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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Kellie-T's picture
Replies 2
Last reply 8/9/2012 - 7:14pm
Replies by: lhaley, Dgentz

Just heading home from Moffitt. Six months on Zelboraf and still NED. My hair that was thinning is coming back curly. Side effects are really stable now. Living life and loving it! Keep fighting!

Life is not by accident. Make every minute count.

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Laurie from maine's picture
Replies 12
Last reply 8/9/2012 - 6:45pm
Replies by: Gene_S, Anonymous, TSchulz, Laurie from maine, NYKaren, Phil S

Hi,

I am in a limbo phase at moment while I wait for a zapped brain met to "calm down".  I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested. 

His suggestions are IL-2 or TIL. (I am leanings towards IL but I was told if scans show brain involvement on next scans IL will not be an option as it doesnt cross brain barrier)   Doctor  and I will continue to look at PD-1 trials but he is pesssimistic that I would get a seat as there are few trial and brain involvement moves you down the list he thought, but I still will look/hope and apply.  BUT meanwhile have to have another game plan as back up.

I was told it would be very hard to push for a reinduction of IPPI for me as i was a mixed responder with partial growth or some shrinkage in most tumors but real growth in my shoulder tumor.  I was a partial responder (story of my life with melanoma it seems) with BRAF and grew 3 very agressive tumors in my intestines so BRAF scares me as a choice to go back to.  I am going to research BRAF MEK combo but I believe my doctor does not think I qualify for that one? not sure why.

I have just found a new small tumor on my other shoulder and this one is painful - that is new for me most of mine are not painful, it makes me scared that cancer is starting to ramp up on me.  

I would appreciate any thoughts or input from people as I sit in limbo I can do research and come in armed with my own thoughts on plan after I hear my scans results.  I am currently getting radiation on my shoulder to cut it down a little as it is a very large tumor.

 

you are all in my thoughts and prayers-thank you

laurie from maine

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Dgentz's picture
Replies 3
Last reply 8/9/2012 - 4:39pm

Not sure when I last updated, but my IL-2 was not very successful, so on 7/9/12 I started Zelboraf. Dr. Started me on 4 pills a day, increased to 6. Now moving slowly toward the full 8 (adding 4th at night for 5 days then to morning dose). Got BAD sunburn - apparently shade is not safe enough! ;)

Joint pain has been my worst side effect though. Has anyone tried any supplements like Osteo Biflex (glucosamine)?? Advil doesn't seem to be doing much lately.

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sandywebb's picture
Replies 4
Last reply 8/9/2012 - 4:22pm
Replies by: Snickers60, Janner, sandywebb, Anonymous

Well, had my 5yr. scans and I had been NED this whole time. Got results yesterday and they are showing "A slightly irregular noncalcified nodular opacity has developed in the left upper lobe measuring up to 5mm in diameter. The differential diagnosis includes metastatic disease, primary lung neoplasm, or an unusual small focus of rounded pneumonia."  My doc has me scheduled for 3 month re-check scan to check the progress of the nodule to see if there is any change. Needless to say I'm pretty much a basket case right now. Any thoughts on this??

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rrrule32's picture
Replies 4
Last reply 8/9/2012 - 3:42pm

Hello All,

My fiance, Kaitlyn, is 23 years old and has Stage 4 melanoma.  It has moved to her brain.  She starts radiation tomorrow.  They are doing a type of focused radiation, I don't think it's SRS or Gamma Knife or Cyber Knife, but they have this new machine that, as it's giving her whole brain radiation, when it gets to her brain mets, it will stop and dosage will increase.

I'm wondering, people in Kaitlyn's situation, do you have any advice for treatments?  Anything that worked for you?  I'm trying to get our oncologist to give her her last dose of Yervoy.  She had her first 3 doses, and they started working on her body.  Have any of you ever heard of Mannitol?  It's a natural compound that opens up the arteries to the brain and also shrinks the endothelial cells that block foreign agents to the brain.  I'm thinking if Kait were to take Mannitol before receiving any kind of treatment, it would be able to reach the brain.  Anyone else heard of this?  Her oncologist right now doesn't want to give her her last dose of Yervoy because he thinks it could counteract with the radiation.

Anyone ever heard of Hemp Oil from the famous Rick Simpson?  Not hemp seed oil, but hemp oil.

Any advice?  It would be appreciated.

Thank you,

Travis

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2012 - 1:44pm
Replies by: Janner

I had a question about PET scans.  I had a very large skin tag (which all my doctors have said looks fine, hasn't changed in years, etc).  I did have a PET scan right after being diagnosed with Melanoma.  If it were Melanoma - it would have shown up in a PET scan right?  Even though it's on the surface of the skin?  Not sure how that works sometimes.  

I know my original surgical onc asked if I wanted it removed and I said to just leave it but I think when I see my derm in a week or so I'm going to just get it removed.  It seems to be a bit irritated lately (I think between the heat and humidity and Zelboraf).  Oh the joys of melanoma!

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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NYKaren's picture
Replies 9
Last reply 8/9/2012 - 11:53am

On the positive side, my adrenals seem to be functioning, so I'm off hydrocort.  Just to make sure, I'm going for a stimulation test beginning of Sept., sooner if I don't feel well.  Also, after second infusion of Remicade, my colitis completely disappeared.  As I've said, it's like a miricle drug.

On the other hand, none of my treatments  have stopped the progression.  Radiation results were temporary--side effects are permanent. (bald spot, lack of saliva, can't open mouth wide, etc)  i wouldn't even give them a second thought if it had helped, but, as soon as the radiation was stopped, the mets were on the march again.

Yervoy #1 I got through with minimal side effects--was kept on Budesonide for diarhhea and dealt with fairly severe rash but alas, didn't stop the mel.

Got through every single bag of IL-2 like a champ, was doing so well after second round, I went back for a third.  Guess what--no lasting remission.

Yervoy #2 caused colitis and colitis treatment caused adrenal insufficiency.  Yervoy was March/April, finally back on my feet.

Continual freezing of mets/applying Aldera is of minimal help, some mets do disappear, but others keep spreading.  The met in my ear is getting closer to the drum.  Seeing surgeon at Sloan who has ear experience on 8/28.  (oh the joys of trying to get doctor appt's in August--two docs tried getting me in sooner!)

I have not been eligible for PD-1 trials when there were seats...usually no measurable disease on NON-IRRADIATED skin.  NOW, I'm on my fourth treatment, so that disqualifies me from Merck, and Remicade disqualified me from BMS.

My fourth and latest treatment is Temodar.  If Temodar does nothing, Dr. Wolchok will ramp up to combo chemo.  He told me that there will be other drug companies developing Anti PD-1 drugs, and his hope is to keep me stable until another trial becomes available.  Of course I am BRAF and C-Kit negative.  I am feeling small nodule on my collar bone, will ask surgeon to do a needle-biopsy. 

Dr. W. was thinking down the road about TIL, so he tested my blood, and of course, I don't have the right (something or other) that NIH would want, so another dead end.

I do think that all these treatments might have slowed things down, the glass cannot be half empty, but must remain half-full.

That's my update.  Take care everyone; you're all in my thoughts.

Karen

Don't Stop Believing

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The American Cancer Society is out with its annual report, showing how states are doing in the fight to prevent cancer. The study measured states on seven issues. For the first time, the study ranked states on laws regulating tanning salons. Nationwide, the report finds nearly two thirds of states falling short in the battle against cancer. Only two states, Delaware and Vermont, get high marks.

Read the report: http://cbschicago.files.wordpress.com/2012/08/hdymu-2012-final.pdf 

 

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Lori C's picture
Replies 4
Last reply 8/9/2012 - 7:12am
Replies by: Lori C, lhaley, Jeff's Mom

I wanted to check in and say that I still read the boards and am keeping all of you in my thoughts.  I have not seen any posts from Charlie in a long time and if you are out there, Charlie, I hope you are doing great.   Am praying for HimynameisKevin and all others who are having struggles with this illness.

I have been trying to keep up with melanoma treatment news because I am doing some writing (for school - I'm in DePaul in Chicago) on the US clinical trial system.  If anyone would like to discuss their experiences with the system of locating and participating in clinical trials with me, please email me!  Brennan07@aol.com

I am also writing about Will.  A week ago, I testified in front of the Illinois General Assembly hearing on abuse and neglect of people with disabilities to tell Will's story.  I have written about it on a blog I created for him.  His melanoma fight is a big part of it, and thought some of you might be interested.  Will was an amazing warrior in all his battles.  I miss him constantly.  The blog is JusticeForWill.wordpress.com

Lori

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Shelby - MRF's picture
Replies 6
Last reply 8/9/2012 - 5:58am
Replies by: Anonymous, Lori C, Ranisa

Avvo will donate $5 to the MRF for every doctor review they receive in the month of May.  Pleae use this link to be directed to Avvo's webpage designed specifically for skin cancer awareness and the MRF:  http://www.avvo.com/support/skincancer 

Pass this along to your friends!  Thanks!Ple

Shelby - MRF

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kay5291's picture
Replies 8
Last reply 8/8/2012 - 11:30pm
Replies by: Roxy1453, kay5291, AngelaM, LynnLuc, mcanova, aldakota22, Anonymous

Hello All-

I have been lurking for a week and I have gone back and forth about posting because I don't have any test results yet.  But you all seem so kind and calming, and I guess I could use some of that right now.

So a year ago I had a baby.  Late in my pregnancy I noticed a small spot on my upper leg/buttock area.  It looked like a small hemangioma, which run in my family, and my skin always changes when I am pregnant from the hormones.  Most of the changes go away or resolve after I stop breastfeeding, bu this one didn't.  It grew to the size of a small pencil eraser, and got dark.  I figured it was a blood blister.  I really didn't think anything of it.  But it never went away.  A couple of weeks ago I brought it up to my husband and he agreed that it would probably be best to get it looked at.  I made the appt with my pcp.  I have a very good relationship with my doctor, but as soon as she got a look at this thing her whole demeanor changed.  And I guess that's when I got scared.  She set up an appt for me with a surgeon, saying that she wanted to make sure that an expert cut it off because of margins, etc.  I had a consult with the surgeon first, and he said, "I don't like it.  That needs to come off ASAP."  I told him we were going on vacation next week and he said he didn't even want to wait until after that.  He set up the excision for the following weekday.  While he was cutting it off, he said two things that have me very uneasy.  First he said to his nurse, I've going to revise this some before I stitch up."  To me he said, well I've got to take off a bit more than I told you.  Then several minutes later he said, "Ok I'm going to stop.  I can't chase this anymore."  When I asked what that meant I was not answered, and the subject was changed.  I was given short or no answers at all for every question I asked, in fact.

Today is Wednesday, and the nurse said she would probably have results Friday or  Monday.  It's like torture.  I don't want the call but I want the call now.  It's difficult because no one will talk to me about it.  My husband says don't borrow trouble, which I understand but just makes me feel lonely.  Doctors wont answer any questions until they have to.  My mother dissolves into tears at the mere mention of the subject.  Ugh.

So I guess I just wanted to know if anyone has any idea what the surgeon could have meant with those two statements.  Cause I knwo what it SOUNDS like to me. Also I guess I needed an outlet to get some feelings out.  I think it kind of sucks that the one going through it is forced to be the "strong" one for everyone else and hold it all together, but that seems to be my situation.

If you're still reading, thank you.  As fatalistic as this probably sounds, I am hoping and praying for good news.

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Jydnew's picture
Replies 7
Last reply 8/8/2012 - 7:42pm
Replies by: Gene_S, Jydnew, DebbieH, akls, Anonymous

Hi all,

My husband has been NED for 10.5 years - IIIA at diagnosis in Jan 2002.  This is the first year he won't be getting a scan.  He will get the usual bloodwork and oncology appointment.  What is that worth?  Everything I've said seems to say that bloodwork is only indicative of a recurrance when the cancer is very far gone, and that the patient is the most reliable person to catch a recurrence through symptoms.  He's going to get bloodwork twice a year and a chest x-ray once a year (in winter) from this point forward.

I read that conditional survival puts his chances of continuing NED at the same rate as someone who was diagnosed at stage I.

Wishing many years of NED to everyone here...

Wendy

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awillett1991's picture
Replies 4
Last reply 8/8/2012 - 5:35pm

I'm a little over 3 mos on Zel, it's working, and finally I am feeling like I'm past the worst of the side effects. I was diag in Jan with a cardiac tumor, and June scans show it is shrinking. Hopefully nothing else will crop up - next scans in 3 wks.

Today I asked my doc about stopping Zel and switching to Yervoy. My thinking is that my tumor burden is low, and maybe Yervoy will work better now rather than later. I would have Zel in my back pocket if needed, assuming it doesnt fail me before then. I am not a good trial or IL2 candidate bc of my cardiac involvement, so my future options are pretty limited. My Mel has been a slow growing kind so far.

I'd appreciate any ideas or thoughts you might have - my doc is mulling it over. Just trying to make the most of my options. Where is a crystal ball when you really need one?

Thanks!

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Theresa123's picture
Replies 1
Last reply 8/8/2012 - 4:32pm
Replies by: louwpb

Hi,  I found out I have this gene in my melanoma tumors.  I am trying to find out information.  Is this gene inherited?  I have a daughter and I hope I didn't give it to her.  I am being evaluated for Zelboraf.

thanks,

Terri

Stage 4

Every day is a miracle.

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Mymlan's picture
Replies 8
Last reply 8/8/2012 - 10:36am
Replies by: Mymlan, Anonymous, Janner, Gene_S

Hi all, 

I had a wide re-excision for a thin melanoma of the Left posterior ear 3 weeks ago. It was grafted and is healing well. The melanoma was removed by a Dermatologist on June 6th. Pathology report states Clarks Level II, Breslow .25 mm, no ulceration, extensive regression, mitotic figures not applicable (small dermal component), epitheliod cytology, no identified melonacytic nevus, non-brisk tumor-infiltrating lymphocytes, no perineural/vascular invasion identified. 

Also, found a strange-looking mole in my scalp on the Right side of my head, did a 2 MM Punch Biopsy, which came back Friday as precancerous, according to the Oncologist. Now I am being sent to the MD Anderson Melanoma Center where they want to do a full body scan to check all of my moles. 

About 2 weeks ago, I noticed several small, new pigmented areas on the backside of my left ear, they are all in a row up and down my ear. Two are pretty big and kindof a rectangular shape. They are getting darker as time goes by. They don't feel "bumpy" but they do have a slight rough surface. What are the chances of this being more Melanoma..?

I noticed a few more similar spots under my left armpit last night. One big and two small, they are very faint but they are there. Has anyone else had a similar experience..?

Thanks.

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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