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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Lauri England's picture
Replies 6
Last reply 5/25/2011 - 2:13pm

Every since I was diagnosed with Stage IIIC melanoma on my right shoulder June 2, 2010 I do monthly checks on myself.  3 weeks ago I felt a small lump in my arm pit under my left arm. It was actually so small at the time that my husband could not even feel it.  I am 7 1/2 months into Interferon treatments.  I waited to see if the lump changed at all or went away because I know Lymph Nodes swell sometimes do to infection or sickness.  Last Friday I noticed it had gotten a little bigger, about the size of a marble and can easily be felt now.  It is not painful and it feels kind of soft.  I saw my Onc Doctor yesterday and he appeared to be pretty concerned and wants a biopsy as soon as possible.  I now have an appointment for consultation next Monday with surgeon.  I am glad it was so soon.  They are not sure if they will do the biopsy that day or schedule surgery.  I am trying very hard to stay positive as this could be nothing.  Has anyone else had a similar experience?

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

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Replies by: jimjoeb, mcanova, Lisa13, washoegal, Anonymous

I'm having this procedure on June 10th. Can someone explain the actual procedure to me and what I can expect immediately following the surgery and in the short term after that.

I'm scared and the more facts that I have, I'm hoping it will help to at least eliminate the fear of the unknown. I had my WLE and SLNB on May 3.

Be Not Afraid-God is with you always Stage IIIa

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boot2aboot's picture
Replies 6
Last reply 5/25/2011 - 11:07am

i got my pet scans back...the 'hot spots' were arthritis, not mel...after doctor shopping and lot's of reading and interviewing and indecisiveness...i am going to do bio-chemotherapy for my stage 3c diagnosis...if my insurance won't go for it...will try to get into the pittsburg study (ipi vs interferon)...i start june 2...wish me luck

boots

don't back up, don't back down

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mygirlmaddy's picture
Replies 11
Last reply 5/25/2011 - 9:43am

After a year and three months of nothing but bad news, and treatments that have caused worse side effects than anything the cancer has done with no success, I just want our lives to be normal again.  We have been through two surgeries, Ipi clinical trial, IL2, BRAF testing only to find out he doesn't qualify, Ipi compassionate which has swelled his pituitary gland so it is no longer functioning.  I know people have dealt with this for longer than we have, but our lives are constantly being turned upside down.  We have a 13yo daughter we have to leave home to deal with this on her own, while we trek to Boston for treatments or he ends up in the hospital unexpectedly.  If we had just a glimmer of good news, I might feel differently, but now we are looking at going to NIH for three weeks for TIL treatments with even less hope of success than anything else we've tried.   His disability is almost out, his fmla time is up.   In less than three months we will be without income and without health insurance unless we pay exorbitantly for it.  Social Security/Disability has a six month waiting period and you have to prove that the condition will end in your death.  Just needed to vent.  I would never say any of this to my husband.  I would encourage him to fly to mars if it might make a difference, just feeling overwhelmed with the news that yet another treatment has failed him.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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TracyLee's picture
Replies 7
Last reply 5/25/2011 - 7:42am

Hi y'all,

Well, I'm going to be the first Ipi patient at my cancer center, and probably in all of DE! I figure the upstate folks get sent to Philly or Baltimore. I go in on Friday at 9 a.m. in Lewes.

God has blessed me with the ability to drive 20 minutes to my treatment, instead of almost 3 hours away.

Any suggestions or ideas, other than dress comfortably and take a good book? Both my husband and best friend would like to go with me, is that even necessary? (They've both missed a LOT of work just hauling me back and forth for four surgeries this year). I appreciate their support, but if I really won't need them, I'd like to "save" them for another time.

Posse, here we go. I told the physician's assistant doing my assessment, that I would have an excellent outcome, with no side effects, and set the gold standard for any folks who come after me!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Anonymous's picture
Replies 11
Last reply 5/25/2011 - 6:25am

Hi all, I am from South Africa.

I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

Subsequent CT Scan confirmed this but all blood and sputum tests were negative for cancer. Doctor advised me to wait 6 months and have scan repeated to see if any growth in lesion evident.

Visited Oncologist for annual check-up following ear surgery and I told her of recent developments.
She suggested a PET scan and this confirmed possible cancerous tumour.

Surgery suggested and Metastasis Malignant Melanoma stage 4 removed April 2011 (3,5cm by 5 cm cut away). However, no signs of any spread identified.

Saw Radiologist to discuss possible treatment and wait & see approach suggested due to lack of evidence that the mel had spread to any other part of my body. Will revisit in August for further X-ray and blood test.

My concern is, will this spread or not. What I have read up so far indicates that stage 4 is incurable. However, if it has all been removed then surely this will not happen or am I wrong? Is there a possibility that it could already have spread but just does not show with the tests they do? The negative possibilities are freaking me out.

Any input will be greatly appreciated or additional info supplied if required.

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boot2aboot's picture
Replies 8
Last reply 5/25/2011 - 4:17am
Replies by: Anonymous, ShariC, boot2aboot, RMcLegal, nicoli, FormerCaregiver

Anyone tried Bio-Chemo as adjuvent therapy and how did you do?

did you do radiation b4 or after this?

what were the pros and cons?

i am seriously thinking of going this route if my pet scan is clean...there are some questions concerning my spine and hip...

boots

don't back up, don't back down

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Hi there,

Just wondering if there are any others out there who are travelling the same road as me right now?  Ive been taking the pill for only 4 weeks today, and although i havent been scanned (2 weeks time i think) I am seeing some dramatic results in the many skin nodules i had.!!  Yipee Hooray!! Just hope and pray that this pill is working its way through my insides as well!!  & also I pray that it is working for any of you out there as well xox

Some little questions about my feet?? the soles of them are covered in blisters.  Blisters that hurt and make it virtually impossible to walk on??

Also, this rash? Its been there for few weeks now, and is mighty itchy!!  It has settled down a lot, compared to the first few days, but is still very irritating.  What cream are others using to treat it? especially on the face?

Thank  you, take care, god bless & keep smiling :-)

Simmy

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could you all go down this row of posts and read the one from entitled "melanoma back after 22 years" I feel this person could use the advice of people familiar with the Canadian Health Care system

thanks,

dian

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julieannveronica's picture
Replies 4
Last reply 5/24/2011 - 12:08am

My 73 year old mom had a craniotomy in February.  It was stage 4 melanoma.  She had a mole removed from her neck in 2003.  after 10 full cranium radiations and 3 cyber knife shots to a small spot on her left lung - her PET and MRI came back free and clear on Wednesday.  She was very flat when she heard the news.  The next day she seemed happier and told me it was starting to sink in.  On Friday she seemed more disoriented and sad/flat.  Confused.  she is tired and not eating much.  Someone that had had the same operation 4 or more times said she needs some Ativan.  Any feedback?  she is on Leukine - 14 days on and 14 off.  no reactions to the leukine.  What do you think?  thanks

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HollyShoe's picture
Replies 7
Last reply 5/24/2011 - 12:00am

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

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gtown's picture
Replies 4
Last reply 5/23/2011 - 9:56pm

Hey what's up.

I'm still awaiting biopsy results from tumor removal ( 1.9 mm approx, nodular, non-ulcerated 7 mm mitotic rate) and SNL from armpit area. The doctors at Penn hospital said they wouldn't advise interferon if it hasn't progressed to the lymph nodes. They really wouldn't discuss any therapy until the results come back, which I understand. I took interferon or pegintron for 6 months to cure Hep C and was able to work construction as well as run about 15 miles a week. I had to inject myself once a week. I want to know if the interfveron treatment  for melanoma is similiar to this? Ihave read about high dose interferon where they give you an IV for 5 days straight and then you self dose, but I can't find any info other than the basics so I decided to come to the experts to get the lowdown on this therapy. Any and all info concerning this would be greatly appreciated.

                                                                                                        Thanks

                                                                                                          Gtown    

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Carol Taylor's picture
Replies 7
Last reply 5/23/2011 - 7:42pm

Sonce we've had so many newly diagnosed melanoma warriors join our ranks lately, all needing the same general info, I thought it might be helpful to corrale general stuff. Please add to the list.

1. Remember we're all different. Get advice and opinions from good, reliable sources, like here, but then, know yourself. Know your body, your medical history, what you can tolerate and what you can't. Make informed decisions, as best as you can realizing nothing is guaranteed, then proceed and don't look back. Don't second guess yourself. It won't help. The clock can't be turned back, so do what YOU think is best for YOU.

2, Do that under the care of melanoma specialists! I don't care if your general oncologist is your dear favorite uncle, get a referral and be treated by a melanoma specialist. That is vital! Your dermatologist, oncologist should you eed one, and surgical oncologist should ALL be melanoma specialists.

3. Don't let fear, panic, or anger rule the day. They are all normal reactions to a new diagnosis and all can be great motivators, BUT, they can work against you and paralyze instead of spur on. Attitude is key and a positive attitude is actually scientifically proven to be beneficial in a multitide of ways and an attitude of gratefulness. You can't control melanoma BUT you CAN control how you respond to this. It may take you a lot of selk-discipline to be positive but you can learn, It may come easily. It will be to your benefit to keep a good attitude.

4.Remember, your pharmacist is also a valuable resource! I'm married to one, mother to another, and sister-in-law to one. There's a mutant gene in my husband's family...they aren't the only ones, so I've seen these folks up close and personal in a way many of you haven't. They KNOW their drug interactions! Our doctors DON'T.  Shocking, but true. They know what side-effects you might experiience and can counsel you about them and when you need to call your doctor.

5. Because of number 4, please make sure you have ONE pharmacy you deal with. You have many doctors and maybe many meds. You want the best prices on all of them and that may mean you take different prescriptions to different pharmacies, or even order online. One, online, you don't get the professional counsel and you're short-changing yourself. Multiple pharmacies and online shopping both will present another problem...all your meds aren't listed together so know one is able to spot possible drug interractions that can cause real problems. It may cost you more in dollars to have all your scrips filled at one place, but you'll save in other ways that you can't put a price tag on...unless you experience a costly drug interaction problem that could have been caught and prevented had one pharmacy known ALL your meds.

Group, please add.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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jag's picture
Replies 1
Last reply 5/23/2011 - 4:49pm
Replies by: Rebecca and Bob

BRAF trial?

if so, please elaborate on your: response/mutation/etc.

Insert Generic Inspirational Motto Here

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Carol Taylor's picture
Replies 7
Last reply 5/23/2011 - 4:46pm

This bulletin board knows her as "carolb" or Carol Bellinger. She's, right now, on bag 5 of IL2 and tired. The first couple of bags were tough on her side effects-wiise but the family reports that she's stubborn and getting up though she's not supposed to.  Like I said, yesterday was tough and scary. Please hold carolb in prayer. She's one tough, determined, strong in her faith lady.

Thanks.  BTW, I have the family's permission to let you know how she is and what's going on with her.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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