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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ipi in DC's picture
Replies 8
Last reply 4/12/2011 - 10:47pm

Hey guys,

Havent posted in a while but have kept up on things here. Today I met with the doctor at MD to go over scans from yesterday and today, very mixed results. Lungs stable (largest nodule 7mm out of a half dozen) brain and all other organs clear. One node (exterior iliac) has grown from 1.2 to 2.1 since last scans 8 weeks ago. Dr has looked at all the scans since last august and feels it is melanoma growth, so off the trial. He believes it is some resistant cells that the ipi could not take care of. As far as lungs they can not be sure if the cells are dead or alive that are showing in the scans but assume they may still be alive and have some resistant.

We talked about a new drug they are trying in a stage 1 phase, but he is suggesting bio chemo IL-2,interferon,Vinblastin,Cistplastin, no dicarbazine due to I am on Temador now but will stop taking it for now anyways. The new drug has no history so he wants to use bio since my issues are lung and lymph.

I know how nasty bio is but I want to hit it hard since its is basically localized for now.  

Please fell free to put in your input good or bad, any help for the thought process helps, for sure anyone who has done this bio chemo and how you responded, how long you were taking it, where, and how are you know as far as side effects and any tips.

By the way I was going to take cycle 11 today, so I have been on the trial about 8 months (can't complain no major growth and just a major rash and itching to deal with for side effects) I truly feel blessed to basically just be looking at a node (obviosly it way bigger than that)

For those thinking of Ipi, i would do it all over again.

 

Thanks,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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kim2712's picture
Replies 7
Last reply 4/13/2011 - 9:56am

My was dx in 2004 with stage 3c melanoma. It was on his ear, ulcerated, hi mitosis rate, and one positive node. Had complete neck dissection, then 1 year of interferon. All has been fine until March 7th. His right lung collapsed 100%. Inserted a flexible chest tube to drain fluid and try to get lung inflated again. After a week of that and no success they decided to have a thoracic surgeon go in and take a look and talc the lung. When he got in there he found hundreds of tumors in the lung, pleural, cavity and chest wall. This was on March 14th. While in there he inserted the large drain tube and took out the flex one..After a week they let him go home with oxygen. He was home for about 2 weeks, started coughing up blood, trouble breathing so we rushed him into ER. After X-rays and a CT we found out that within 10 days the cancer had grown in the lung, and spread into the liver, diaphragm, ribs, and the space between the ribs and liver. 5 days after that another scan showed increases in liver tumor and 2 other ones. They started 3 days of interferon and today was supposed to start the chemo part of that protocol. Three diff drugs. He has had significant increase in fluid drainage from lung and now abdomen is swelling quite a bit as well as legs and feet. They did another CT that we haven't heard about yet but they are hurrying to get chemo started tonight, that tells me something is wrong. I am so scared, his cancer is spreading so damn fast.

We are at the Cleveland Clinic, good hospital.

Anyone have similar stories that ended successfully?

Mom to Erik

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I am looking at my Immune modulator therapy to begin in the next few weeks.  Although the long term data is not as well established with Leukine therapy as it is with Interferon therapy, I am tempted to pursue the Leukine therapy due to the less serious side effects as compared to Interferon.  Has anyone had experience with the Leukine therapy, which consists of 14 days on 14 days off each month for one year?  The dose is a shot per day, self administered.

 

Thanks Wayne

"Hope is the only antidote for fear" Lance Armstrong

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Nebr78's picture
Replies 1
Last reply 4/10/2011 - 5:28pm
Replies by: Janner

I can't get answers from Drs. (5-6)  I had radiation for Melanoma lumps(nearly golf ball size on face and chest)  about 2 months ago.  There was about 18 treatments and Dr. said they were strong.     Now  (April 11) I am so darn weak it is pitifull.  It is really bad early in the morning.. I get so I just can't move anymore.  Have been in house for a weak.  I am short of breath but that could be my heart disease and terrible dry mouth, and that can be from all the medication I take..  MY QUESTION IS:   HAS ANYONE ELSE HAD THIS WEAKNESS BIT AFTER RADIATION?   TWO MONTHS AFTER??  Area affected is mainly from waist down.

 Don't say get another  opinion as I have had about 6.  With my heart disease of 40+ yrs, and being 79 yrs. old I am not going to last too much longer.

I just want to be a little more comfortable with the time I have left.   This weakness bit sort of come on all of a sudden.    By bedtime it is alittle better but I would not want to try to walk 1/2 block.   I am supposed to have two masses in lung 4cm and 2cm and growing.    One more complaint and I will quit.

Occasionly I will cough up yukky phelm like I had a cold and infection in lung but I don't.  Hope there is a expert Dr. online.   (would like to play a few more rounds of golf but can't pick up bag now)

Thanks

 

 

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/10/2011 - 9:55pm
Replies by: lhaley, dian in spokane, MichaelFL, Janner, Anonymous, Lisa13

Does anyone know what the nodes in your neck would feel like if they were infected with melanoma?  I had my groin nodes removed a year ago and 3 weeks ago I noticed the lymph nodes on the left side of my adams apple are swollen.  It has gotten slightly more swollen and i have now noticed a lump right next to the lymph nodes.  Does anyone know what it would feel like if the nodes did have melanoma present?  I was just wondering if it would just feel like swollen nodes you might get from a sore throat or if there were any particular characteristics of melanoma in the neck nodes.  One doctor told me that if there were malignat melanoma present there would be a very hard lump and it would not hurt.  I'm probably just being paranoid.  thanks in advance.

 

all the love,

 

Peter

"without the bitter the sweet ain't so sweet"

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Charlie S's picture
Replies 5
Last reply 4/11/2011 - 9:00pm

The Chat Room, used to be a vibrant aspect of MPIP that afforded great comfort on an immediate basis for many melanoma patients,their caregivers, family and friends over the years (including myself).  For whatever reason, this no longer seems to be the case. Usually when I go to chat the dangling posts are from people who had signed in and had nobody to chat with, so they waited and left.

In an effort to offer a constructive approach to return this now gone vibrancy, as opposed to just complaining, might I suggest that there be a trial run of Hosted Chat Sessions.............not moderated mind you, but hosted......and that it be done by volunteer hosts who are either patients or caregivers.

For instance, patient wise, there is a lot of medical appointment/procedure/report information streaming into their lives and often that occurs on a Tuesday, Wednesday or Thursday that not only wraps up their week of medical interaction, but leads to laying the groundwork for the upcoming approaches and strategies in the coming week.

Long and short, for starters, how about getting some volunteers among the board to be online in the chat room, say, Tuesday, Wednesday and Thursday from say 7-9 p.m. across the time zones of the US, Canada, Australia and the UK?  Other than some e-mails, for scheduling purposes, this would cost the MRF zero monies and I feel certain their is an ample body of willing volunteers and really, it would not take that many people to pull it off.

An open call on the BB from the MRF should proffer a quick group of volunteers I suspect.

These hosted chat times would need to be prominently displayed so people would know they exist.

Since this is no cost , with the only risk of there being MORE people in Chat, seems worth a shot to me.  It certainly would not reduce the chat room traffic.

Cheers,

Charlie S

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Anonymous's picture
Replies 3
Last reply 4/9/2011 - 11:34am
Replies by: ErinMcH, Janner, lhaley

HI- me again (the one who is asking about UNchanging moles and innocent new ones etc.

I am obviously on high alert now... fun!
I just noticed a BRAND new mole on my leg. It looks normal (brown, about 1mm, round) in and of itself, but it is definitely brand spanking new.

I have hundreds of moles and family and personal history of mm in-situ. I will plan to get it removed, but is this the norm?
For moley people, do you get new moles and only "panic" or remove if they continue growing or look otherwise atypical?

So far, 3 newish ones I have removed have all been moderately atypical (two on butt and one on toe)

I am 40 btw....

Thanks-- I am in a panic over this little thing (among others) and need some advice as i don't see derm for a month.

Don't want to rush in for a normal looking spot because I have tons more to show/ possibly remove and I don't want to get crazy.. thanks

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NicOz's picture
Replies 13
Last reply 4/11/2011 - 9:38am

Finally after 3 years of trying to find one it looks like I'll be starting on the 18th. Only have my iPhone access at moment so will be short & sweet (thankfully, I hear you say!) have been running around for a while, not well and organising bits and pieces so haven't been around much. Just wanted to give a heads up to those who may be interested :)

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Anonymous's picture
Replies 5
Last reply 4/11/2011 - 9:16pm

Hi everyone,

I posted recently about a very light innocent freckle on my toe that came back moderately atypical.

It was a few years "new".. but so innocent. In the meantime, my sister just had a spot removed from her face. It was UNchanged for at least 10+ years, on her face for 20. Her new derm looked at it with a dermatoscope and it had an unusual pattern so she recommended removal. It was severely atypical -- more or less mm in-situ.

Both of us have hundreds of moles, had had mm in in-situ, have body photography done, and I've probably had 50+ moles removed.

I am now on edge because hers didn't change at all- so how can we know what needs to come off and what is brewing on our skin? I have so many now i want off w/ our history, my moley skin, with my toe "surprise" one and now her face.

My derm i love, but does not use a dermatoscope that I know of (or not very often)

I know how lucky we are to catch it early, but just wondering how to proceed if now change or being new might not even be a sign!!

Thanks and best wishes to all : )

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beckyt's picture
Replies 3
Last reply 4/8/2011 - 10:17am

Hello! I have been invited back again to our local 5th grade Health Fair to present on skin cancer/melanoma.  I am looking for a video that would be of interest to a 5th grade level.  Only need a 10 minute one or so.

Anyone out there have a suggestion?

Thanks!

Beckyt, wife of melanoma angel Brad (5-12-07)

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gabsound's picture
Replies 5
Last reply 4/14/2011 - 9:30am

Hi. Unfortunately (?fortunately) the clinical trial Dr. Samlowski ( I love that guy by the way) mentioned putting Interferon head to head with IPI is not opening in time for me. With my lesion being ulcerated he doesn't think I should wait another month or more. I asked tons of questions and will start my Interferon treatments on Monday. I have to say, I had a sense of peace and a feeling of optimism after making that decision. I initially thought I would watch and wait, but had a nagging feeling. Insurance company delayed approval as long as they could. I will get me picc line put in tomorrow. I'm anticipating feeling pretty bad and have lightened my schedule to try working 1/2 days. Stocking up on Alleve, tylenol, ibuprofin.

I also saw a therapist at a lymph clinic today. I have some swelling in my right leg which extends to the foot. Next week I will learn about massage and get a tighter stocking for that leg. Hope that will keep it from getting worse. I am 7 weeks from my surgery WLE inside of right knee and lymph nodes removed from right groin.

Thanks to the post of "Interferon Glad you did it?' Great replies!

Best of luck to all of us!!

 

Julie in Las vegas 3b

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Diana C.'s picture
Replies 1
Last reply 4/7/2011 - 9:03pm
Replies by: MichaelFL

Dana Farber News includes a new story on ippi. I hope this link works   .http://www.dana-farber.org/abo/news/press/2011/fda-approves-new-drug-for....

 

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Jan in OC's picture
Replies 11
Last reply 4/7/2011 - 9:39pm
Replies by: Jan in OC, stillhopeful, o2bcheri, RMcLegal, MichaelFL, Anonymous

Hi everyone.  I have been here a few times as my husband's battle progresses.  But now i am asking for help (a hard thing for me).  We have been going to UCLA for the last year and a half.  He is stage IV with mets throughout his organs, largest in the liver, plus brain mets that he has SRS for. He has tried interferon, BRAF, SRS, IPI.  Some days we are accepting of his treatment, other days frustrated. UCLA does not actually take a" team" approach to his treatment and I'm not sure the doctors actually talk to each other!   Last week, the doctor told us the IPI was not working and asked what we wanted to do now, like he had no other options for us.  My husband is a little depressed.

As a side note, after a frustrating year of NO success with a loan modification, the bank is taking our house at the end of this month and we need a new place to live by Easter (need a few miracles here).  My husband lost his ability to work and is on SSI.  I also take care of my disabled 21 yr old daughter who lives with us.  SoCal is too expensive even to rent on our reduced income and we cannot afford to live here.

We have used up all of our financial assets in this cancer battle (lost my business) and filed for bankruptcy last month.  His family just doesn't seem to care or understand what we are going through (although we have explained a million times!).  A lot of our "friends" have backed away, like they think melanoma is contagious.  Most days, I feel like our family is all alone in this.

My husband said that if UCLA cannot offer us any other options, then right now we can move anywhere in the country for treatment........in under 3 weeks LOL

Where can we move to, near a great melanoma center that offers him the best chance of survival?  Yes, I reviewed the list of centers that Michael posted, but which ones are the best? We are seriously considering MD Anderson in Houston.  Don't know any of the doctors there?   Recommendations??

I do not have the time to fly anywhere to find a place to rent, so will be going in blind.  Do not know what areas to look online, big city.  Please feel free to email me at oldhippielady50@yahoo.com for any help or concrete suggestions.  

We have many friends praying for us, but I need more that that now.  I am doing everything I can to keep my family together and need HELP!!!!!!  No stress here, nope, nope.  just feel like I am running out of time, struggling,  and don't know what to do.  

Jan, wife to Dirk

laughter is the best medicine

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archer's picture
Replies 17
Last reply 4/11/2011 - 1:56pm

For those of you following our journey, this is the latest yesterday afternoon.You remember that on Tuesday we went to see our first onc.  You all let me know loud and clear that my wife and I should see a specialist.

We mentioned to the first onc and remember that was the first time ever being to an onc, for his opinion on a second opinion.  He said if he were in our shoes he would understand doing this.  He even said that there is only one in the whole midwest and he was located at Mayo Clinic.  He went on to say he wasn't sure how "hands on" this specialist was....  So, after he left they came in, took her blood and then on the way out talked to her about insurance and having to get two pre-approvals and that she thought the machine was booked all of next week.  Ok with that.. Remember, we do have an appt on Tuesday, at a Cancer Center and with a specialist.  Name and center taken from this website.  OK  U of Iowa is the center

Now, yesterday afternoon, the first onc's PA calls my wife at her work and asks her if they were still to proceed on her case because the specialist we are going to requested her records.  She reminded her of the conversation with the onc where he stated no problem with him and a second opinion.  The PA then went on to ask my wife, "should we still proceed to schedule the PET"  My wife, confused by this call, having to take this call at work said, "yes" with the understanding that we will cancel if we are happy with the specialist.  Here is the kicker and the main question.  A small history.  They are trying to find the main melanoma and 18 months ago she had "basil cell" removed about 2 - 3 inches away from the underarm where she found the lump (spindle cell).  There seems to be a strong suspicion that the basil cell might  have been misdiagnosed and that would then be the primary.

 So, the last statement from the PA was, what is the other onc name:  my wife wasn't sure and she told the PA that.  Then the PA said, well the other doctor has also requested the stain from the dermatologist that removed the basil cell and we are NOT sure we are going to send this to them. We feel that our local pathologist should review that stain since the lump was first sent to her.  (this is the same lab that called when they first got the biopsy and told us that they were going to sen it to Mayo or the place we are going Tuesday)

Does this seem like normal treatment for my wife to grill her with this and then to mention they are NOT going to send her stain to the specialist we are see Tuesday?  I thought this belonged to my wife and she could have it sent anywhere she chooses. So many questions, so many thoughts.  Thank you.

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I had my melanoma removed and a sentinel node biopsy done in December of 2010.  One of three of the sentinel nodes was positive for cancer. This led to a superficial groin dissection , where all of the Lymph nodes were clear of cancer. 

I saw my Oncologist today and was offered three possible therapies for my Melanoma;

1. Standard INF - 4 weeks of IV therapy by 48 weeks of 3 shots per week.  Therapy is FDA approved.

2. Pegylated INF - One shot per week for 2 years.  This treatment was recently approved by the FDA.

3. Leukine(GM-CSF), not to be confused with IL2, 14 daily shots followed by 14 days without.  This schedule to be repeated for one year.  Long term study data for this therapy is not yet available.  However, Leukine has been shown to be helpful in cases where there has been a cancer recurrence in the patient.

I have a couple weeks to make up my mind and set things in action and would appreciate any input anyone has for the PEG-INF and the Leukine(GM-CSF) therapy versus the standard INF.

"Hope is the only antidote for fear" Lance Armstrong

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