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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paleskinisin's picture
Replies 9
Last reply 9/21/2010 - 12:50pm

I'm wondering if there are any AZ patients on here that are later stage.  I'm stage IV and looking at treatment options.  I've been battling for 4 years and feel as though I do have a good team of docs, but I'm looking for second opinions for treatment and just wondering where the AZ folks go for treatment.

Anyone been through treatment here in AZ?  Anyone have a good team of docs to recommend?  Anyone been to Cancer Centers of America that just opened in AZ?

Thanks,

Tina

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lovingwifedeb's picture
Replies 6
Last reply 9/21/2010 - 12:15am

September 19, 2010

   

My husband and I took to heart the recommendation to find an oncologist in our area who specialized in melanoma and was willing to “jump into the boat with him” so to speak. Well, it ended up being the very same doctor that wanted my husband to join his melanoma cancer vaccine trial and broke to him the news about percentages and so on… Portland is not that big.

 

My husband had to admit to this doctor that he had him on the floor by the time he left his office on that first visit but admitted he has learned a lot since then and that he had lots of questions to ask him now that the shock was over. This doctor was very willing to work with my husband and answered all his questions.

 

My husband, Bob is stage 3c, if you remember and had only 3 choices of treatment after his surgery. The metastatic tumor that was located in his leg/groin was rather large, almost 3 inches in length. Although the primary melanoma was never found, one theory of the doctor’s is that my husband’s immune system destroyed it, another theory is that the primary was located in the tumor itself. No proof, no one knows for sure. So, for now some of the cancer cells “could” have escaped from the metastatic tumor in his leg/groin (or not) and until those cells get large enough to be picked up on a scan we will not know if he ever moves into stage 4, which I hope never happens. But if it does… then other therapies would then apply. For now his treatment choices are

1.     Interferon

2.     Cancer Vaccine Trial / 2 people get the drug – 1 person gets a placebo

3.     Do Nothing, Watch and Wait

 

I know my husband well enough to know that his decision was not made lightly. Most important decisions we have made together take great discussion or angst over. Both of us are alike in this so I know the process was difficult for him but I also know it was about quality. It was a difficult choice and a personal choice and it was strictly his choice. My husband has decided to watch and wait. He feels that this choice was necessary to protect his immune system as it stands today. He thinks if his body’s immune system destroyed the primary and the doctors couldn’t find it then this decision has to work in his favor for now. He does not believe in destroying his own immune system to the point that it has to be built back up again. This oncologist will keep a close eye on my husband with regular scans, exams and blood work, every 3 months, then every 6 months then once a year. I have also asked my husband to find a doctor/naturopath to guide him into stronger nutrient care. Anything that would help build up his immune system even more and bring greater strength and better health. Maybe between the two doctors and Bob’s determination we can turn this around for a longer period of time. I am here as his caretaker, his wife, the protector of his heart, and in whatever way I can support him.

This will be my last post in this group for now unless our situation changes (which I hope it doesn’t). Thank you for your support and your suggestions along the way. I have learned a great deal from those of you who have responded to me personally and to my postings. I have joined another group that might better fit my needs as caretaker and writer. As I believe I will be always living with the “Monster Under the Bed” I will be continuing to write about my fears and emotions. If you would still like to follow me please use the links below.

 

I have encouraged my husband to write about his own fears and to begin to post them to the MRF site and ask his own questions directly to you as I’m sure he would like to know if anyone out there has suggestions other than chemical. Look for him soon he will post under the name "The Gambler".

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

 

If you would like to follow our family blog page please go here:

http://redesign08.blogspot.com/

 

 

If you would like to follow me in the  “Caregivers” section, the Cancer Survivors Network / the American Cancer Society website please follow this link:

http://csn.cancer.org/forum/138

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ipi in DC's picture
Replies 4
Last reply 9/20/2010 - 9:20pm
Replies by: ValinMtl, Anonymous, Jim in Denver

Hey everybody,

Just wanted to update you on trial, 6 weeks in, 2 ipi infusions and Temador doses prior to this trip.

First for those who know my old handle, I changed it to ipi in DC instead of Mel in DC hope to one day soon change it to Mel out of DC.

We went to MD last Wednesday had CT & MRI on Thursday and then visited with Dr Bedikian on Friday. They were happy with the results so we could stay on the trial :) I have a subcutanous nodule on my lower back that shrunk from 12mm to 9mm and the nodules in the lungs did increase a little in size but it was half the growth than the previous six weeks growth prior to starting the trial.

Since the latest Ipi infusion and taking the Temador the nodule on my back has shrunk further and is almost hard to find. I contribute that to the Temador it did shrink the first dose also but regained its size a week later, but the second dose it shrunk and stayed smaller. So hopefully the Temador will breakup the nodules and make it easier for the Ipi modified T cells to come in and finish the job to totally destroy the remaining cells, which is how they discribed they were hoping this combo work. 

The side effects I am having to date is light constipation just while taking the Temador and nausea meds. Feel nasty for the last day of Temador and two days following (fells like the body has poison flowing through everywhere, which it is) then feel great until next dose. Light on and off headache during fisrts week after infusion. Skin rash I beleive from the Ipi on lower back, armppits, pelvic area at belt line. top of feet. The rash seems to like the hairy areas that hold sweat and heat. And rash type bumps spread out on forearms. Have a constant walking itch over entire body which I think is from the chemo (stops the body and cancer cells from dividing) drying out the skin, starts to get better just before next dose.

My bloodwork has stayed "perfect" on all counts according to Sandy  the research nurse (she was very suprised), which is great, I am less susceptable to infection.

Thats about it, please feel free to ask any questions or thoughts,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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himynameiskevin's picture
Replies 16
Last reply 9/19/2010 - 10:32am

Good thoughts, prayers, stories and vibes would be greatly appreciated this week. I hear the second week is worse by far. But I'm ready, I kind of know what to expect as far as the hospital, treatment and side effects go. So hoping to use that to my advantage. Also, my mom flew in last week and she'll be here to keep me company until Wednesday, and a mothers love is, well, to me, is pure and unabashed, and it's great to have her here. I hope all is going well for everyone. Let's keep our heads up. Keep learning and progressing towards positive outcomes. One day at a time. I'll talk to you all soon. -Kevin

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Lori C's picture
Replies 6
Last reply 9/19/2010 - 5:22am
Replies by: Janet2, James from Sydney, Lori C, Anonymous, Jackie W, jag

Will is doing okay - going for 4th chemo next week.  All visible lesions very small, flat, etc.  However, he is SO tired.    He's on cisplatin and taxol.  Is this pretty normal?  Pain is much better.  But I'm worried - of course.  He's just so worn out.

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Replies by: Anonymous, Janner, washoegal, Brandi, dcarter

I was dianosed with melanoma on August 23 and had surgery to remove the surrounding tissue the next day.  The test came back clear on this mole.  It seems strange to me that treatment can stop here.  How do I know that there are not other moles that are melanoma?  Should I be pushing for other tests or does this seem normal to just remove the tissue and be done.  No blood test, nothing?  I am happy that they are saying my treatment is done but concerned after reading all the post on this site where there were other spots undetected.  Or that it had spead to other areas.

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amybusby's picture
Replies 20
Last reply 9/18/2010 - 7:29pm

A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

It's been a long time since I last had the GSK BRAF inhibitor (end of May), so we've been expecting at some point  that the effects would wear off.  I've had some growth in the subq system, and the lymph nodes, but the main problem is the growth of bone mets.  I think all were there previously but now are growing & compromising the bones more.  I have a pretty substantial right femer met that's come on strong recently in terms of pain, so I knew something was wrong there.  It's going to need immediate attention.  So the plan is to try for the next few days to get my hands on some BRAF inhib. drug somehow.  I am open to all suggestions, companies, trials, compassionate use plans, inside information, etc.

Assuming we can't do that (a fairly likely assumption) Dr. Papa recommends radiation for the femer & a couple of spinal mets.  The spinal ones aren't hurting yet but as long as we're there....  (radiation would go along again with another round of radiation).

I'm going on Thursday for an infusion of Zometa - anyone done that?  Anything I should watch out for?  (to try to build bone density)

So it's discouraging of course.  It torments Dennis to know there is something out there is practically assured of controlling my systemic disease now that we have the CNS disease stable.  My quick and almost complete response should make me a terrific candidate for other cohorts of the BRAF trials that allow CNS disease, or for compassionate use - you'd think.  But then again we all know rational, reasonable thought processes have zero to do with FDA procedures and / or drug manufacturer business decisions.

So right now I am focusing on staying off my leg and making sure there are no bone breaks im future.  We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun.  But I have agreed to do my best. 

Love,

Amy

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My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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MACK under the knife's picture
Replies 8
Last reply 9/18/2010 - 10:51am

Went to the doctor with what I thought was swollen glands and now I have Melanoma and awaiting for them to get me into MD Anderson to get it removed. I don't have the stage but the PET scan says that it has remained in my neck. Anybody got a clue what I am facing the doctor seems to have abandoned me. It is very stressful

 

Mack under the Knife

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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Vermont_Donna's picture
Replies 7
Last reply 9/18/2010 - 8:34am

Hi,

My PET/CT scans of a week ago lit up everywhere in my leg (the leg where melanoma has been found over the last 4 years). I was three weeks out of radiation when the scans were done.....so too soon they said....(although I didnt make the appt, and it had been 4 months since a oncology checkup)....but now I'll know for next time! My oncologist said he has sent my tumor off to be analyzed more in case other treatments are needed, but he wants to wait another 6 to 8 weeks before scanning again. If I notice anything new pop up then I will call right away. I have read all the posts about BRAF and C KIT etc but I have had a hard time absorbing the information as I havent had to think about other treatment options for me up until, possibly now......so not to be coming off sounding stupid or not taking an active enough role in my melanoma cancer care, would people be so kind as to tell me, when he says he is sending the tumor off to be analyzed, what is he looking for and what treatments might that lead too? If needed, as I said after my next scans. There are so many drugs and options and trials etc that are discussed here I do feel a bit overwhelmed with even where to start my own research.

Thanks so much.

 

Vermont_Donna, stage 3a, post 11 months interferon, post 7 months Gm CSF (leukine), post ILP a year ago, and post TWO different rounds of radiation (basically now my whole leg has been radiated, from ankle to groin)

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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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