I can do this trial. Apparently only 20 percent of us have it.

They take the tumor sample and grow the t-cells. Then two days of chemo to wipe out existing t-cells. Not sure If that is the same thing as dropping white blood cells to zero. Then they inject the new t-cells. When it works he said it is fantastic.

when I said that sounds like the til at nih he said the main difference is how they grow the cells.

So I dunno if this or the til at nih would be better? Very confusing to me.

Artie

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_Paul_'s picture
Replies 7
Last reply 1/8/2015 - 12:02am

I tried to Google this and the best I could find was that these are apparently areas of the lung that contain sub-solid matter. My PET/CT from 4 months ago had a bunch of them, now they are no longer seen. Can I take this to mean that multiple tumors in my lungs have disappeared?

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Ok so apparently my slides were examined by Raymond Barnhill from UCLA! He is a Melanoma expert! And he can't even determine the melanoma ... But he recommend the SLNB and the wide excision. Does any one know this expert at all?!  What can you tell me about him? My surgery is next Tuesday I have to have a skin graph on my leg ... They are taking skin from my stomach... Dr said I will have to have a cast for 1-2 months and be in a wheel chair in order for the skin graph to heal properly... So far I just know that from the sentinel node biopsy I will have a drain... Wow all this Is so overwhelming...

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Jsneathen21's picture
Replies 4
Last reply 1/7/2015 - 6:21pm

www.gofundme.com/jrmqn4

That is my account I wasn't expecting at all to be off work for 3 months .. I have to have a skin graft and it requires me to be in a wheel chair for almost 3 months ! God bless anything helps! My personal email is jennifersneathen21@yahoo.com

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Lyric17's picture
Replies 27
Last reply 1/7/2015 - 4:37pm

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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Anonymous's picture
Replies 3
Last reply 1/7/2015 - 4:01pm
Replies by: Anonymous, JustMeInCA, Janner

What are the statistics/odds that someone with mucosal melanoma will develop a new primary that is cutaneous?  Does anyone know? 

If you have superficial spreading melanoma, is it likely that you would develop nodular melanoma somewhere else, or more likely that you would develop the same type?

Has anyone had experience with this?

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Bubbles's picture
Replies 10
Last reply 1/7/2015 - 11:26am
Replies by: rick1981, Anonymous, Bubbles, Cooper, arthurjedi007

Thought many of you would appreciate this information regarding the positive synergistic effects of radiation and anti-PD1.  Here is a synopsis an article just out:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/srs-combined-with-anti-pd1-makes-things.html

Here are a couple of older articles regarding the positive effects when radiation is combined with ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

And Artie....YOU ROCK!!!  Happy holidays!  celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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arthurjedi007's picture
Replies 21
Last reply 1/7/2015 - 10:21am

I just don't get it. I'm not sure what I'm asking. I probably shouldn't post this and bother everybody. It is just very upsetting to me.

Back in November once my local doc got them to compare with the correct scan (ie: 11/3 with 8/13) the report basically said mild growth. No new stuff. And listed the left scapula tumor had grown.

My Mayo doc wanted a copy of the scan and I just got their report which seems more grim. For example what they say has improved is what was radiated. The spot in my head and my lower thoracic and upper lumbar. Sooo has pd1 quit working for me? I've only been on it since 5/21. I just don't get it. I'm especially concerned by the midthoracic spine because that was listed as shrinking in the 8/13 scan but here it seems to be increasing. It is the one that almost paralyzed me last year and has already been radiated twice and surgery they can't do on it cause if they shut off the artery to it would also shut off the spinal cord thus paralyzed. So if that gets bad again then it is the end of the ball game for me.

I know I don't have much strength or energy. I also have to take 2 pain pills a day just to get by mainly due to the pain in the shoulder and collar. But if I don't do much I feel fairly well. I can go to the buffet ok and due to my walking issue with the hip and leg tumors I can ride the cart and the grocery store fine but not walk it anymore. But I do tire out very quickly. I used to be able to walk 2 miles a day but with the leg and hip issues I only walk about 4 five minute walks a day.

I thought the keytruda was working great but now with this report I dunno what to think. I was planning to stay on pd1 for quite a long time and get my shoulder radiated soon as the next step. Now I just dunno. I'm totally dumbfounded. If pd1 is no longer working the best option I have that is geographically possible from Saint Louis is travelling to Chicago and hope and pray they let me into the pd1/anti-lag-3 even with my limp. But without radiating this shoulder first such a 10 x 9 cm tumor is just too big for my immune system to handle. Also my ldh has been steadily increasing ever since last March and is up to 722.

Or maybe I'm jumping to conclusions and the pd1 is doing good like the Saint Louis report said. After all this Mayo report doesn't list anywhere near the 30 or so tumors I have. I just don't get it how there could be such a difference in interpretting the same scan. I know last year Mayo interpretted a lung issue as tumors but it was really inflamation so I'm not really concerned about that since I have no breathing issues at all even when I do my deep breathing exercises. From what I've read with immunotherapy it can be tricky to interpret the lungs.

Sorry to bother everyone with this. I'm just totally dumbfounded. I see my Saint Louis doc tomorrow. I know he wanted me into NIH back in November when they mistakenly compared the 11/3 scan with the 4/23 scan but my hip and leg went out so they wouldn't let me in. Since then he's been fairly quiet on plans except I want to radiate my shoulder and he wants to do some kind of tumor sample first but that's already been an almost 3 week delay so far. So I dunno. I just don't get it. I think we are probably due for another scan in the next 3 weeks so I dunno.

 

Artie

 

Here's the Mayo report.

EXAM: Interp of OS NM PET Scan dated 11/3/2014.
COMPARISON: Mayo Clinic PET/CT 8/13/2014
CLINICAL INDICATION: Restaging metastatic melanoma, subsequent
treatment strategy.
IMPRESSION: Overall probable progression of metastatic disease
FINDINGS: Interval progression of some of the bony metastatic disease
with new or increasingly FDG avid lesions located in the left ischium,
right humerus, midthoracic spine and left sacrum. Additional FDG avid
lesions are present in the mid right femur and proximal left tibia.
Other pre-existing metastatic bone lesions have improved, for instance
the right posterior occipital bone and several vertebra in the lower
thoracic and upper lumbar spine.
The large bone and soft tissue metastasis in and around the left
scapula has increased in size and FDG uptake, SUV Max 15.0, previously
11.8. There is also been an increase in the size and extent of FDG
avid lymphadenopathy in the left neck and left supraclavicular fossa.
New pleural metastases in the posterior left lung and increasing FDG
avid soft tissue nodule adjacent to the posterior aspect of the upper
pole of the left kidney.
No abnormal uptake in the liver or cerebral cortex. Incidental CT
findings are generally unchanged.

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ymellin's picture
Replies 4
Last reply 1/7/2015 - 10:10am
Replies by: Anonymous, Janner

When have a diagnois of melanoma is it best to seek out a doctor who speicalize in just melanoma cancer?

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Replies by: Anonymous

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TesteroneXL

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Replies by: Anonymous

Everyday get to listen to the teachers there with the children you can't listen to the parents terrorizing your child's play at Ministry are with the other neighbor kid she grotto you listen to the doctors I'm you know I mean its hard raising child start raising more human show up tile and the bigger support system you have the better of your enemy and the more children or people who love your children pair of their going to be seven-member that when you know you like mad at familyUltra Thin Completemembers such as your mom or your mother-in-law I'm here for the kids to see them remember that the more people who love your child the better of that town is going to be I think that's very important we're going to exercise degum name ion I'm terrible at exercise I gingerly way between 120 to 147 I'm right now I'm about 124 on I'm little flabby in this to make I probably have over too much at night Ibis that I did not exercise sometimes I what they don I should get more that now I just an exercise that often I downright I have a really bad angle and be and my right leg and I'm I can't really read I can't walk for extended periods of time killed a.

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Anonymous's picture
Anonymous
Replies 0

Can one of you admins please block this idiot?

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Sherman's picture
Replies 10
Last reply 1/7/2015 - 4:35am
Replies by: JustMeInCA, kylez, Sherman, washoegal, DZnDef, Anonymous
Recently diagnosed with Metastatic Melanoma. A brain tumor was found in the cerebellum and CT showed multiple nodules and a large mass in my lungs. After lung biopsy I was diagnosed with Metastatic Melanoma and referred to Dr. Omid Hamid in St. Johns medical center. Does anyone have any experience with this Dr or any recommendations to another oncologist? I hear good things about this melanoma center but Dr. Hamid has only 2.5 stars out of 4. Any advice at all? Please help.
 

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rick1981's picture
Replies 9
Last reply 1/7/2015 - 4:07am

....panRAF inhibitors.

Stage 1 trials just starting. These pills seems similar to BRAF/MEK in attacking proteins but use multiple paths making them potentially impossible to become resistent too. Promising!

(I can't paste the link unfortunately, anyone else having issues pasting text on MPIP?!)

 

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