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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nickmac56's picture
Replies 6
Last reply 7/9/2011 - 2:17pm

We are down to very few options for my wife (Stage V, brain involvement, lung and skin mets, internal organ mets likely) and this seems a pretty low impact, not much downside option. Because of her recent brain surgery and seizures and the fact she is on so many anti-seizure meds and steroids the onc is adamantly opposed for the time being to put her on IL-2 - too toxic. All the places I've contacted about clinical trials - especially the ones doing TIL for HLA-2 mutation - have said no thanks due to her seizure history, don't want to screw up their trial results I suppose. 

I'm curious for those who have tried Temodar if there has been any hair loss? It seems a low occurrence side effect - but she is already not happy about the hair loss from her Cyberknife treatment, even though she looks great in her wig, you woudn't even know.

From what I've read about chemo treatments it appears if it has an impact, the usual pattern is some reduction in tumors for a period of time, then continued progression - so you are just buying some time at a not bad reduction in quality of life - so a pretty good trade off. I haven't found much about long term durable remissions with chemo or Temodar specifically. Any evidence out there I am unaware of about long term success? She isn't doing any combo treatment yet involving multiple drugs or chemo/immuno drugs - again related to toxicity and her particlar situation with the drugs she is on and seizure history. 

 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Laurie from maine's picture
Replies 6
Last reply 7/8/2011 - 3:29pm

Hi,

I am heading down today to get more info from Mass General. Last night I ended up in emergency room in maine with severe stomach pains and vomiting.  CT showed mass in my liver, no other info given except handed pain and nauseau meds and told to go down to MA to see my oncologist.  I will write when I know more, hopefully only contained in liver.  Hoping to pick everyones brains here once I have full info.  I did little search and saw King had liver mass removed and did well. 

ugh - laurie from maine

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Nebr78's picture
Replies 6
Last reply 8/1/2011 - 8:52am

I finished my radiation treatments then Dr. gave me a chemo with 2 medicines and I don't know what all.  Anyway about 2 days later I was the sickest individual without dieing which I wanted to do. Any way this went on for 10 days and am still not well.  Went to an Oncologist yesterday and he made it quite clear.   Since I want no more chemo, he suggested I look into Hospice plans.  That  I am doing.   I am still not quite convinced it is the Melanoma on the spine that is doing it. Radiation must not have stopped it.   I am going to ask if I could take another CT scan just so  I can see.  Last one was nearly a month ago.   But the Dr. I talked to seems to think it is all over the body . I am taking a lot of pain medication for pain in right hip.   Guess that could be coming from the spine.

Having heart disease for over 40 years, and melanoma for about 5 years, enough is enough.  I am 79 and have had a good life.   Retired for 17 yrs. and that is not bad.  Except that someday I would like to go  all day without  pain.

I don't much about Hospice Care but will find out the next few days.    Thanks to all

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MariaH's picture
Replies 11
Last reply 7/14/2011 - 8:40pm

So, we met the thoracic surgeon today, and we were told that Dave's cancer has spread and he is now Stage IV.  They told us to wait up to 72 hours to schedule an appointment with the Medical Onc to discuss options, which I told them we would not - I have already called the Univ of Pitt Medical Center (Dr Kirkwood and Associates) who called me within 24 hours (including an email from Kirkwood himself) and who also have an open trial with IPI and GM-CSF.  Amazingly, we received a phone call 5 minutes after leaving saying we had an appointment on Tuesday at 12.30 (can anybody say squeaky wheel?).  Since Roswell has one of the largest IL-2 clinics, I know that this is the route they will suggest.  We are also looking into having his original tumor tested for B-RAF mutation - does anybody know how long this takes?  Also, is there any other treatment others on the board have had that have shown prolonged OS?  He has multiple enlarged matted lymph nodes in his upper partracheal and upper mediastinal areas, non-resectable.  All other scans are clear, and at this time this is the only area of metastases.

ANY input or thoughts on which way to go would be greatly appreciated!!

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Last November, a lump on my neck turned out to be a melanoma of unknown primary.  Left posterior neck lymphadenectomy removed another 36 nodes, all clear.  Subsequent tests revealed one possibly problematic spot in the same sector (left posterior neck), but it appeared not to be growing.

After six months of tests (MRIs, PET=CTs, and contrast CATs) revealing that the site was suspicious but not growing, my ONC suggested an ultrasound biopsy.  Did the test today.  Results were truly scary:

1.   Quick stain revealed that the site tested positive for melanoma.

2.  Ultrasound suggested that the hot spot itself was a nodule outside the main area of the lymph node -- either having expanded from inside the lymph node or grown entirely in the sternocleidomastoid muscle.  In either case, I assume we are now talking Stage 4.

This is a tough, tough day.

I am seeing my ONC surgeon tomorrow to schedule a full tumor biopsy sometime next week.  I assume this will provide a B-RAF status, which had not previously been tested.  I already have a meeting scheduled with my ONC for July 29, and will push that earlier based on the results of the biopsy.

One reaction is anger:  I am being treating at a Top Ten National Cancer Center by widely published people, all of whom are melanoma specialists.  Why didn't anyone think to do a simple ultrasound before now -- NINE MONTHS after the initial warning sign -- instead of all the fancy, expensive but ultimately worthless tests they ran?

A second reaction is stark, raving fear -- fear of telling people (I run a decent sized, high profile business and am involved in a raft of community activities), fear of what comes next in treatment, fear that despite high energy and positive attitude, I might not prevail over this disease. (That list was not in the order or importance).

Those of you who do tons of reading on this disease:  what questions should I be asking that I might not think of?  I am fairly solid on medicines, less so on diagnostics (obviously!) and the various forms of surgery, radiation, disease management, etc.  Is there anything I should be reading tonight and over the next few days to come up to speed quickly?

Those of you who have survived for a long time as Stage 4 -- what helped you?  What changes did you make in life and/or outlook (if any)?  Did you adopt yoga, massage, any successful forms of relaxation?  How much control did you take over your therapy and choices?  

Those of you who have owned businesses and been prominent in your communities -- what did you learn about the process of telling people?  How much did you divulge, and to whom?  What worked for you?  And how much of that can serve as a general lesson, instead of simply a statement about how you roll?

All of you -- what else should I be asking?

I have always met challenges, and believe that I am as well equipped to meet this one as anyone else (of course, a very aggressive tumor may have a mind of it own).  I've scanned this community for the last nine months, occasionally making contributions but mostly marveling at your power, warmth, and cohesion.  Thanks for helping me now.

 

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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lhaley's picture
Replies 7
Last reply 7/8/2011 - 2:24am

Yesterday at my mel specialist appointment I told him that I wanted so badly to celebrate this day as NED. He winked and said he could ask Dr White to remove the tumor this afternoon and then I could proclaim that I was!  Didn't happen, but I knew it wouldn't.  Instead he did a FNA on the new site on my arm below what was supposed to be radiated.

My scans were clean!!!!  2 Lung nodules remain stable, that's about 9 months now.  The lump on the arm didn't show up but it was deemed to small to show on a PET, hence the FNA. 

If it comes back as mel then my options were discussed. I will be leaving it and going systemic since it would just be used as a marker.  If it comes back clean then they will most likely remove it just to be sure.

New trial that has come on board. I had heard but I guess new sites are now getting it. For resected stage 3 and stage 4.  This is great since stage 4 NED have had no options except if you have the positive hla factor!!!  One arm is Yervoy at an increased dosage. Normal protocal but then after the 3 months it's once a quarter to finish the year. The other arm is interfuron - 12 months.  So as normal they give a good option along with one that we don't want to get, especially at stage IV.  Dr and I discussed it, if this new spot ends up being ok but neither of us think I could handle the 5 hours round trip every day for a month if I ended up with the interfuron arm. 

I am excited about reaching this milestone! Have been dealing with mel with multiple primaries since 79 and now 5 years stage IV.

Waiting for the phone call with the results. Can't believe how quickly this has been acted upon. Called office on Thursday afternoon. Friday morning oncologist talked to radiologist and stopped treatments till further info was gathered. Holiday weekend. Tuesday Pet/ct, results, dr appointment and then they talked my surgeon into staying after his other appointments to do the FNA!  phew.

Linda

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Nicky's picture
Replies 3
Last reply 7/7/2011 - 12:35am

 

Hi everyone.

 

I've just appeared on TV here in Australia after having my third primary melanoma removed last week.  Currently Stage 3 for 11 years.

They have these amazing new machines they are trying to raise funds for detecting melanomas and a mobile application for people living in remote places.  I am so happy to have raised awareness for this beast of a disease and supporting the researchers. 

http://www.facebook.com/video/video.php?v=212734718770836&oid=117386068281442&comments

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H555's picture
Replies 5
Last reply 7/10/2011 - 1:38pm
Replies by: jimjoeb, H555

in the femoroinguinal area of my groin and pelvic node sampling and sartorious muscle flap created. From discovery to diagnosis to surgery has been a blur and now I'm in the research phase of this chapter of "cancers I love to hate"

I was diagnosed a few weeks ago as having a 2nd occurence of melanoma - first one was on my right calf 16 years ago and the subsequent surgery to remove the margins was deemed successful. This time, about two months ago, I found a hard painful lump in my inguinal area at the same time that I was having an annual exam in preparation for retirement. CT scans, MRI and bone scans were all clear. needle biopsy a coupe of weeks ago confirmed that the mass was malignant melanoma. This is so ironic in that I've been battling prostate cancer for  more than 6 years and was diagnosed with BCR in january of 2010. that one is growing slowly with only clinical evidence of the cancer.

The malignant lymph node - the size of a ping pong ball - was removed on last Thursday, June 30th, the first day of my retirement... The surgeon sampled lymph nodes in my groin but didn't expect to find any malignancy in any of them. He will call me later this week after consulting with the tumor board at OHSU in portland and we see him on the 12th to go over treatment options. He told me the day after the surgery that I am a classic stage 3C. 

I think I'm healing fairly normally, ive had 5 other surgeries to compare to this one. the fluid in the tubing for the JP pump is kind of orangish yellow now, 5 days post op. also doing lovenox shots daily till the 12th.

I'm looking for info on length of time to heal, i'm still taking strong pain meds every 3 t 4 hours, i can now put a bit of weight on that leg - i'm using a walker- . and experiences of others on this board to help me dial in what we can expect in terms of treatment (Interferon with or without radiation, and others), duration to the extent any of us really can speculate about that reasonably. thanks for sharing any experience you've had with this chapter.

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Charlie S's picture
Replies 18
Last reply 7/8/2011 - 3:05am

In June of 1987 a surgeon stuck a knife in me, carved out a lump in my armpit that turned out to be melanoma.  Stage III with an unknown primary it was.  Yes, you read that right, June of 1987...............twenty four years ago.

Following that knife fight, melanoma lay silent in my body until 1996 when it then reared its' ugly head and made me Stage IV.  Since 1996 I have had had six recurrences, still have active disease and still am Stage IV with months to live....................or so the story goes.

Well over a third of my life and damn near half of it has been saddled  with melanoma wanting to murder me.  In the process I started  a business, lost a business, made a fortune, lost a fortune, had a wife and got bled by a wife, loved and lost true love in my arms with her last breath.

Over the years of being here I have physically met people, touched them, embraced them, been in their homes, shared with their families and watched them die from melanoma.

Each time a friend would die, I screamed to who would listen "take me instead", and so far, whoever decides that says no.

I do not know why I am alive and others are not and that bothers me.

But, whatever the deal is, all I know is to keep banging on melanoma.................and that is just what I am doin

 

Charlie S

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JPost's picture
Replies 6
Last reply 7/6/2011 - 10:34pm
Replies by: JPost, Lisa13, nicoli, Jenjen, Janner

Wondering if anyone knows if there are specific characteristics that distinguish clearly between the two (dermatofibroma vs. Nodular Melanoma)?  I have a history of several dysplatic (i call them my "crazy moles"!) removed in last 5 years, with the worst one on my back which came back as Melanoma In Situ...no problems in last 3 years, then recently (in last 2 months) a new "growth" on my right shin emerged.  I'm having it removed/biopsy in a couple of weeks....it's growing, sort of tan color, like a mole, but raised....is/are there any specific characteristics that tell these 2 apart from visual appearance?  thx!

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Wondering if anyone knows if there are specific characteristics that distinguish clearly between the two (dermatofibroma vs. Nodular Melanoma)?  I have a history of several dysplatic (i call them my "crazy moles"!) removed in last 5 years, with the worst one on my back which came back as Melanoma In Situ...no problems in last 3 years, then recently (in last 2 months) a new "growth" on my right shin emerged.  I'm having it removed/biopsy in a couple of weeks....it's growing, sort of tan color, like a mole, but raised....is/are there any specific characteristics that tell these 2 apart from visual appearance?  thx!

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clairemharvey's picture
Replies 3
Last reply 7/5/2011 - 7:24pm
Replies by: Janner, clairemharvey

Hi all! Just got the results back from a shave biopsy. They are .6, clarks II/III nodular melanoma. I got a copy of the pathology report and there is no description of the margins. None whatsoever. No lateral or vertical margins mentioned. I'm scheduled for a WLE tomorrow and I am not sure how I feel about doing this yet. How can I be confident in the .6mm without knowing that the margins are clear? I hear these shave biopsies can be innaccurate. Any advice? Thanks...

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Replies by: debbieVA

This Saturday, July 9th, I'm having a global, stay where you are, celebration commemorating the third anniversary of the removal of my mole, or, of I Wish I Had Listened to My Mama.

Here's Facebook link to all info.

http://www.facebook.com/event.php?eid=228256307197192

Our own Rich McDonald has rewritten my theme song "Celebration" to fit the occasion.

http://www.hotelmelanoma.blogspot.com/

Whether you sign up to attend or not, please say a prayer for melanoma research, do a full-body skin check, and if you can and will donate to melanoma research. I highlight James Jones Harley ride across the USA (he's posted that on here too) and there's a Miles for Melanoma Walk in Cary NC that same day that I also link to. All proceeds from these two events go to MRF.  Donate to the research of your choice and/or country.

Thanks.

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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A board of cancer professionals determined Wed the cancer drug Avastin should no longer be authorized by the FDA for breast cancer patients. The panel claimed it was ineffective and had unsafe side effects. The Food and Drug Administration will make a final decision in July. Source for this article - A panel recommends disapproving breast cancer drug by Newsytype.com.

 

Subsequent time looking at it

This is the subsequent time a board has ruled negatively on the cancer narcotic. The group agreed that Avastin was not worth it last December. They said that cancer patients' lives wouldn't be improved or extended. A subsequent hearing was prompted by demonstrations from Roche.

In 2008, the FDA approved Avastin for breast cancer treatment. This was because it showed that it could slow cancer tumors for over five months with chemotherapy. But further studies have shown the benefit was closer to three months and the drug did not extend the life of the patient. High blood pressure, internal bleeding, holes in the stomach and other extreme side effects have been shown to occur in the narcotic.
 

Survivors were able to give testimony of it

Breast cancer survivors were there for Roche on top of the expert opinion. Roche had Survivor Patricia Howard said "I am alive today due to Avastin." "I am alive today due to Avastin," was what Patricia Howard said. She was the survivor.

Terry Kelley is the husband of a cancer patient. "Make no mistake, this hearing is a death trial, not of Avastin but of these women who rely on Avastin to say alive," he said. "You are each personally responsible for the consequences of your own vote."

The panel unanimously voted 6-0 to get to the same opinion. Natalie Compagni-Portis, a member of the panel, said, "I think all of us wanted Avastin to succeed, but the reality is that these studies did not bear out that hope."</p>

Some angry
 

After the decision was handed down, the room exploded with unfavorable reactions from the drug's supporters. Christi Turnage, of Madison, Miss., who claims her cancer has been undetectable in the two years since she has been taking the narcotic, shouted, "What do you need us to take? We have nothing else!"

It was called a kangaroo court by Steven Walker who is a spokesman for the Abigail Alliance patient advocacy group. "There wasn't one dissenting thoughts up there, let alone one dissenting vote," he said.

Not finalized yet

After July 28, FDA commissioner Margaret Hamburg will have the final say as the panel's decision may not be binding. Brain, kidney and colon cancers can all still use Avastin FDA approved. Even if it isn't approved, it can still be used for cancer treatments although the narcotic may not be covered by insurance businesses for probably the most part.

 

Information from:

 

Huffington Post
huffingtonpost.com/2011/06/28/avastin-breast-cancer-patients_n_886217.html

CNBC
cnbc.com/id/43582047

Forbes
forbes.com/feeds/ap/2011/06/29/health-health-care-us-breast-cancer-drug-fda_8541968.html

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To celebrate the 4th and encourage all to practice safe sun, I wrote some new lyrics to "Listen to The Music" by the Doobie Brothers.  Best wishes to all!

www.hotelmelanoma.blogspot.com

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