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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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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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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slpinion's picture
Replies 10
Last reply 5/21/2011 - 12:18am

Hello,  I have recently been diagnosed with melanoma and am open to information and encouragement from those who are already walking this path of surgery / treatment / survival.

My story....... I am a 4th grade teacher, and while I was on spring break in early April, I had a biopsy completed on a skin mole that had recently changed colors. The biopsy results came back as malignant melanoma (cancer - stage I), and I was referred to a surgical oncologist. After meeting with the surgeon, the plan was to have a lymph node trace completed and the "suspicious / hot" lymph nodes were to be removed surgically. At this time I was told there was a 6% chance that the cancer had spread to the lymph nodes......and my thoughts were very positive because I knew that meant there was a 94% chance that the cancer had NOT spread. So, 5 lymph nodes were removed and sent to pathology after the lymph node trace on May 3rd. 

Unfortunately, 1 of the 5 nodes that was removed was positive (25% of the node itself was malignant tumor). I went from cancer-stage I to cancer-stage 3. 

Now I need a PET scan, a CT scan, and a brain MRI, to see if the cancer has spread anywhere else; those scans will be completed Thursday, May 19, 2011. Another surgery (which will require hospital stay) will be scheduled (as soon as the PET / CT / MRI results are available), and all the lymph nodes in the area of the right underarm down to the original melanoma site will be removed and sent to pathology. IF there is any indication that the cancer has spread beyond the lymph nodes, that will put me at cancer-stage 4. About 2 weeks after all the lymph nodes have been removed from that area, I will start treatments.

I WILL be completing the remaining days of the school year and packing up the classroom. I will have the summer break for the second surgery, treatments, rest, & recuperation.

While it is difficult to stay strong, I continue to look up and count my blessings.......like having two outstanding sons (after being told I would never have children) who are both college graduates, and they have jobs! In the words of one of my sons this past week, "You're a great mom who has loved and guided us well. What other mother can say she has raised both an engineer and an architect? You've done very well by us, mom." What better praise can a mother have than that? ;-)

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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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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Anonymous's picture
Anonymous
Replies 7
Last reply 5/20/2011 - 10:11pm
Replies by: annabanna, lhaley

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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dawn dion's picture
Replies 14
Last reply 5/20/2011 - 10:03pm

After a verrrry long 10 weeks of PET scans, biopsies, CT's, MRI's, ECHO's, EKG's and many blood draws I am finally starting my new trial.  After having ipi fail me and testing positive for a gene change (much to the excitement of my Dr.  - still not sure how excited I am) I now start  the B-RAF/MEK combo.   Here's hoping that it works because I am really tired of being poked and prodded.    I swear I don't know how some of you stay sane! :)  I know why you do it - believe me I get it, but sometimes this process really pisses me off.  So I'm putting on my big girl undies and do what I have to do win this war!  

Now enough of my whining - Any input from anyone who is on the B-RAF/MEK - I would love to hear from you.   Many of you out there have posted amazing stories on this forum and might I say THANK YOU!   It really makes it easier to live in this world  when you know you are not the only one out there fighting the fight and surviving all the odds.  It's a impressive bunch.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Gene_S's picture
Replies 1
Last reply 5/20/2011 - 8:01pm
Replies by: RMcLegal
mimi0201's picture
Replies 10
Last reply 5/20/2011 - 7:49pm

Does anyone have any idea of what the status has to be in order  to receive Yervoy?  When is it too late?

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Terra's picture
Replies 5
Last reply 5/19/2011 - 10:30pm

Hi, Derek was taken off of his P13K/Mek inhibitor trial in Toronto because the breakdown of a muscle enzyme was too high - we really thought it was doing something, he was on it for a month and was feeling really good. He has been off it for two weeks, we are now waiting for ipi washout period which is 28 days I think this is too long, scans showed lots of melanoma before original trial - 3-4 in bones, inumerable mets in liver, 1 in kideny, and some in muscle, and possibly other places. 

Very afraid of brain mets.  Derek is taking small naps here and there, eating well, doing some light work at home and our rental properties. I guess you can't tell looking at him what is happening, he does seem to be very forgetful which is not like him at all, but I just don't know what to do in the meantime while we are waiting - Should I push for sommething in the next two weeks or I guess the wash out period is for anything any drug (we are in Canada and so yervoy is not registered yet.)

I know there are many people in similar situations - I am thinking of all of you.  

 

TErra

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