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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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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Rendergirl's picture
Replies 13
Last reply 5/23/2011 - 2:43pm

I found the Bristol Myers site that says Yervoy is now available as a prescription. How come my oncologist didn't tell me that? I don't hear anyone else talking about it either. The only way to get it seems to be to enroll in a trial where you only have 50-50 chance of getting the drug. Has anyone gotten it with a prescription?

Also, I looked up the side effects and they seem pretty serious. Anyone had Yervoy and can tell me what you side effects were like?

 

Becca

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RMcLegal's picture
Replies 5
Last reply 5/23/2011 - 2:03pm
Replies by: RMcLegal, Carol Taylor

May is just around the corner and it's almost Melanoma Awareness Month.  Join me in celebration, with some new lyrics to the Eagles' "Desperado".  www.hotelmelanoma.blogspot.com.

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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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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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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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nickmac56's picture
Replies 12
Last reply 5/23/2011 - 10:11am

As reported before, my wife, Stage 4 melanoma (lung and skin mets, IPI non-responder), had 2 brain tumors, suffered a stroke from one of the tumors bleeding, had brain surgery to remove the tumors, and is now just getting ready for Cyberknife treatment of the remaining microscopic tumor cells and any other tumors which have popped up in the interim. She had her Cyberknife planning scans on Thursday and we should have the plan and start treatment by next Thursday. 

I've been doing a lot of research on treatment options and where we can go once local control has been established in the brain. Most of the clinical trials out there require the patient to be free of brain mets for at least 30 days (some, 30 days from last steroid use) and NIH is 90 days. 

The part that is confusing to me is the difference between treatment of the brain mets versus the systemic melanoma. It appears to me that once melanoma has crossed the blood brain barrier - you are really dealing with two separate "diseases". One is melanoma of the body, two is melanoma of the brain. If, in our case, after successful treatment with the Cyberknife, she goes on to the next step of Interleukin-2 (our oncologist's recommendation) and she is one of the fortunate responders and the disease is eliminated in her body (NED) we still have to deal with the melanoma of the brain because the Interleukin-2 does nothing to address that. Any immunological treatments only address melanoma in the body.

To address melanoma of the brain, you continue to use Cyberknife as needed to control local tumor recurrence or in other brain locations, but then you need to pursue some of the experimental chemotherapy regimes which appear to cross the blood brain barrier to wipe it out in the brain. Whole brain radiation does not appear to offer much in the way of success at wiping out the brain metastases, and comes at a high cost in terms of side effects.

Am I surmising this correctly? Regrettably my wife has suffered some cognitive impairment as a result of the stroke and brain surgery so even though she is technically competent to make her own decisions, I need to provide her as much perspective as possible. Her belief right now is that once the Cyberknife treatment is completed and successful, and then she has the Interleukin-2 and it works, she will then be free of the disease (believing there is  link between the body and brain melanoma). My take is that if the IL-2 is successful, that is fantastic, but we have to separately address the brain melanoma because it has in fact become it's own separate disease because it's in a "colony" different than the body and what works in the body doesn't affect the brain.

Sorry if this is a confusing question, but would appreciate hearing from those who know more than I about this issue.  thanks, 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Nebr78's picture
Replies 7
Last reply 5/23/2011 - 8:35am
Replies by: jag, Nebr78, nicoli, Anonymous, FormerCaregiver

I have Melanoma IV.   I have a friend who is a retired lab technicion in a hospital.  We visit a lot about the rotten stuff. We live in different states.

He knows of 2 people that have gone to Old Mexico for Melanoma treatment. He sent me a letter explaining somewhat about the treatment.  Of course I could not understand all the medical things they did..  They usedHeat-Put patient in High-oxygen atmosphere, - Injected insulin.   High cost  $25,000

Take this for what it is  worth.  I  do know my friend would not lie to me..  He may not have gotten the truth, though..  I did use online chat with American Cancer Society.  They did not know or want anything to do with it.    I am pretty sure that Society does not want a cure for Melanoma as well as the Cancer Industry.   Too big of a business.  You can see I am alittle bitter with all the crap I have gone thru that don't seem to help much. I am going to take 2 pain pills now and go to bed.     With heart disease and 79 yrs. old, I am not interested in it, esp. the $25 thousand.

I am alittle curious if anyone else has heard about it??                               

 

 

 

 

 

 

 

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eaca's picture
Replies 8
Last reply 5/22/2011 - 11:24pm
Replies by: eaca, gtown, KatyWI, washoegal, Ranisa

I promised an update for those interested on my first doctor consultation today.  Here are the details of the pathology report on the mole that was removed - I don't even pretend to understand everything, but I know there are very knowledgeable people here who will!

"Melanoma, invasive, superficial spreading type

Clark Level, III

Breslow Thickness, 3.20 mm

Radial (non-tumorigenic) growth phase, present

Vertical (tumorigenic) growth phase, present

Mitotic Figures/mm2, 25

Ulceration, Present (1.5mm)

Regression, not identified

Vascular Invasion, not ruled out

Perineural Invasion, not identified

Microscopic Satellitosis, not identified

Tumor-Infiltrating Lymphocytes, Non Brisk

Associated Melanocytic Nevus, Present (Intradermal Nevus)

Predominant Cytology, Epithelioid

Surgical Margins: Melanoma in situ is present within 1.0mm of peripheral tissue edges

Comment:  Sections show invasive melanoma, polypoid and ulcerated. There is a small aggregate of nevoid melanocytic cells in the base of the tumor, interpreted as an associated intradermal nevus.

Additional material will be requested to perform an immunohistochemical study for D2-40 to rule out vascular invasion. An addendum will follow."

I felt the doctor and her assistant's were quite good at explaining things.  After meeting with them I had a Lymphoscintigraphy done, blood collected, EKG and chest Xray done.   The technician at the lymphoscintigraphy said that the site was draining to my left axilla.  I am supposed to get a call on Monday with the results and to determine whether the doctor wants an ultrasound done before the surgery.

I am scheduled to have the wide excision of the site along with the sentinal node biopsy done on June 8 (earliest available date).

All of this is quite scary.  The melanoma is deeper and more active than I had hoped for.  Still, the doctor said there was only a 1 in 4 chance that any melanoma would be found in the lymph nodes, so I'll hope for a good outcome after the surgery.  The hardest part will be the waiting to find out.

I had been planning to spend almost the whole summer in France (where I moved from last year). Now I have to delay my departure, but the doctor said that she thinks I can travel after the surgery and while waiting for the results.  She wouldn't do a second surgery if needed until 1 month after the first anyway.  Do you all think it's realistic that I could travel after the first surgery?

Thanks for your interest in reading these sordid details!

Elisa
 

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Part of my husband Don's new pain regimen is OxyContin for long term pain control and Oxycodone for breakthrough pain. It seems, however, that with every new dose of the OxyContin, he develops a low grade fever (99-100) that has to be controlled with Tylenol.

Has anyone else experienced this side effect, and if so, did it go away as you adjusted to the medicine?

He is currently only being treated for pain; we are waiting for BRAF test result. (I did call doctor on call and they weren't worried about it as a one time occurence because the fever is low and he's not on any treatment that would affect his white blood counts yet, but this seems to be a pattern.)

Thanks!

Michelle, wife to 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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