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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King's picture
Replies 2
Last reply 9/18/2010 - 7:07am
Replies by: Rocklove, JuleFL

I know Sharon in Reno has been in my thoughts and prayers since her post on the 10th.  I hope that Hospice is doing their job and that Sharon is comfortable and at peace.  Also, thinking about her family and friends.

 

Stay Strong
King

Stage IV 7/05 LIver mets

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Nebr78's picture
Replies 2
Last reply 9/17/2010 - 10:45pm
Replies by: bcforce, Anonymous

Is there anyone who has serious heart disease and have taken this   Ipilimumab?  Termodar did no good.  I took something before Termodar and it caused a lot of chest pain.  Dr. don't know what to give me.  I can't get into a C. Trial.  Probably too old.   Male 78  Maybe my Melanoma 4 is not bad enough.  I have lump in front of ear, under skin 1" diameter.   One on lymph node near arm pit and spot in lung and spine.  All were growing some last ct scan.

I will not change doctors. This is the 2nd one and cancer treatment seems to be a guessing game anyway.  What are some of the costs of this Ipil?  Conservatine me will not spend what we have chasing all around for a cure.    From Nebraska

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JoanR's picture
Replies 4
Last reply 9/17/2010 - 10:25pm
Replies by: bcl, Donna

I am a small part of the Victoria group who is advocating for a ban from tanning salons for 18 and under. We don't want parental consent, just an outright ban, which could be effectively enforced.  It came to light at last night's hearing when a tanning salon operator says she has her 9 year old pre-tan before winter holidays..when we have uninformed and irresponsible parents such as her, we need an outright ban. The opposite side indicted there are no States that have a ban, is this correct? bcl has done a fantastic job with it, and Julie, Mom of Ceri, shows her video..very powerful. If there are any Ozzies on line, what are some of your restrictions, I know your country is ahead of the game. Thanks for the help . J

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New to this bulletin board. Anyone else out there with 100+ mets in their leg on a Braf trial? This is my third trial. Already went through a MART-1 gene therapy/vaccine/IL2 and 4 rounds of ipi. Would love to hear some feedback - positive or not so positive.

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ValinMtl's picture
Replies 6
Last reply 9/17/2010 - 1:28pm

Long day at the Royal Vic in Montreal.  Out of the house at 5:30 - we're out in the country, blood work at 8 am, meeting with doctor and then the BIG WAIT!  Booked for 11 am but drug was ready only at noon, then unfortunately no beds available in the motel (5-bed room rather than the room with chairs) until 2:30 pm, 1 1/2 treatment then 1 hour...Finally left at 5:30 pm....but who's complaining.  I have had my first round of ipi.....YAHOO!  It went very well no side effects there.  Had a headache this morning, but very strange..my leg with the 100 plus little monsters had a very tingly feeling all night.  I like to think it's ipi doing it's work!!! 

Met up with Sharyn and we had hoped to have coffee together with our hubbies Jim and Bill.  Alas, the hospital kept us both busy running around so we never got the chance, only touched base briefly.  Sharyn starts her treatment next Thursday - we're finally where we want to be!!   Val

Live Laugh Love Nothing is worth more than this day!

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bcl's picture
Replies 9
Last reply 9/17/2010 - 1:23pm

Hello MPIPers, a few of us in Victoria Canada are doing everything we can to pass a tanning bylaw that would ban under 18 year olds. We are at the public hearing stage and Steve Gilroy is telling us we need only parental consent and a ban of skin type ones. I have issues with this, one of which being I took the online skin test; answered the questions as my younger self and was informed  I could tan sensibly.  I'm sure most teens, fair or not,  would be inclined to get the same response.

I also think not only fair skinned folks get melanoma but am unsure of my facts.

So if anyone feels they can help me I would really appreciate hearing from you!

 

 

(And for anyone who wants to make a submission to the hearings before sept 30 here is the link  http://www.crd.bc.ca/_contact/?r=768 

 

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Sherron's picture
Replies 7
Last reply 9/17/2010 - 12:02pm

Hi everyone,

Jim is having lots of stomach problems, and of course, as of yet, has not agreed to go to the doctor.  He is in pain, having bowel issues, and mainly very uncomfortable.  He is not eating much.  He looks pale.  He, of course, tells me he must have some kind of virus.  I don't think so.  He now a lymph node swollen on the left side in front of his ear.  Another  3 lumps on the left side of his back.  1 on his left side.   And the right side, originial Mel, that lymph node is huge.  He has one on the right side of back...and lump in right side of chest.  None of these are giving him any problems. HELP, PLEASE.

Does anyone have any experience with this?  Thanking you in advance for any responses to this. 

Take Care,

Sherron, wife to Jim

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dian in spokane's picture
Replies 10
Last reply 9/17/2010 - 10:03am

I am back in California where I visited the HOAG yesterday for my 5th vaccine shot. Only 3 more to go!

I had worse side effects this time than any other, and was glad to have bob here with me, AND that I had a hotel room last night and was not sitting on an airplane. My pretreatment (tylenol and codeine) did nothing to stop my headache, and by evening I ached all over..even the joints in my fingers and toes hurt, and I was sick to my stomach, so skipped dinner altogether and climbed into bed with the shivers..even though it was a LOVELY evening here.

But, as usual, I felt much better this morning and I'm up for a nice vacation day at the beach with my sweetheart. Getting ready right now to walk down to the pier to find some lunch spot.

I have PET/CT scheduled for Monday, so we'll see then if I am still NED. It will be my first scan since I started the vaccine. I'll get the results on friday.

That's it for my update!

dian

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mwatts's picture
Replies 3
Last reply 9/17/2010 - 9:57am
Replies by: dian in spokane, mwatts

Hi! I recently had a .3 melenoma removed with margins coming back clear after second time. I was given no further treatment after and just told to go back every 3 months. I am still scared to death it has spread. I have a long history of abnormal moles and still very young. Did anyone else get a PET scan with stage 1 or 2 or even a mole my size? Is this something I should push for? Any opinions would be appreciated =)

Faith is being sure of what we hope for and certain of what we do not see.

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Jim in Denver's picture
Replies 4
Last reply 9/17/2010 - 9:02am
Replies by: Sharyn, ValinMtl, King, molly

Hi All,

Had scans at MDA on Monday this week @ 6 weeks into the Trial.  6 lung mets showed aggregate growth of 13% - well within the 25% growth allowed to stay on the Trial.  Dr. Hwu said that it is common to see some inflammation in response to Ipi, and it is impossible to differentiate between progression and inflammation.  No new mets - also required to stay on this Trial - so the scans we good for me.  Had 3rd Ipi infusion on Tuesday.  Flew in to Houston Monday and back home Tuesday.  I feel very good and am able to do everything I was able to do before starting the Trial, so no complaints.

The Study Nurse went though her list of side effects again.  Seems like diarrhea has been the most common issue in this trial (from Ipi).  Dr. Hwu told me up front that Temodar often produces constipation, so that it tends to counteract the diarrhea from Ipi, and it certainly has for me.  I am actually mildly constipated from the Temodar while I am taking it (4 days, 400 mg each day), but nothing uncomfortable.  My other side effects have been itching (face, neck, and chest), occasional rash (from sun exposure and/or sunscreen), and occasional mild headaches (mainly from Temodar).  I have also developed a small patch of white skin (Vitiligo) on my chest, which is not uncommon.  Other side effects the nurse asked about:  nausea, fatigue, trouble focusing, mouth sores, tingling or loss of feeling in extremities (neuropathy).  I told her I do actually find that I do seem to have more trouble focusing and feel a bit spacy early on in the cycle, but that maybe it just a symptom of age :)

So that is my update.  The 12 week scans should be more telling regarding responsiveness, although Dr. Hwu reiterated that delayed response to Ipi is common.  Responses beyond 12 weeks are not unusual, but are usually apparent by 24 weeks.  Individual range and timing of responses show considerable variation, as many of you have read/heard before.  This does probably not add much to our collective knowledge about Ipi on this board, but I thought I should post how things are going for me in addition to my occasional post to my friends here on MPIP.

Last, but certainly not least,  I hope to go see Jerry Ellis in rehab in Colorado Springs next week.  All of us can draw inspiration, strength, and willingness to help others from Jerry's example.  He is one of a good number of remarkable people I have been fortunate to get to know on this board as each of us go forward on our journeys.  Like many of you, he had offered others here great support and a wealth of information, along with a wonderful sense of humor.  May we all follow his example!  Thank you all so very much for your ongoing support - it means very much to me.

Many Thanks,

Jim

 

 

 

 

 

 

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makedoandmend's picture
Replies 5
Last reply 9/16/2010 - 9:15pm

Does anyone have any experience about LIJ they can share with me? The oncologist/melanoma specialist I am working with is from LIJ and thats where I am having surgery as well. I tried Sloan Kettering  but they wouldn't take my insurance. I searched the forum and found one really positive post but just wanted to see if anyone else has had recent experience with them. thanks!

-pat LI

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LampChop's picture
Replies 6
Last reply 9/16/2010 - 7:36pm

I am newly diagnosed with two excisions and a sentinal lymph node biopsy.  I am Stage III B because of microsatellites.  I have had three opinions on treatments.  One said "vigilant observation" and two others said radiation therapy.  However, one said external beam radiation - 4 weeks / 5 times a week.  And the other said IMRT (aka 3D conformal) radiation which avoids bones and provides less radiation to healthy cells.  It also is a five day treatment.

I'd like to do the IMRT therapy, but have not found any other online resources talking about it with Stage III melanoma to an extremity (mine is on my arm).  I'm just reaching out blindly to anyone on this board to see if anyone has experience with it or if the cancer center I went to is just very proactive in it''s use.

Thank you to anyone who responds.

- Kristin

(PS - my screen name is supposed to be LambChop, but I guess I am tired and just not focused these days.)

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Lori C's picture
Replies 3
Last reply 9/16/2010 - 7:20pm
Replies by: Charlie S, emilypen, Sherron

Because Will has been having  nausea and some vomiting, his oncologist wants a brain scan.  So far, he has no other symptons.  The vomiting is accompanied by a fair bit of nausea, and is usually later in the day. 

Naturally, I'm terrified : ( 

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emilypen's picture
Replies 6
Last reply 9/16/2010 - 11:28am

Hi all,

So met with the oncologist today and the new CT scan shows very minimal growth on the one tumour they haven't radiated. It's the one they're leaving as is in order to guage how the trial drugs work. Is that normal? Do tumours just slow down sometimes? The radiated areas show scarring but no new cancer anywhere. PET scan results later this week.

All the tests are done, and my husband starts the trial on Wednesday. http://clinicaltrials.gov/ct2/show/NCT01155453

Has to spend the 24 hours in the hospital in order to make sure he has no bad reactions to the drug and they'll take his blood every hour to check for dispersion rates.

Our fingers are crossed. I'll keep you posted.

 

Em

 

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 9/16/2010 - 1:08am

I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out  about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa. I would just like to hear someone has found something to slow this stuff down or reversed it  to ned.Thanks in advance for taking the time to respond.

It's agood life if you don't weaken--- borrowed from a friend

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