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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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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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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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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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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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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Gene_S's picture
Replies 1
Last reply 5/20/2011 - 8:01pm
Replies by: RMcLegal
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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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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shellebrownies's picture
Replies 11
Last reply 5/21/2011 - 7:48am

...really, really well! (Warning: This will be a mini-novel...)

Oh what a relief it was walking into the office and making a fresh start! They had warned us that our initial visit could take up to 3 hours, which was music to our ears, personally.

As Don and I waited for the nurse practitioner to come in (we would get an hour with her and an hour with Dr. Lawrence), one of the nurses I had spoken to on the phone popped into the room and introduced herself and shook our hands and told us to call anytime if we had any questions.

The nurse practitioner Krista Rubin was extremely nice, very knowledgeable and very professional. As Don was going through his disease history with her, she was following along in his medical records, asking every once in a while, "That was Dr. X right?" or asked clarification questions. It was obvious she'd actually *read* his case file in advance (not so at our other first appointment).

Then she talked to us about the disease progression, had mentioned that it was highly unusual for a melanoma caught as early and was as thin as his was (.43mm... that's the first time I actually knew that information) to morph into what Don ended up with. She suggested the possibility of an earlier, unknown primary that his immune system had gotten to, and while it didn't affect anything with his current situation or treatment, it might help put to rest the "How did this happen?" feeling.

She looked Don over carefully from head to toe and then did it again with a black light, looking for depigmented spots that would support the earlier primary theory. She didn't find any, however, and had to conclude that probably it was the original spot that must have left behind a few cells deep in his epidermis that were missed in his WLE. Don't know why, but even though it didn't change anything, at least her trying to give us that information made us feel better. (This was the first time anyone looked him over with a black light also)

Then she asked us questions about whether we had kids, and then said at the next appointment, they would arrange for us to see the Social Worker they have on staff to help us help our kids deal with what was going on. She wanted to know if we had told the kids what was going on yet and what our interpretation of what was going on with Don's disease was. She said they like to make sure that the doctors and patient are on the same wavelength in their understanding. I think she was convinced pretty quickly that we had a good lay of the land in that regard.

She asked Don about his diet, how well he was sleeping, his pain management, all things that he had not been asked up to that point. Then she went out and after a few minutes she came back with Dr. Lawrence.

Dr. Lawrence was very personable and very pleasant. Again, it certainly felt like he had read up on our case in advance. He told us that he could only imagine the whirlwind we had been on in the last 2 months and how tough it must have been to get bad news every time we got more results back.

So he said he was going to start at the basics. He wanted to know about Don's eating habits, could he move bowels well, how well was the medicine managing his pain, was he having other health issues. Then he told us that they could manage Don's pain *much* better than it was currently and that they were going to get him on a better laxative to keep things moving better, so to speak. He asked Don if he was having any depressive issues, trouble sleeping, etc. because he wanted to treat the whole person, not just the cancer. He recommended a little Ativan for Don to take at bedtime just to help him sleep better.

So, then Dr. Lawrence, who knew we already knew all the bad news, started telling us what was *good* about Don's current situation: that once his pain was better managed, he would basically be considered asymptomatic, which meant that put him in a place where Don would have more treatment options, seeing that Don did not have any other health issues going on and had maintained his weight well, etc. He told us that the CNS involvement reported on the most recent MRI (spread to the sheath of the spinal cord) was a "soft call" and that after checking the scans himself, he didn't think it was an issue at this time, which meant he was not ineligible for the trials as we had been afraid of. He also said that Don only had minimal involvement of the liver and lungs, which was also good news, as well as there not being any mets in Don's brain. All of these things made Don's case less complicated to treat, he said.

Then he asked us if we had any questions or if we wanted him to go over the treatment plans. We said we'd like to hear the treatment plans and then we'd ask questions if we had any. (Hooray, treatment plans actually discussed!)

Dr. Lawrence said his first line of action would be to get Don into the BRAF/MEK trial if he turns out to be BRAF positive. Don's results should be ready in about a week, maybe less, and Dr. L wanted to wait for those because he felt that Don could be potentially very successful on it and that it had been shown to shrink tumors very quickly, which would preclude the need for radiation.

However, that being said, he wanted to get all the ducks in a row in case the test came back negative. So, he is having Don meet with a Radiology Oncologist that Dr. L thought very highly of in a satellite office closer to us (so if this is the route we take, we wouldn't have to travel to Boston for the treatments) to prepare for getting Don localized radiation treatments for his pelvic and right arm areas to keep the growth in check while he starts Ipi.

There was also talk as a plan B/C of trying to get Don on the Ipi/GM-CSF trial but that he would have to look into it to find out if short burst radiation treatments would be allowed on it or not.

Either way, as soon as we have the BRAF results back, there will be a plan in place that will immediately go into effect.

In the meantime, Don is to check in daily with the nurse practitioner regarding his pain levels and his bowel movements so they can tweak treatments/medications if needed.

 

Overall, a very satisfying experience. Everyone was kind and knowledgeable, and treated us like people. Every treatment that Dr. Lawrence recommended, he told us about length of effectiveness, side effects, etc. In other words, he kept it real but left us with a real sense of hope that treatments could still help Don.

Michelle, wife of 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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Anonymous's picture
Anonymous
Replies 6
Last reply 5/19/2011 - 8:59pm

Hi people. My name is Meagan. I've been fighting melanoma since 2004 . I am 24 years old. I'm about to start my 5th different type of chemo treatment next week. Ipilumbab (IPI)
I was wondering is anybody would mind letting know What to expect from this drug. Side effect wise.
I have a tumor in my left groin area.
Will my hips swell?
Does it effect appetite?
Will I lose or gain weight?
Is it flu like symptoms?
Any info would really help me out alot and help me feel alot more confident in starting this treatment.
Thank u for ur time and consideration.
-meagan

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I've been thinking of her.

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I've been thinking of her.

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I've been thinking of her.

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TracyLee's picture
Replies 10
Last reply 3/11/2013 - 1:40pm

I'm in "lower, slower" Delaware. Anyone else on this board from Sussex County, DE or possibly the Eastern shore of Maryland? There is not a local melanama group that I can find in my area...just a lot of breast cancer groups. Naturally, their issues/treatments are not the same as mine, so I've not attended anything they offer.

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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TracyLee's picture
Replies 14
Last reply 5/21/2011 - 12:16am

Hi all,

Since I often post whiny posts,  I thought you'd enjoy a more upbeat post!

Excellent consult with Dr. Sharfman at Johns Hopkins yesterday. I'll begin ipi/Yervoy, probably next week. He was wonderful, I HIGHLY recommend him to anyone in the area of Baltimore (or willing to travel).

As another positive note, my husband is finally "getting it", but in a good way. He's on board, his employers are very very supportive, the kids are being helpful (as much as 20, 18, 15, and 14 can be, in between being normal teens/twentysomethings!). The house is even clean, most of the time. :)

While beginning ipi, Dr. Sharfman is testing me for BRAF, also.

Although I was very discouraged Monday due to moving to Stage IV, I greatly appreciate not one but two doctors taking the time on Tuesday to call me and let me know the brain MRI was clear! And even more so, I appreciate the support on this board in your responses.

God is good, all the time. Family, friends (especially here, where you all understand), physicians. I've got my posse, and I'm on the move towards NED...soon!

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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