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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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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rrrule32's picture
Replies 10
Last reply 11/2/2012 - 12:03pm

Hello All,

My fiance, Kaitlyn, has been on Zelboraf since July 20.  Well, last week we started noticing some new growths in various different areas.  Not only that, but they seem to be growing fast. 

Now we're trying to figure out what's next for her?  Are there really any other decent options?  She's been on IL-2 and Ipi.  She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again. 

Has anyone tried the combo of Temodar + Ipilimumab?  I'd like to do that one because Temodar gives fast relief, and Ipi can build the immune system up.  When she was on Ipi, it actually did start working, but because of complications with her brain mets, she had to be taken off of it.

Any advice would be greatly appreciated.

Thank you,

Travis

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Jocks wife's picture
Replies 1
Last reply 11/3/2012 - 1:45am
Replies by: DeniseK

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

Login or register to post replies.

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

Login or register to post replies.

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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awillett1991's picture
Replies 5
Last reply 11/2/2012 - 10:02am

Just finished 2nd dose of Ipi and diagnosed today with 2 brain mets - 4 mm and 6 mm. Bummer since only been off Zel 4 wks and was told brain was all clear. Anyone have experience with doing radiation in between Ipi treatments? I think there were some trials based on some effects they had seen at Sloan where radiation seemed to have turbo charged Yervoy and it then attacked the melanoma all over the body like crazy. Looking at SRS to zap these 2 critters as soon as possible.

Thanks.

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