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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Liz C's picture
Replies 3
Last reply 8/1/2012 - 12:22pm
Replies by: Liz C, aldakota22, Anonymous

Nine years after my last melanoma surgery, I was just diagnosed with a new primary.  Stay vigilant, folks!

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awillett1991's picture
Replies 1
Last reply 7/26/2012 - 7:15pm
Replies by: gabsound

Stumbled across this and found it useful in explaining where we are in determining which to go with in what order. Pretty easy to read. So many unknowns still but having options is a good thing!

http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20B...

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tim duduit's picture
Replies 3
Last reply 1/31/2013 - 3:52pm
Replies by: Anonymous, aldakota22, Tim--MRF

After 8 weeks on the CDK 4/6 Dual Inhibitor Trial medication (a protein uptake inhibitor), my tumor has not grown!  It's still the size of a quarter and I'm continuing on the medication since I'm deriving a benifit from it.  Thanks to the great folks at the START Center for Cancer Care here in San Antonio for this great opportunity.

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sjl's picture
Replies 9
Last reply 7/30/2012 - 12:09am
Replies by: sjl, LynnLuc, Anonymous, King, aldakota22

My husband was diagnosed with malignant melanoma of the nasal cavity in April following what was thought to be a routine procedure for an inverted pappiloma.  On May 8, more surgery was performed on the nose to get clear margins and many lymph nodes were removed, one of which was malignant.  They are calling it Stage3:  T3c, N1, M0.    He is to start radiation and then interferon but there have been many delays.  A node on one lung was questionable and after being bounced around from place to place and undergoing one test after another (CT's, MRI's, PetScan, Lung Biopsy and so on) it has been determined that he also has a primary lung cancer, non small cell squamous.  Once that is removed, they will begin radiation for the melanoma on the nose and neck.  The surgery isn't scheduled until August 23.  The radiologist says he will see my husband 2 weeks post surgery to begin treatment. All agree that the lung needs to be taken care of first.  I am scared out of my mind over the delay but the doctors will not do radiation until the lung nodule comes out (expected to have only part of the lobe removed with no further treatment necessary for the lung).  It's not as though nobody has been seeing my husband in all this time.  We have been seeing someone or having tests done every week somewhere since this began, with the exception of one or two nonconsecutive weeks.  All test results, scans and reports have been forwarded to his melanoma specialist at the Hillman Cancer Center and he is aware of everything.  What do you think of all this?  My husband was scheduled to have the lung surgery on August 13 but of all things, he called today and had it changed to August 23 so he could spend more time with our son before he leaves for college and attend his nieces wedding before the surgery.  Do you think that the ten day delay will matter after all of this time?  I'm at my wits end with all of this, and now with him for postponing the surgery after we were finally able to get a date.  he has been given a 50/50 chance on the outcome for the melanoma.

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LynnLuc's picture
Replies 2
Last reply 8/6/2012 - 6:55pm
Replies by: Webbie73

http://www.bethesdaskincare.com/

The Melanie Policy - free bar of Bethesda Sunscreen Soap to Cancer Patients - from Bethesda Skincare

They also have a FB page

https://www.facebook.com/BethesdaSkincare

I wrote the guy and requested it ( a friend sent me her response letter) and he responded to mine as well and asked me to spread the word. Another girl on FB got hers and she says she loves it.

The fella said because I am fair skinned I should remember to still wear sunscreen...so he seems like a wise fella!!

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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kay5291's picture
Replies 8
Last reply 8/8/2012 - 11:30pm
Replies by: Roxy1453, kay5291, AngelaM, LynnLuc, mcanova, aldakota22, Anonymous

Hello All-

I have been lurking for a week and I have gone back and forth about posting because I don't have any test results yet.  But you all seem so kind and calming, and I guess I could use some of that right now.

So a year ago I had a baby.  Late in my pregnancy I noticed a small spot on my upper leg/buttock area.  It looked like a small hemangioma, which run in my family, and my skin always changes when I am pregnant from the hormones.  Most of the changes go away or resolve after I stop breastfeeding, bu this one didn't.  It grew to the size of a small pencil eraser, and got dark.  I figured it was a blood blister.  I really didn't think anything of it.  But it never went away.  A couple of weeks ago I brought it up to my husband and he agreed that it would probably be best to get it looked at.  I made the appt with my pcp.  I have a very good relationship with my doctor, but as soon as she got a look at this thing her whole demeanor changed.  And I guess that's when I got scared.  She set up an appt for me with a surgeon, saying that she wanted to make sure that an expert cut it off because of margins, etc.  I had a consult with the surgeon first, and he said, "I don't like it.  That needs to come off ASAP."  I told him we were going on vacation next week and he said he didn't even want to wait until after that.  He set up the excision for the following weekday.  While he was cutting it off, he said two things that have me very uneasy.  First he said to his nurse, I've going to revise this some before I stitch up."  To me he said, well I've got to take off a bit more than I told you.  Then several minutes later he said, "Ok I'm going to stop.  I can't chase this anymore."  When I asked what that meant I was not answered, and the subject was changed.  I was given short or no answers at all for every question I asked, in fact.

Today is Wednesday, and the nurse said she would probably have results Friday or  Monday.  It's like torture.  I don't want the call but I want the call now.  It's difficult because no one will talk to me about it.  My husband says don't borrow trouble, which I understand but just makes me feel lonely.  Doctors wont answer any questions until they have to.  My mother dissolves into tears at the mere mention of the subject.  Ugh.

So I guess I just wanted to know if anyone has any idea what the surgeon could have meant with those two statements.  Cause I knwo what it SOUNDS like to me. Also I guess I needed an outlet to get some feelings out.  I think it kind of sucks that the one going through it is forced to be the "strong" one for everyone else and hold it all together, but that seems to be my situation.

If you're still reading, thank you.  As fatalistic as this probably sounds, I am hoping and praying for good news.

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Janner's picture
Replies 16
Last reply 7/27/2012 - 11:21am
Replies by: Anonymous, Janner, Linny, triciad, akls, washoegal, AllyNTAus, davekarrie

Just curious for those of you who've had an axillary LND, what was your pain like following the procedure?  Narcotics?  How long?  Recovery time?  Inconvenience level?

I have an 87 y.o. father who has melanoma in the right axillary lymph nodes.  He had one node cherry picked maybe 8 months ago, but now others are growing.  It's his cane arm and I'm worried about pain, lymphedema, and compromised quality of life.  He has experienced severe personality changes while on narcotics (although he doesn't believe his family when we say that).  He has limited mobility and limited tolerance for being inconvenienced.  I'm not sure how well he'd do with stripping drains.  We have an appointment tomorrow with a surgical oncologist that originally suggested the LND which we refused as only one node was enlarged at that time.  I'm trying to balance quality of life with keeping things in check.  My father has 3 other types of cancer but all are stable except for this melanoma.  I understand where this can all go, but leaving this alone is most likely the option my father will choose.  I'm just trying to consider all options from nothing to minimally invasive to a complete LND.  My Dad will look to me for guidance on this one and I want to feel more comfortable than I do right now with my choice.  Any input would be appreciated.

Janner

http://www.MelanomaResources.info

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Nell's picture
Replies 4
Last reply 7/27/2012 - 4:45pm

I have just had surgery for my 3rd local reoccurance....in rt. axilla.  Oncologist says radiation is not very effective....radiation oncologist says if it is truly localized, PERHAPS it can deter spread....Truly don't know what to do.  Just had negative brain MRI and 2 Cat scans--abdomen and chest---last PET was January.  Radiation oncologist says a new PET is needed..and if it is clear, radiation is indicated. My oncologist didn't order another PET....I am 65...I understand Sloan Kettering doesn't even offer interferon anymore, and nothing else is available for stage III....Anyone have experience with radiation for Stage III...Would PET scan offer more info that my recent tests didn't?   Thank you.

One voice can make a song; one life can change the world.

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Gene_S's picture
Replies 6
Last reply 7/30/2012 - 11:51pm
Replies by: awillett1991, ToddC, Gene_S, Anonymous
I am convinced that my melanoma was caused by "The lack of sunshine" since I worked over 40 years sleeping during the day.
I also believe that this is the reason that melanoma rates are skyrocketing today. People that never get quality sun on their skins are the most likely to get cancer (all types).  Best wishes and get some Sun...   Gene
 
See the article "Sunlight and Melanoma" at
 

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

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KMT2003's picture
Replies 13
Last reply 7/28/2012 - 6:42pm
Replies by: fdess056, King, KMT2003, triciad, Anonymous, Nell, Gene_S

I was dx with melanoma in 2007 when a mole was removed from the back of my neck stage unknown. In 6/2012 was dx as stage 3 when a swollen lymph node was removed and a lymph node dissection was also done to remove 12 other nodes which were all negative. I am being seen at Moffitt in Tampa while finishing up 20 treatments of radiation locally. My next step is the interferon/ipilimumab clinical trial at Moffitt in August. Anyone out there going to Moffitt or used either drug to tell their experiences??? I'm really worried about the side effects since I will be going back to work as a school teacher in August when I start my trial.

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himynameiskevin's picture
Replies 10
Last reply 7/27/2012 - 12:35pm

I talked to the radiation oncologist this morning, the decision to stay on Zelboraf until we know for certain what's going on inside my body was made.

A "detailed" MRI has been ordered for next week to give a clearer picture to show how many/much of the tumors in the brain are new, active and growing and which, if any are just necrosis.

A PETCT has also been ordered for next week to show the status of my body, and give insight to whether these news ones in my head are being seeded by something in my body or were there before I started Zelboraf but too small to see. The scan will also show if Zelboraf is even still working.

Depending on the scans, SRS or WBR will take place regardless, and the decision to stay on Zelboraf or trying IL-2 again in the future if all goes well will be made.

So now I just wait for scans.

Until then, thank you all for the continuous thoughts and support. :)

-Kevin

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Wally's picture
Replies 16
Last reply 7/27/2012 - 2:01am
Replies by: Wally, Anonymous, Tina D, Harry in Fair Oaks, Janner
I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC. If the face thing proves to be possitive they intend applying a drug called Ipilimumab and/or Interferan (not Chemo or radiation as apparently that is not effective against Melenoma). Should get results of Biopsy by Thursday or Friday. It appears this is the cause of the pain in my chest - hard to believe because my understanding is that Melanoma is painless.
Is this the right treatment?
Thank you all for your valuable input, much appreciated.
Kindest regards to all the worriors
Wally
The sun shines at the dawn of each new day even though it may not always be visible.

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bikerwife's picture
Replies 2
Last reply 7/25/2012 - 12:11am
Replies by: James from Sydney, Anonymous

Has anyone had gamma knife more than once. We had it in feb for 5 mets and they are gone. We have 2 new ones that will be gamma knifed on aug 13and I'm scared of having this procedure done again. Our dr told me to stop worrying that they got them the first time and can get them again. I do feel kinda at ease about.

Also he's still taking zelobraf which is working wonderful all tumors we could see are almost gone. Why doesn't it work in brain.

Thanks for the help

What God leads u to he will. Lead you through

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LynnLuc's picture
Replies 5
Last reply 7/25/2012 - 1:30pm

This is Brandon, and I am passing along what information we have right now. The two tumors that mom had radiation on a few weeks ago are bleeding, and that is the reason she is in the hospital. She is doing better, but information seems to be much slower coming from the doctors than before. She is going to have another scan to determine if the bleeding has subsided, but we do not know when. It will be within the next day or two. The first scan she had yesterday did reveal two new tumors in her brain. As of now, I know nothing more about those. I will be posting for the time being as the computer is proving to be frustrating for her (it's not exactly in the best of shape). I will pass along information as I recieve it

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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himynameiskevin's picture
Replies 18
Last reply 7/25/2012 - 1:21pm

This was yesterday's update... http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

I sent a few emails out for advice or trial options. One doctor replied to my email, he suggests to stop the Zelboraf, have the radiation oncologist address any growing lesions in my head, and then resume IL2 with or without Zelboraf. (after the break during radiation).

I did IL2 in September of 2010, my first therapy. I  tolerated it well, 14bags, and 9 bags. And although it wasn't my magic bullet, it did appear to get rid of the tumor in my liver. Maybe another round after every thing else I've done could be beneficial? Not sure if people ever have any luck trying IL2 more than once? Or doing IL2 while on Zelboraf?

Just want to see if any of you have any advice or insight on this. I truly trust this Doctor, he's been my guy since day one. But you've all been there since day one too, so your opinions are just as important. Any advice or insight would be appreciated.

-Kevin

 

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