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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DeniseK's picture
Replies 16
Last reply 11/5/2012 - 8:09am

Hey all!

Well I got the biopsy results back yesterday from the subcutaneous tumor that was growing on my arm.....Sure enough it's melanoma.  URG!!!  Surgery next week after Pet scan on Wednesday to make sure it hasn't spread anywhere else. (fingers crossed)  They said I was high risk to recur and sure enough I did!  It was just over a year.  So now I guess I'm going back to the Melanoma Center in San Francisco to determine what kind of treatment to do.

It was so hard telling my kids last night and it's scary to think about the future.  I guess if I was going to recur my arm would be the best case scenario vs any organs.  My doctor said that I will likely have these nodules pop up here and there.  The tumor started out the size of a BB when I noticed it and grew to the size of a marble/grape in about 2 months.  I have another one that is the size of a BB just below my belly button that we are going to remove and test too.  That one wasn't biopsied since it was so small but we're going to take it out just in case. 

I know a lot of you have been fighting and it amazes me the strength and courage you all have.  I am in this to fight as well and any input to what kind of treatments have worked or are working would really help me.  Someone told me about a Doctor in Germany that can cure melanoma.  Has anyone heard of this?  What about diet change or any other things I can do?  I refuse to go down without a fight!! 

Also I'm on unemployment right now and have temporary insurance until December 18th.  Could I get social security/disability?  How do I go about getting that so I would have insurance?

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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mama1960's picture
Replies 3
Last reply 11/4/2012 - 11:26pm

I had the node dissection in right groin Oct. 1. Superficial and deep. 28 nodes taken and only one positive. Good news! Still have two drain tubes. The drainage started to taper off, then I went back to work this past Monday. Went way back up. The doc at MD Anderson said to scan and watch and did not recommend any additional treatment. Seeing local oncologist 11-14. For me, this has been a tough surgery and recovery, but the worst is behind me, I hope.

It is what it is.

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Tina D's picture
Replies 20
Last reply 11/13/2012 - 11:14am

My husband and I have been thinking a lot lately about choices we will face next month when I get scans again. My first set of scans showed complete resolution off every tumor ( we are continually thanking the Lord for that). I know that Z seems to cause a resistance that tumor cells can develop after time. My question is this. If the next scans are clear, wouldn't it seem to make sense to discontinue the Zelboraf and continue with frequent scans to monitor? If the cells are not constantly bombarded with Zelboraf, it seems they would be less likely to develop resistance to it. I know I am not as smart as the Drs ( not even close) but I also recognize that there are a lot of unknowns yet with zelboraf. I told my husband that the group of patients on this board have to be the most well informed group of cancer patients anywhere, and you have experience from institutions and Drs far and wide. I feel as if you are a tremendous resource of information, ideas and support. Has anyone broached this question with their Dr, or heard any evidence one way or the other? What are your thoughts? I have only been on here since May, but have grown to highly value your input and opinions.

Thank you,

Tina

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Moodypoodle's picture
Replies 11
Last reply 11/4/2012 - 6:37pm

In February I had a mid-foot amputation when the non-healing wound on my foot turned out to be Acral Lentiginous Melanoma.  Afterward I declined the interferon treatment due to the iffy results and certain diminished quality of life.  I am 71 y/o and QOL is a priority.  Quality of life was already compromised by the half foot thing.  I kept thinking things would get better; after all, amputation is pretty radical.  Six months or so after the surgery I started developing these little plastic-like pimply things on the amputation scar.  Plus some little red dots started showing up around the area.  My primary care physician sent me to a dermatologist at UAB who was not particularly concerned at all.  That same week I had a routine appointment with my oncologist who promptly sent me to the Wound Center for biopsy and scheduled me for immediate PET/CT.  Did I mention I also had egg sized lump in groin?  I’m sorry I still don’t have all the jargon down in spite of reading this site daily.  Anyway, it was the Wound Center doc who dropped the bomb: the melanoma was back and this time there were mets in lungs, liver and abdomen.  Oncologist confirmed diagnosis.  Both suggested I should look at getting my affairs in order.  My husband was/is a basket case.  I’m opting to do YERVOY and had my first infusion Monday.  It’s Friday now and so far so good.  This is definitely the short version of what is going on.  I just want (need?) to connect with others in the same boat.  Oh yes, those little plastic bumps?  They are now full-fledged lesions and the little red dots are spreading up the front of my leg.  A little ray of sunshine in all the gloom and doom, my brain MRI came back clear.  I was in the middle of Walmart when onc called to give me the good news!!  My biggest fears are pain and losing my ability to think clearly.

Every Second Counts!

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casagrayson's picture
Replies 2
Last reply 11/3/2012 - 11:09pm
Replies by: casagrayson, Janner

My husband has had two primary melanomas removed.  I noticed an oddly pigmented area on his jawline that the dermatologist almost didn't biopsy; it was a shallow melanoma that was removed in 2002.  This spring I noticed another flat, pigmented area on his scalp; it also was a shallow melanoma.  Neither one of these were deemed to be serious nor was he referred to an oncologist.  Last week he went back to the dermatologist because he had developed a nodule underneath the skin on his arm; it had been growing for over a month.  A biopsy was done, and it came back as inconclusive.  The specimen was sent off to a Univeristy for further evaluation, and those results came back as "recurrent basal cell carcinoma".  I should be jumping up and down with joy, but I'm concerned because he has never had a basal cell carcinoma in that location!  Is there any possibility that this could actually be a melanoma metastasis?  He is scheduled for a Mohs procedure next week.  Should we push for the "slow Mohs" given his melanoma history?  

Thanks for any direction you can provide.

Strength and Courage,

Susan

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Angela C's picture
Replies 7
Last reply 11/3/2012 - 9:52pm

Hello.

I got back Tuesday from a follow up visit at NIH. I did the IL-12 TIL trial in April and have been on monthly scans and follow ups. Last month I had a new brain met. I had SRS at the beginning of October. Unfortunately, my adrenal gland tumor continues to grow and now I have a new spot behind the pancreas as well. I'm now officially a non-responder to the TIL trial. So, now it's time to find something new.

I'm checking into a MEK trial. I'm wild type BRAF, though, so I'm trying to find one that doesn't require the mutation. I'm also considering an Ippi reinduction. The doc at NIH said my immune system is different now, so I could have s better response to it the second time around.

I was hoping to do surgery and take the adrenal tumor out since I'm now having a fair amount of pain from it. But, it's pretty much inoperable at this point.

So, it's back to limbo land now waiting to hear from docs and trying to make a decision on the next step. I hate this part. There's so much anxiety knowing the current treatment isn't working and trying to find the next step.

Do any of you have experience with a MEK trial for people without the BRAF mutation?

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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CarolA's picture
Replies 3
Last reply 11/3/2012 - 2:37pm

Through the seven+ years I've been coming to this forum, I retained information that post WLE and SNB, there was a window of 57 (?) days to choose to do interferon.   Where the heck did I come up with this?   I tried looking for this fact, and I can't find it.   Is there factual basis for this?   I know there was a good post that EmilyandMike put up (10/12/12) with different physicians opinions on Interferon.   I know there is great debate on interferon usage/success.   But what I'd like to have cleared up for future warriors is this time frame business.   I don't want to spread inaccurate information (which I sort of did in another post, which is prompting this one).

CarolA 

CarolA

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Hi everyone.

So last Monday they did a patch test with the DPCP on 3 different areas.  One of them had a reaction, so that means my skin' sensitized; Monday i will go in for application to all my many mets. 

they took 2 biopsies, and the bandage on one site caused such a bad skin reaction...so now I'm allergic to Benzoin, Mastisol (spray adhesives usually used before applying steri-strips) and some bandage adhesives. Next biopsy I'm going to ask for either surgical glue or a steri-strip with no spray. 

the reaction site from the DPCP isn't bad, not at all like the one Dave in So Cal got!

And in Hurricane Sandy news:  many  New York and New Jersey residents and even hospitals continue to have no power.  Long Island railroad is hobbling to start up and actually doing a very good job.  I live on Long Island and while I got power back yesterday, most neighbors continue to be without.  Midtown, Holland and Brooklyn Battery Tunnels remain flooded.  My husband was scheduled for revision knee-replacement this past monday; is now rescheduled for Saturday.  A colleague was scheduled for prostate cancer surgery; he hasn't been rescheduled yet and remains very anxious, as we can all well understand.

My colleague and I drove a distance to get the only LIRR train running this morning.  Once there, we got into Penn Station with no problem.  Others chose to drive in and spent 3-4 hours on the road!  streets remain closed with trees/power lines down. The roads have a very erie feeling and only about 1 in 50 gas stations are open.  VERY long lines at the ones that are open, and prices are being gauged big-time.  I hope someone cracks down on them, especially when other businesses (supermarkets, etc.) who don't have products to sell are letting people store their frozen foods in their freezers, giving away ice, etc.

I'll check in after Monday's DPCP application.

have a good weekend,

karen

Don't Stop Believing

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dian in spokane's picture
Replies 11
Last reply 11/8/2012 - 4:30pm

Hi,

It's been a while since I was on here, so some of you newer folks won't recognise my name. Briefly, I have a very long history with melanoma, most of it was stage 1, but I advanced to stage 3B back in 2003, followed by high dose interferon and then to stage 4 in 08 with distant subcutaneous mets that were surgically resected, and followed with the MAC/VAC trial, which I completed in 2010 I've been in complete remission since then

We've been following a single nodule in my lung since last year, which, although it has grown slowly from 8.8 mm to 13, has now increased in SUV to 10.1 My oncologist is virtually certain it is cancer and suggested SRS to treat it.

I also have a long history of false alarms in my lungs too, so I'd like confirmation of what we are dealing with before treatment so I am scheduled to see my pulmonary doc for a possible biopsy.

Back when I was studying such things obsessively, I think that radiation was not considered to be very successful foro melanoma treatment. Have things changed?

I know that there's a chance that biopsy attempts will be unsuccessful, so I'm wondering if I shouldn't just get a thoracic surgeon consult and go directly for VATS..then at least we'd have material to biopsy afterwards

I'd love any imput, particularly on any new types of biopsy options for lung mets, and/or input from anyone who has had SRS on the lungs.

And..to forestall questions on the topic, I have never been BRAF tested, and don't think we'll be looking at either zelboraf of yervoy at this time. As long as it's a single nodule, I'll be saving that treatment for the future.

thanks folks,

 

dian in spokane

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yoopergirl's picture
Replies 3
Last reply 11/6/2012 - 9:32am
Replies by: Greenbug, Anonymous, NYKaren

I woke  andup the other night with itching and BUGS, mind you we have NO young children at home or grandkids/ I used the shampoo and comb, no clue where they came from.         I finally got my wheelchair so am gettting around a lot better. my legs juat give out on me. Hubby had to take all the heavy bedding to wash, he will .be gone all day today so hope I do okay with not help  .

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Jim M.'s picture
Replies 8
Last reply 11/7/2012 - 8:47am

Hi everyone,

 I want to thank all those who have brought me to this milestone: my medical team at Moffitt and elsewhere, fellow warriors, my family (biological and Christian), and all who have had a hand in encouraging/supporting me. Most of all I thank my Savior, Jesus Christ for all the blessings he showers upon me. There is always hope! Never give up! This is a wonderful community eventhough we never wished to be a part of it.

God Bless you,

 Jim M.

LND to right axillary: 11/07

radiation: 12/07-1/08

Ipi with peptide vaccines: 3/08-11/08

Stage 3C

NED!

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/2/2012 - 12:18am
Replies by: doriniel, POW

So just had my 6 month ct i have been off and on zelboraf for 15 months. I now have a subcutaneous tumor that has grown in size. I have only been taking zelboraf half strength due to side affects and only one week one and one week off. So here is my dilemma do i increase the dose and take it steady and suffer through the side effects (terrible feet and joint been, low energy, nausea) and give the zelboraf another go? Or do I switch to yervoy. or do I join a new clinical trail ( if any are available) any ideas. all other tumors are gone or are littler than previous only have the one that tripled in size.

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amandamini's picture
Replies 7
Last reply 11/2/2012 - 10:47am

Hi all,

 

I was diagnosed in Oct. with stage 2 clarks level 4.  I had my SNB and WLE and all was clear!  That was great news.  My plastic surgeon then referred me to an oncologist to get a PET scan.  Today I met with the oncologist and was surprised to find out that he recommended me going on Interferon for a year.  What can I expect as far as side effects?  Please let me know your experiences with this drug. 

 

Thanks for your help with this!

Amanda

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bekahboo82's picture
Replies 2
Last reply 11/1/2012 - 7:01am
Replies by: AngelaM, Janner

Hi all.  I just received the bad news that a lesion I had biopsied yesterday by my Dermatologist is a Melanoma-in-Situ.  This is now my second one.  I had my first one 3 years ago at age 27.  I am, of course, losing my mind with worry.  It might be a little easier if I didn't have a 3-year-old at home that I am not ready to leave anytime soon.  I heard it is rare to have more than one primary.  Anyone have this or heard of it?  How long am I going to be lucky and keep finding these at this early stage?  I feel like there is more going on in my body that is not being seen but I have not been successful in convincing my doctor to scan me.  Is it possible to go my entire life with only having Melanoma-in-Situs?  Is it possible to never have one spread beyond the top layer?  I'm sorry I know I am rambling I am just grasping for straws.  Thank you in advance for your insight.

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Richard_K's picture
Replies 11
Last reply 11/5/2012 - 3:26pm
Replies by: Richard_K, fdess056, Anonymous, wolkies, aldakota22, NYKaren

 

Has anyone heard how Dr. Pavlick or anyone on her staff got through Sandy?  Hoping they and their families are all ok.

Also, does anyone know what is going on in lower Manhattan? Is there a status of when the Cancer Institute will reopen?

Hard to believe the havoc Sandy brought to the area.

Dick

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