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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renakimu's picture
Replies 7
Last reply 1/9/2012 - 4:31pm

hello all!

first of all i want to wish you to have the best year ever!!

yesterday my mum told me that she has pain under and around the armpit that she had the full lympadectomy, 

(the doctors told as tha they got out 10 lymphs, arent they few for full lnd?)also she feels at night that her breast it getting swolled, what that coulkd means?i d like to say that she dont have lemphydima in her arm.

thanks a lot for any answer!have a nice weekend!!!

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Rona's picture
Replies 7
Last reply 1/9/2012 - 2:55am

I had my apt with a melanoma Onc and, Dr Hutchins in Ar, and she did not hassitate to suggest Yervoy as my new treatment. With so much chemo experience under my belt she told me that Yervoy would be a breeze for me to tollerate. I am having a hard time believing that, but that's not stopping me from moving forward with the treatment. I am ready to move on with my life and excited to start. 

 

She told me that there were only 2 side effects that would kick me off Yervoy, Colitis and Inflamation of Hormone glans. She also said the most common side effect was itching. 

I am a full time student trying to achieve my BS and when I brought up the blurry vision or discoloration of the skin she shot those side effects down saying that they were a myth. I have struggled for 2 years taking DTIC and going to school full time. I didn't want to start Yervoy and be worrying about papers or group projects at the same time. Her suggestion was to stay in school while taking the Yervoy. 

Needless to say, I dropped my classed this semester after reading your posts. I just don't want to worry about anything but dealing with the treatment. It is very hard for me to believe that I will not be effected physically or mentally by Yervoy. 

Did your Onc tell you the same info? 

-Rona

This chica is Yervoy bound...

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Hi All,

I am 42, married, and mother of two children, a boy who is 6 and my ‘mini-me’ daughter, who is 9. I always thought one day I would join a blog or message board, but I thought it would be to talk about children, the Oakland Raiders or even work. What I never imagined was joining a message board, seeking support and answers for Melanoma, however, here I am! I was diagnosed four days ago and it changed my world. I haven’t been eating or sleeping, and have been distracted by this all day at work. Of course, I am thinking the worst and hoping for the best. I must say though, of all websites I have been reading about and poking around on, this one is the most positive, supportive, knowledgeable one out there. So thanks for having me.

I don’t have much history with melanoma, however my mom had Thyroid cancer 5 years ago, my dad had a basal cell removed from his face 4 years ago, and my aunt (fathers sister) had a mastectomy 7+ years ago. All are 60+ and come through their cancer with positive results. I have always been, should we say, concerned about skin cancer and suspicious moles within the past 15 years. I am considered fair skinned and do remember a burn or two when I was in my 20’s.  I was at the dermatologist approx 7 years ago, had a full body scan and everything was fine. About 3 years ago, I had a couple suspicious beauty mark/moles removed, sent for testing, which came back fine. Now to today, I had a mole, dark brown in color, the size of a pin head on my right inner thigh. I didn’t remember having it when I was younger, but, thought maybe it had always been there. About three months ago, it was irritating me. Never bled, but was sore. I thought maybe I cut it shaving etc. so I waited a few weeks to see if it  changed, got worse etc. which it didn't, was kinda just there.When I felt it, it was smooth and ever so slightly raised. I figured, can’t hurt in getting it looked at. Even the doctor didn’t seem concerned; however, did a punch biopsy that came back positive. Invasive Malignant Melanoma and I haven’t been the same since. Scared!  I have read a couple posts where it’s been requested to post the results of the pathology report, so here it is. Clark Level is IV, Breslow is 1.2MM, Regression is Absent, Ulceration is Absent, Mitotic rate is 1 per square millimeter, Microscopic satellites are Absent, Vertical growth is present, Vertical growth Cell type: Epitheltoid, Lymphocytic Infiltrate is Minimal, Lateral Margin is involved, Deep Margin is Involved, Re-Excision with appropriate clear margins for Invasive Malignant Melanoma is recommended. Melan-A stain is consistent with this diagnosis. So what does is all mean???

I went back to the dermatologist with these results and he just kept commenting that he was surprised because the mark was so small and that I was Stage II. He didn’t give me much reassurance and suggested that I schedule with a Melanoma Specialist (which I didn’t need him to suggest as I did that the day after I found out). The dermatologist told me that they would be doing a dye test to see if the tumor has attacked any lymph nodes. He mentioned if one tests positive they would take more and I would then be considered Stage III, then talk to me about Chemo or other treatments. He glanced over the remaining moles that I have and commented ‘normal’ – ‘normal’ – ‘normal’….wouldn’t they all be suspicious at this point?? I want them all biopsied and removed if necessary…I just don’t get why I didn’t get a more thorough exam?

I just keep thinking that I must be here for my kids. I have not told anyone in my family. The only reason my husband knows is because I wasn’t home when the doc called with results and he pushed the doctor to tell him. I really don’t think he gets the potential severity of the situation anyway. I have not told my parents, siblings or his. My parents would be devastated, they live out of state and I want them to live the rest of their lives happy, not worrying about me. I realize that there are people on this message board with more advanced, serious conditions, so I appreciate any guidance or recommendations of next steps. I continue to try and have the attitude that it is what it is and be prepared to fight for my life and family, if that’s what the outcome is. You all are in my prayers and wish we were meeting under better circumstances.

Kelli

Life is ten percent what happens to you and ninety percent how you respond to it. Lou Holtz

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lyndaloo's picture
Replies 2
Last reply 1/7/2012 - 11:32am
Replies by: lyndaloo, lhaley

Hello - My husband had his third round of ipi last Friday.  I have tried to fill in his profile but cannot get it to work so here is a brief history, he had lung surgery last February and brain surgery in May followed with tomotherapy (targeted brain radiation) and whole brain radiation.  His scans a couple of months ago before starting ipi were ok,  a small tumor in his abdomen and several subcutaneous tumors.  His eyesight has been deteriorating for the last two months and the past week he has been getting headaches with eye pain. Because of the holidays we saw an on-call eye specialist on Monday and they said the eye looks ok but they figure it was a weakened muscle behind the eye and was probably due to the brain  radiation.  We have to see his opthamologist next week when he gets back from holidays.  I called our oncolgist yesterday and they said it is probably a side effect from the ipi and if the headaches get severe in nature and tylenol doesnt' help then to call back.  Our oncologist said to discontinue the steriod eye drops.  My husband cannot read, write or drive,  his eyesight seems to be deteriorating fast and I am worried.  We have to wait until next week to see someone but just wondered if anyone else has had this happen.  I know some people responded to my inquiry last week regarding this.  I am confused though because the eye doctor said they couldn't see any eye pressure yet they blamed it on the eye muscle.  FYI, the ipi seems to be working, all his subcutaneous tumors on his body have shrunk to nothing which is awesome!!  If there is any one else able to respond with anything else, I would appreciate it.

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Whitdonmike's picture
Replies 3
Last reply 1/6/2012 - 7:17pm
Replies by: scots, King, Lauri England

Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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CLPrice31's picture
Replies 3
Last reply 1/6/2012 - 6:02pm

I have been participating in the ipi/placebo trial at Memorial Sloan Kettering since May. Although I have no idea if I am receiving the drug or not, I have had quite a few of the symptoms.Currently, I am battling joint pain in my hands. My body has felt super sluggish since my second dose of the trial drug and I usually feel like I have a constant hangover; however, this is new. I am only 24 so it seems a bit young for arthritis.... I was wondering if anyone else has had a similiar problem? I have quite a bit of nerve damage in my shoulders/arms due to the surgeries, but only after my 5th dose (the first of the once-every-3-month-sessions) have I been having pains in my fingers. There is swelling and pain in two of my fingers on opposite hands. When I first started the trial, I had pain in my left foot. That has, thankfully, gone away. I guess I have something new to talk to The Wizard--as I kindly call my oncologist--on the 20th. I have had really bad headaches throughout this trial and thanks to my upcoming scans, I am starting to freak myself out......

Thank you in advance for any advice you can share.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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jmmm's picture
Replies 5
Last reply 1/17/2012 - 1:05pm
Replies by: MariaH, LynnLuc, glewis923, Anonymous

We are attempting a trip to DisneyWorld in a couple of weeks. My husband had a craniotomy at the end of November and gamma knife 2 weeks ago. The neurosurgeon isn't thrilled with our plans, but we don't know how much longer he has and want to have this memory without children. So, we're looking for the "best" hospital in Orlando, just in case. A good neurosurgery department is important. I don't think they'll be any cancer issues, but a good cancer center would be good, too. Any thoughts or ideas?

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Lisa13's picture
Replies 2
Last reply 1/5/2012 - 10:52pm
Replies by: Lisa13, Roxy1453

As dicussed before, I was having some issues which at first scared me, but then my oncologist perscribed me the entocort and immodium, Today I just started the Entocort because I was feeling nauseus.  I know the internet says that nausea is normal with crohns disease and just wanted to know if anyone has experienced the nausea with this problem?   It's very mild nausea and comes and goes. Because of this, I don't have much of an appetite which is completely understandable. 

I just want to know if this is what others have experienced. When I asked my Dr. why he's just giving me a perscription and not concerned about the cancer, he said that the symptoms I was having was colitis.   Since way before cancer, I've had acid reflux and hiatal hernia which have become worse since all my treatment, so it's hard to know what the heck is happening.  Having cancer, anything bothers you even though it could be completely normal.

Isn't it strange how I had no symptoms while on ipi (except for rash and itching) and now, 3 months after finshing, I've got the rash, itchy head, intestinal problems and nausea!  My immune system is definately kicking in again!

Many impossible things have been accomplished for those who refuse to quit

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Gene_S's picture
Replies 2
Last reply 1/7/2012 - 11:02am
Replies by: vickykay

I have not tried this but it is something I came accross and just thought it might help someone with this problem.  I figure if you have a problem with lymphatic flow it wouldn't hurt to try it. 

No drug exists that has the ability to improve lymphatic flow; however, the job can easily be handled through the topical application of Castor oil," said Dr David G. Williams.

Learn more: http://www.naturalnews.com/034558_castor_oil_health_benefits_blood_flow.html#ixzz1ian4uAOo

 
 
Judy (loving wife and caregiver of Gene Stage IV

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Minnesota's picture
Replies 27
Last reply 7/29/2012 - 10:00pm

I am newly diagnosed from an excision biopsy, and the only information I have is from a phone call yesterday. I meet with a surgeon next week who is going to do the sentinel lymph node biopsy.

All I know is that I have SSM, it was 1.45 mm?, and had a mitotic rate of 5. 

I got the impression from the doctor's phone call that 5 was a bad number.

I am very scared, if someone could give me even a sentence of positive news, I would really appreciate it. Thanks.

Persistence (sometimes) Prevails When All Else Fails

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Richard_K's picture
Replies 6
Last reply 1/10/2012 - 2:39pm

I had scans taken yesterday and got the results today.  Scans were good and I will be cintinuing in the phase II of a clinical trial for Zelboraf.  Starting my 23rd month in the trial.

Dick

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mygirlmaddy's picture
Replies 16
Last reply 1/10/2012 - 5:17am

After a non-stop battle of almost two years, my husband died the day after Christmas.  Despite repeatedly having unsuccessful treatments, he never gave up.  He had a treatment just one week before succumbing to an infection and was practical joking just days before.   If he were here to talk to all of you, he'd tell you he didn't regret trying every possible option and maintaining hope for himself and our daughter and me. 

Thank you for all of the support I have found on this site.  The human spirit continues to amaze me.  My wish for all of you is peace with whatever your path is and the courage to take it.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Phil S's picture
Replies 4
Last reply 1/9/2012 - 8:56pm

Quick background, Phil was diagnosed with mucosal melanoma two years ago, became Stage IV with lung mets in July, and then a brain tumor the end of September. Phil had craniotomy and WBR and I got us to MD Anderson in November, he has completed two rounds of biochemo here in Texas. Yesterday, we learned the wonderful news that his scans show stable brain MRI, and his CAT scan shows significant shrinkage on all his body mets, the doctor was thrilled, we are too! When we got to Houston in November, Phil's cancer was spreading fast and the doctor said to us, we need to change its direction, so we feel that direction has definitely changed for now! Phil just started his 3rd round of biochemo, and feels motivated to get thru this tough treatment now that we know it's working. He only really complains about fatigue, but I tell him that's totally normal between brain surgery, radiation, and biochemo. He still is able to work a little over one week in each 21 day cycle. So, we fight another day, and keep in mind all the warriors we have lost and all those currently in the battle right along side of us! God Bless and Happy New Year! Valerie (Phil's wife)

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