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.

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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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sharmon's picture
Replies 10
Last reply 5/22/2011 - 7:14pm
Replies by: CatLvrBBW, boot2aboot, MichaelFL, SharonK, Cate, Bonnie Lea, Anonymous

I just got word the Amy is Chillin' with Jesus, no longer hurting,

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TracyLee's picture
Replies 4
Last reply 5/22/2011 - 6:39pm
Replies by: dian in spokane, nicoli, Anonymous, Carol Taylor

Hi y'all,

Definitely liking the positive posse support from my last thread!

I am able to have Ipi here locally, I'm probably the FIRST one they've done. So, I expect I will be very well monitored! My local Dr. Peri will closely coordinate with Dr. Sharfman at Johns Hopkins.

I'm so happy not to have to haul across the Bay Bridge in summer beach traffic. God is providing well for me. I go in on Monday, but I am pretty sure that is just pre-planning to get ready to begin ipi in the next week or so.

Thanks to each of you in (or just watching) the posse/ninjas/warriors group! Definitely the best thing I have going is having y'all to vent to and bounce questions off of you!

Praying that everyone on this board has good news in the coming days.

TracyLee

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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Charlotte C's picture
Replies 3
Last reply 5/22/2011 - 6:36pm

I could not log in as Char C so I had to put my full name. For those of you who remember me, I was wife of Bill C.
I haven't logged in for a long while....

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KRob's picture
Replies 1
Last reply 5/22/2011 - 2:21pm
Replies by: boot2aboot

Fellow Melanoma Community Members:

As you may have already heard from MRF, a small group of us from the Midwest region are heading to D.C. to lobby our representatives to enact stricter legislation regarding tanning bed usage. Two of us from Ohio will be speaking to our state's congressmen: Reps. Pat Tiberi, Steve Austria, and Sen. Sherrod Brown. 

I would love to share not only my voice but some of yours as well. If you would like to be part of this effort, please send me a brief summary of your case history (no more than half a page) and a personal message (one paragraph max) to our representatives in Washington that I can share to help persuade them to act on this most important of legislative actions.

(my email address is in my profile - please send all testimonies to that!)

Thanks!

K.Roberts

 

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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dian in spokane's picture
Replies 17
Last reply 5/22/2011 - 8:55am

Today is the second anniversary of my last surgery. I have a long and crooked history of melanoma (which is in my patnet) starting in 1983. I advanced to stage IV in 2008 after 5 years of being NED at stage III. Last year I participated in a 6 month clinical vaccine trial, which I completed in December and I am hoping it will help KEEP me NED for a few more years!

I feel very fortunate that I've not had to deal with some of the worst issues of advanced melanoma. I've had no organ involvement, and my subcutaneous tumors have been isolated and treated surgically.

I have a PET/CT scan scheduled for early monday morning, so keep your fingers crossed for me!

I always like to make note of these NEDversaries here, where people understand me.

cheers!

dian in spokane

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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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Jan in OC's picture
Replies 8
Last reply 5/21/2011 - 9:12pm
Replies by: Jan in OC, dgkendall, lhaley, JuleFL, Anonymous

I just came across this little video about melanoma that my next door neighbor posted on her facebook. She has watched what we have gone through for the last 2 years and has encouraged her whole family to get checked.  She thanks me everytime I see her lol!   I am sharing it with everyone I know.  

Feel free to pass it on.  It made me laugh and cry.

 

www.thatvideosite.com

 

Jan, wife to Dirk, Stage IV (now trying E-7080)

 

laughter is the best medicine

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mommydog's picture
Replies 6
Last reply 5/21/2011 - 11:13am

We just returned from UCSF where my husband received the results from his first post treatment PET scan.  After 8 weeks of taking the trial drugs, my husband's tumors have shrunk 62%.  We were both stunned and thrilled, as was the doctor.  The tumor in his lung was gone completely.

For today, life is good.

 

Deborah

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TracyLee's picture
Replies 14
Last reply 5/21/2011 - 11:06am

I just found out today I'm now stage IV, with small lesions in my lungs.

it has not been a year since I was diagnosed, and I've had 5 surgeries.

I'm now referred to Johns Hopkins for ipi. I can NEVER go to the doctor and stay ahead of the curve. I always get worse news than I expected.

My four kids and husband are all taking it badly, and so am I. 

Friends from church came over when they heard, and I am so grateful. It's prayer or get drunk, and prayer is a better example to the kids! :)

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NicOz's picture
Replies 11
Last reply 5/21/2011 - 10:52am

This is going to be an essay, so apologies in advance...

At the start of March, I started feeling not so fantastic. Nauseous, abdo pain, and these little nodules started popping up at a rate of knots on my neck/clavicle and scalp- "Hold the phone! That can't be good!!" Off to see my GP, and in for a CT which discovered subq's in the abdo, one of which had completely blocked a ureter *rolls eyes* Drama, drama... off to have a stent inserted, then off to Sydney to aim for a brain met trial- 2 weeks later I was enrolled onto the GSK113929 study. Finally!!

(I didn't even ask what the scan results showed at the time. I made the executive decision that the study was either going to work, or it wasn't, and I could probably do without stressing the 'details' of what was going on in my body. It turned out to be the right choice for me on that occasion as my eyes nearly popped out of my head when I read the scan results from the study almost 4 weeks later.)

After a mere 3 days on the study, the nodules around my neck & clavicle had virtually disappeared and the ones on my scalp were reducing in size and pain (I thought my tumours must be making me hallucinate- how could it possibly act THIS quickly?!?). They had been hoping to be able to remove and biopsy several of the subq's and nodules to perform additional research on the effect of the drug, however within 2 weeks they no longer had any of the palpable or visible areas to choose from.

SCAN RESULTS (2 pages- impossible to condense)

MRI- Multiple underlying enhancing bilateral cerebral lesions however most have reduced in size. Left frontal from 14x12mm down to 5x5mm. Left parietal from 12x12mm down to 6x6mm. Right parietal from 11x9 down to 6x5mm. Some of the smaller lesions are no longer visible and this includes the previously demonstrated cerebellar lesions (of which I was blissfully ignorant! :D)

Dominant lesion in right basal ganglia may be slghtly larger at 23x21mm from 20x18 (note from me: THIS lesion had been previously zapped with SRS and I frequesntly seem to have some small growth following several months after SRS which often stabilises and then begins to reduce)

OVERALL: Reduction in size and in some cases resolution of many of the multiple cerebral and cerebellar metastases.

CT: Chest- reduction in size of right upper paratracheal nodule, down to 4mm from 11mm previously. No suspicious intrapulmonary mass.

Abdo & Pelvis: There remain 3 focal liver lesions (Really? I was blissfully ignorant of that, too! :D) One has reduced from 21x18mm down to 14x10mm. Another is persisting at 19x18mm, as does onea small lesion at 9x9mm. There has been a reduction in the right adrenal mass, and reduction in hydronephrosis.

OVERALL: there has been dramatic subtotal resolution of the previously demonstrated innumerabel subcutaneous nodules and significant reduction in size of the paratracheal and axillary lymph nodes, although only slight reduction in the size of the liver lesions.

And how could I forget the indignity of a "persisting nodule in the right flank, reduced from 19x11mm down to 11x7mm." One in my right butt cheek. Pffft! Perhaps I shouldn't have tempted melanoma by telling me consistently that it can kiss my butt cheek, eh? :P

Back in another month for more scans and a chat with the docs.

SIDE EFFECTS: Sore/painful soles of the feet. Were it not for that I'd be tempted to be training for a half-marathon I feel so good otherwise. Am off pain meds completely (fentanyl) and currently weaning of the steroids dex/decadron. And stent should be out in a few weeks when I catch up with uroogist. Now, after a hectic 6 weeks away, I'm going to sit on MY lounge and catch up on some tele and veg out completely.

 

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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