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
Anonymous
Replies 6
Last reply 5/28/2012 - 10:26am
Replies by: becky15, natasha, Anonymous, Janner

 

I am from the UK and have recently been diagnosed with an SSM stage 1a on my leg, Breslow depth 0.72mm, no ulceration, no mitosis, no regression.

I am very confused about my pathology report which states an "invasive radial growth phase" for the growth phase but also Clarks 4.  This seems contradictory to me and my consultant has not been much help in clarifying this, saying that it must have a vertical growth element.  Further down on my report it says, against where the mitotic rate and tumour infiltrating lymphocyte figures are shown, "(VGP only) - N/A" and then goes on to note in brackets "0 per mm squared" for mitotic rate and "non-brisk" for TIL.

Can anyone clarify this apparent contradiction?

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Snickers60's picture
Replies 14
Last reply 5/28/2012 - 10:05am

Anyone have this ?   It's nowhere else on Wayne's body, but his face looks like he BURNED IT.    He started taking ZEL on Monday night.  Poor thing was convinced he had read to take 2 pills in the morning, 2  at night......that is not what the script says.    It is 4 in the AM and 4 in the  PM, so he started that on Wednesday night, when he realized his mistake.   The rash began almost immediately. Has gotten worse.   HE HAD NO SYMPTOMS ON 2 - 2 X D !  

Can anyone give me input on this ?    Is there a ZEL Number to call 24/7  until he can get back to them at MDA !

Also, where do you all find SUNSCREEN clothes ?    Good choices and good prices ?

WORRIED........

Thanks so much,
Nancy caretaker of beloved patient and WARRIOR WAYNE  :-)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Hi All,

I'm on what I think is a fairly heavy CT scan rate of every 60 days, and have noticed that over time the CT scans are causing a "hangover" effect almost akin to when I was on Interferon.

Drinking the barium is no problem, the injection of contrast causes the normal heat flush and odd taste/smell. Then as the day progresses I feel worse and worse despite drinking 56+ ounces of water during the afternoon.

Anyone else out there have the same experience?

Carpi Diem

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jmmm's picture
Replies 18
Last reply 5/27/2012 - 10:31pm

My husband will be starting Zelboraf in the next week or so.  What "real" side effects can he expect--I know we have the information the dr. read us from the website (my hubby is the 1st patient his doctor has on zelboraf).  We just want to know what other patients are experiences and any suggestions on things that can help him feel better on the medicine.  Thanks for any help!

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Erinmay22's picture
Replies 9
Last reply 5/26/2012 - 9:39pm

So I just had my latest scans.  I've been lucky to be clear since I had nodules show up in my lungs Jan 2011.  This time the scan shows a small section in my small intestine that states there is significant thickening of the wall?  I also have several lymph nodes around that area that are swollen.  

I must have some sort of small GI bleed since my hemoglobin was down to 5.6 on Tuesday when I went in for my appointment.  Got hospitalized to get 3 units of blood and responded very well to it.  

Sounds like the plan right now is to go ahead and start me on Zelboraf.  We already know I'm braf+ from my lung biopsy in March 2011.  There was talk of surgery but they don't now if they would get all the lymph nodes.  So the plan is to start with treatment.

Guess I'm wondering what thoughts/suggestions people have on melanoma in the intestine.  I've been told that it's a common place?  Wondering if there is a possiblity it could be something other than melanoma?  I know the only way to know is a biopsy.  Surgeon is saying that the only way to biopsy is to cut open and then might as well just take the section out...  I have lots of questions for my next appointment.  

Thanks everyone!

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Sherron's picture
Replies 3
Last reply 5/25/2012 - 8:11pm
Replies by: WendyPam

Has anyone heard how his surgery went this morning? 

Take Care,

Sherron,wife to Jim FOREVER

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deardad's picture
Replies 4
Last reply 5/25/2012 - 7:44pm
Replies by: deardad, Woodlands, Phil S, benp

So Dad had his first round of WBR today.....seemed fairly straight forward but now 4hrs later he is extremely tired and asleep in bed. He said he had slight blurred vision and a headache?

I know these are all possible symptoms, but so soon?

WBR warriors please come forward with some experiences.

Thanks in advance 

Nahmi from Melbourne

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Hello everyone,

A major TV news network is doing a story on how the Supreme Court’s decision on health reform will impact with people with serious illnesses.  One provision within health reform is temporary insurance coverage for people with “pre-existing coverage” who have already been denied insurance coverage.  The program is called Pre-Existing Condition Insurance Plan (PCIP). If you have melanoma and obtained insurance coverage thru this program, please contact Lauren Smith who is supporting our communications efforts atLauren@jpa.com.  Please respond by Wednesday evening.

Thank you to everyone within the MPIP community for your help in educating the public about melanoma!

 

Shelby - MRF

 

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Phyllis in IA's picture
Replies 9
Last reply 5/25/2012 - 9:15am

Just wanted to post this info to show that there is hope, even when the prognosis looks pretty grim.  My husband was originally diagnosed in 1985.  The primary was removed by our small-town general surgeon, who said the margins were clear so not to worry.  We went on our merry way, thinking this was no big deal.  Then in November of 1998, 35 nodes were removed from his armpit, and all 35 were positive for melanoma.  A PET scan revealed numerous more enlarged nodes in the supraclavicular region, and altogether he had nearly 60 positive nodes.  He went on to do 4 rounds of biochemo, and had a complete response.  (All 24 nodes removed between rounds 2 and 3 contained black pigment from the melanoma, but no viable cancer cells)  So as of February of this year, we are celebrating 13 years of NED!  We are so very thankful to have been so blessed with this time, which at one point did not seem likely to happen.  At original diagnosis, we had 3 small children, and we can now say we have together seen them graduate from college, have attended their weddings, and welcomed 4 grandchildren.  I just wish that everyone could have the same outcome, as I hate to see all the sadness and suffering, with young lives cut short and losing good people way too soon.  My desire in posting this is that I might give someone early in their journey a ray of hope that things can turn out well, even when the odds are against you. 

Blessings,

Phyllis

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Replies by: Anonymous, john partrick michael murphy

https://www.facebook.com/home.php#!/media/set/?set=a.2481994291537.2113457.1302967109&type=1                             this is his Melanoma Story in pictures. Pray for Steve.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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noisy77's picture
Replies 3
Last reply 5/24/2012 - 11:50pm
Replies by: ockelly, noisy77, Janner

This may be a dumb question but what is the difference between macrometastasis and micrometastasis.  I have never heard my mom mention this just that she has acral melanoma with 5 nodes positive.

 

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stepmomcathy's picture
Replies 2
Last reply 5/24/2012 - 11:45pm
Replies by: Linny, deardad

Hello, my stepdaughter Rhonda has been  diagnosed with stage 4 Metastatic Melanoma in Aug 2011. She has had a brain and lung tumor removed. She has been on Zelboraf for 6 mons and is doing great. She has been thru the side effects like, rash, loss of hair and the worst for her is getting sun burned so easily.

Does anyone have any remedies to put on the sunburned areas to relieve some of the pain. Right now she is burned with blisters on her foot and bottom lip. She covers up with sunblock, clothes and umbrella. We have tried almost everything to put on the burn, with no luck in taking care of the prickly feeling she has.

Thank you for any help.

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Replies by: Janner, La Luna, WendyR3

So I am going absolutely nuts waiting for my biopsy results. I had a basal cell in 2006, so I'm used to biopsing any strange spot, but this one was different.

The spot started a year and a half ago, it was a tiny black spot that hurt and felt like a splinter. The size of a splinter, too. Tiny. I have a black metal swing that had broken a little, and I thought that I had sat on a tiny metal shard. My friend tried to get it out to no avail, and a tiny bit of pus came out at that time. Over the next few months it bled occasionally and hurt sometimes, I thought it was a trapped metal splinter. Did not have the ABCD's of melanoma so never crossed my mind that it could be cancerous. And did I mention it was tiny.

Fast forward to last week. My hand brands across my leg and I saw a black spot, raised about 2mm in diameter. Obviously not a splinter. And a lot bigger than the tiny dot of a few months ago. It was round and a little tender. I scratched at it and part of it came off and it started bleeding a lot. I looked online and scared myself with nodular melanoma pics. It looks exactly like some of the pics.

So I rushed into derm's office and got a biopsy. He mentioned it could be many things and that sometimes basal cells can have pigment. My normal doc is on vacation so I don't know how I feel about this guy. He told me not to" lose sleep" because whatever it was it was small, but from what I read about nodular that doesn't really matter.

Anyway, I'm going nuts and I feel like I can't stand another moment of waiting. It will prob be a couple more days. I feel sick I'm so stressed. I have 2 young children.

Did anyone have nodular melanoma that felt/looked like a black splinter?

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Anonymous's picture
Replies 2
Last reply 5/24/2012 - 9:13am
Replies by: Gene_S, gabsound

Hi,

I am new to  this forum. Thank God I found all you wonderful warriors.

I am stage 4 melanoma patients. DX in 2009 and have had multiple surgeries. My first systemic treatment is IPI (yervoy). I just had my 2nd infusion.

Yesterday, my blood work showed elevated liver enzymes (Alk Phos, AST, ALT). My doctor told me my liver enzymes (Alk Phos, AST, ALT) were elevated out of the "normal range". He told me that I might not get another IPI infusion because my immune system is causing these liver enzymes to be elevated. I will have my blood tested again in 3 weeks.

I need your help with information regarding elevated liver enzymes (Alk Phos, AST, ALT).

Anyone on IPI or any other drug that caused elevated liver enzymes. What happened to your liver (liver enzymes)? Was the drug stopped or did your immune system just stop inflamming/attacking your liver. Did you liver enzymes (Alk Phos, AST, ALT) go back to "normal"

I am not sure if my liver is permanently damaged (or will become permanently damaged) because of the drug. Is there anything that I can do (perhaps eat certain foods, supplements, ets) to help my liver. I am very worried.

Thank you so much for taking the time to read my post & to give me any feedback & advice.

Katherine

 

 

 

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bella001's picture
Replies 5
Last reply 5/24/2012 - 1:08am

Hello!

 

I was dx w/ stage 1 Melanoma is 2004.  I had a WLE and have been NED since.  Last year I learned I have Celiac.  After doing a ton of research on that I'm finding more and more info about a much higher Melanoma rate among Celiacs.  It's relating it to a vitamin D problem.  Anybody else have Celiac or gluten intolerance and also Melanoma?  Just curious if I'm unique or not.

 

Thanks!

 

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