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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itsmitzi's picture
Replies 9
Last reply 5/18/2011 - 11:07pm

I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.


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shellebrownies's picture
Replies 13
Last reply 5/18/2011 - 8:33pm

And the hits just keep on comin'....

After letting the doctor know that  Don has started having lower back pain, they did a new MRI of the area. Not only has the cancer spread in the bones of his spine, it has now affected the sheath surrounding the spinal cord in at least one place. This news is added to my getting the copy of Don's CT scan from the 6th that said he has "innumerable" small lesions in his liver. (These results were never told to us, thank you very much, I had to retrieve from the Patient Gateway website...)

Explain to me again why the the heck he hasn't received treatment yet?

Well *now* they want to treat him...with steroids and radiation to shrink growth in this area (which will then make him inelegible for his trials). We have decided to hold off a couple days while we get our second opinion from Dr. Lawrence on Thursday.

Anyway, thanks for letting me vent. I could use some encouraging words tonight...this dang disease is spreading so fast!


Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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eaca's picture
Replies 11
Last reply 5/18/2011 - 4:36pm

My dermatologist removed a mole from the center of my back last week because it had grown and started to bleed.  She called me two days later with the news that the pathology report has shown melanoma.  She has referred me to the Melanoma Center here in Houston and I have my first consultation scheduled for Friday (5/20/11).  What questions should I be sure to ask the doctor at this appointment?  Thanks for any advice and help from those more experienced!

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Hi All,

 My husband just had his 6 week scan after starting on PLX4032, the Roche Braf inhibitor. He had to be taken off for a 4 days during the last 2 weeks due to side effects, but had been back on the drugs at a reduced dose for the last week before the scans.

Apparently they show a slight progression, the doctor said he's calling it "stable" for now, and wants to check again in 3 weeks.

Jay had been on a MEK inhibitor previously and the docs were worried there might be some drug resistance to the Braf inhibitor becasue of that.

Did anyone else have a similar "stable" scan after taking the drug for 6 weeks and if so, what happened next?

We were so hoping we'd get at least 6 months out of this drug before moving on to the next.




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Anonymous's picture
Replies 8
Last reply 5/18/2011 - 8:30am
Replies by: Carol Taylor, boot2aboot, Anonymous, Lisa13, Charlie S, nicoli, akls

I am very unhappy with the way my family looks at skin cancer, Melanoma.  I was diagnosed with stage IIIC Melanoma June 2010.  I have never been one to go indoor tanning, but my sister, mom, and neice who is 15 have gone and my neice is still going.  My neice feels the need to be tan like all her friends no matter what the risk is.  I have shared information with my family but it seems like no one is taking this seriously.  My sister who would lay in the sun for hours for years has never had any problems.  My mom who tanned indoors for years never had any problems, but me who was never really into tanning got Melanoma.  My neice also does the relay for cancer walk every year.  I don't know if she just feels like this could never happen to her, or she just does not want to think about it.  Not sure.  How do you make people understand how deadly this is? My mom has a spot on her back that is as big as my thumb nail and has several different colors in it and she does not feel like it is an emergency to go to a dermatoligist to have it checked out.  Am I just over reacting?  They have all seen what I have gone through for the last almost year.  I am into my 7th month of Interferon shots.

Don't sweat the small stuff. There are bigger fish to fry!

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Napa K's picture
Replies 6
Last reply 5/18/2011 - 3:37am

I visit often, and rarely post but would very much appreciate insight and feedback.  I am (as of later this morning) an 8 year survivor of stage IV melanoma.  Early on I was treated with bio chemo + 2 years of IL2 pulse maintenance and managed to remain disease free until 2009.  Since then I have been waging war against a relapse that has once again reared it's ugly head.  I have had surgeries and did 10 months of PLX and the question is "now what".  My relapse is very localized at this point with one deep lesion, high in my axilla, nearly at my neck level and thus far, my disease has behaved in a fairly slow growing pattern.  The lesion is judged to be resectable but tricky and I recently had surgery in that area. Of course the other obvious option is Ipi. The only hiccup with this is that I have had a tremendously difficult time with every systemic treatment thus far (chemo, IL2, PLX).  If there is a side effect, it seems to manage to find me and in great proportions and the thought of going down this road again scares the ----out of me.  That said, if any of you out there have experiences that were rough with bio chemo/IL2 but have been easier with Ipi, I could REALLY stand to hear from you right now!  I am a mom of two (9/10) that has missed the last two summers and we are all in desperate need of a few months with strong mom back in action and able to participate in a long planned and much needed family  trip.  In my best guess, this will not be the case if Ipi is our choice.  Please share any good Ipi experiences you may have and any other insight. Thanks much and be well!

Hope is the most powerful drug

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dafad777's picture
Replies 3
Last reply 5/18/2011 - 1:16am
Replies by: betsy, Anonymous, washoegal

hi.had a question is malignant blue nevus the same as daughter had tumor removed six months ago.the other day she had thyroid ultrasound done and they decided to check her lymph nodes.the only information i got was small lymph nodes noted on report.I am guessing thats good because if they were inlarged i should be concerned?they so far have treated it the same as far as surgery and wle.thank you any information would be apprecated

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Carol Taylor's picture
Replies 4
Last reply 5/17/2011 - 10:42pm

Janner and Michael, I may have missed it and if I did I'm sorry, but I haven't noticed posts from either of you lately and I'm hoping you're each well and doing OK. You're each missed greatly! Like I said, there are so many pages of threads I may have missed something, but you haven't shown up in my email notifications, so just checking on you.

Grace and peace,


Life's short. Eat dessert first. (This blog post contains links to my story).

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Lisa13's picture
Replies 7
Last reply 5/17/2011 - 8:07pm

I'm close to 3 months out from my WLE and lymph node dissection (groin). I've had a very small amount of lymphedema in  my leg but nothing major.  As a woman, I've also had some swelling in my vaginal area (sorry boys) :).  I've noticed a long, hard bump in between my scar (groin) and pelvic region.  I know it can be a number of things, but I wanted to know if anyone could suggest what it could be based on their own experiences.  There is no pain, it just feels hard amd long, not like a cyst and it's not on my scar. I'm not sure if I should make an appointment for my surginal oncologist to check it out.  I'm thinking because there is fluid there, it's created something abnormal.




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To the board:

Its been a few months since I posted, but wanted to ask a question to those that have had intestinal surgery. In February, I had a golf ball sized tumor removed from my small intestine via a partial bowel resection. Recovery was pretty quick (3 days in hospital) and all was fine until 4 weeks ago, when I was unable to get to sleep on a sunday night due to extreme abdominal pain. Wound up spending 3 days, 2 nights in hospital as it ultimately corrected itself without any treatment. CT revealed it was a partial obstruction.

Then, last week, same thing happened. Admitted to Sloan Kettering on Tuesday. CT revealed partial bowel obstruction plus, unfortunately, a small tumor on the liver. Obviously the news about the liver was most heartbreaking, but the pain from obstruction was most important to fix immediately.

My question, has anyone else had to deal with multiple small bowel obstructions? How did they resolve and did u need surgery again to fix? If so, have u had any problems since your corrective surgery?

I had an NG tube for 2 days last week, was uncomfortable, but it worked wonders. I was released on Saturday night, felt great yesterday and this morning, and then about 4 hours ago, have started to have similar pain/cramps. Really would not like to go back to hospital, especially as my doc basically said if I come back, I'm going in for surgery. Does anyone have advice on how these can be avoided? Diet perhaps?

Also, as far as liver goes, mine appears to be resectable, its small at 0.6cm near the base of the liver. The radiologist missed it the first time in fact. The docs at sloan recommended IPI (Yervoy) as I haven't done anything since I was stage 3 and did interferon. Any thoughts on getting it resected? Docs advised against it for now. They did mention possibly post treatment, I get it ablated. 

Any and all advice welcome.

Kind regards

Wetterhorn, Stage IV, Liver Met

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Shelby - MRF's picture
Replies 4
Last reply 5/17/2011 - 3:40pm
Replies by: Ali, washoegal, Charlie S, King

We are happy to report that in the next couple of hours, the bulletin board changes that you recommended to us will go into effect.  They should be fully implemented by approximately 4pm EDT today.  This change will make the bulletin board topic posts sorted by the topic post date, rather than by the last comment date.  This will be the default.  You can also choose ascending or descending.  You will have the ability to sort it "the old way" (by comment post date), should you want to.  It will remember your preferences only if you have a registered profile. 

Thank you very much for your patience and please don't hesitate to contact me if you have any questions.  Have a wonderful day!

Shelby - MRF  

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Nebr78's picture
Replies 2
Last reply 5/17/2011 - 2:08pm

I have one thing then another with this M-stage iv.  Lumps, tingling, weakness all over.   Now this:   There was always supposed to be a small mass on my lower spine but caused no problem.    For about 2 weeks now, sever pain in lower left on my back.    Pain pills having hard time challenging it.

Took a ct scan and waiting for Dr. to give results.   He said possibly if mass grew  it could cause the  pain..  Some of the other stuff has left.   He said if mass has grown he will recommend radiation.  Just got done with a bunch of that on face, chest.

If anyone has had a similiar thing I would appreciated you telling me.   Remember I am 79yrs. old and have heart disease for 40+ years.

I think I am going to have a raffle so my wife  can have some money.    Sell ticket to see which one: (heart or Cancer)  gets me first.  !!!!!!!!!!!

I seem  to learn more about me on this forum than when I go  to Dr.   Which is 3-4 now.     Thanks

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carol b's picture
Replies 7
Last reply 5/17/2011 - 10:16am

Well,, 4 of my tumors have disappeared, no sign of them at all. YEAH!!!!  The Huge one under my arm has grown 3 more cm. It was no surprise as you can literally sit and watch it grow.. I have a small 3mm mass on my tenth rib and a small 5mm mass on my right lower lobe of my lung. Neither has been tested to be cancer.. I refuse to believe it is as there could be so many more benign things that they could be. I have a spot on my hip bone with FDG uptake. I'm gonna say that where they took out a piece of bone for a spinal fusion in 2000.. I'm refusing to believe my cancer has spread. I will get my IL2 on Wed. and it will knock out any little thing i have, I believe this From my very soul. God is holding me and he wont let go. My prayers are all with you on your journey, what a horrible disease this is. It affects every one that loves us. Its as if they have it to. They have the same feelings we do but do not ponder on it like those of us with the disease. Myself i have rather have the disease than to have to watch someone i love die slowly.. Anyways. i will say prayers for caregivers as much as for you that has the disease. I want to thank all on this board for helping me get thru this. Its amazing how a few little words from someone you have never met can make you strong..

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Carol Taylor's picture
Replies 14
Last reply 5/17/2011 - 3:02am

Everyone, this is an SOS for Eric. Jill just posted on the facebook page she has about what's going on with him. It's not good. I'm not going into detail, but please trust me on this. They both need your support and prayers like never before.  Bombard the throne of heaven.

Lord, in Your mercy, be merciful now! Amen.

Life's short. Eat dessert first. (This blog post contains links to my story).

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CLPrice31's picture
Replies 14
Last reply 5/16/2011 - 9:09pm

Hi all. I went for my latest CT/MRI scans...everything is clear except the new development of a thyroid nodule. My oncologist said he was concerned, that we need to do an ultrasound, but that most thyroid nodules are benign. Should I worry? (Of course I am going to regardless...but....) Has anyone else had an issue? I am still set to begin the ipi trial at Memorial Sloan Kettering on the 20th, so he must not be *that* concerned...right? frown


"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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