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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Rebecca and Bob's picture
Replies 3
Last reply 7/11/2011 - 7:13am
Replies by: lhaley, Carol Taylor, Lisa13

 

My husband is going in for scans next week, does the anxiety ever stop? Praying for NED to continue. It will be 2 years since his last surgery. 4 years with all of this so we consider ourselves lucky.

We would like to continue with the bear attack story for now :) when it comes to our 5 and 7 year old. We can always tell the real story when we are old and gray.

 

Rebecca

 

Believe

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Netlla's picture
Replies 19
Last reply 7/11/2011 - 3:14am

Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph.  He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other? I just feel like one of the two are his last option, he is getting very sick, and I just don't want to make the wrong decision on treatment. Please help! 

There is always hope.

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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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mom3girlsFL's picture
Replies 3
Last reply 7/10/2011 - 1:25pm

Good Morning all,

I was off enjoying a much needed vacation with family in the mountains of Georgia this past week and had a question.  Since my radical groin dissection (Sept 2010, I think) I have had very minimal swelling - surprising my surgeon even.  I did end up seeing a lymphedema specialist who released me after 4 visits b/c I really wasn't having any issues.

Fast forward to vacation and out of nowhere I am swelling pretty good.  From my toes up to about my knee, possibly a little further up.  Elevating my leg is not helping much.  And, of course, since I have had no issues I did not bring my compression shorts on vac with me.  Now that I am home, I've elevated and put on my shorts, with little improvement.

Of course I am worried something may be going on.  Anyone with similar experience?  Should I call the lymphedema specialist tomorrow or my onc and report the new symptom?

Thanks, as always, for your help.

Laurie

Do not fear tomorrow, God is already there.

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Al In Kansas's picture
Replies 22
Last reply 7/10/2011 - 1:23pm

Lab results from a mole removal say:  Malignant Melanoma, Superficial Spreading Type, Clarks Level II, Breslow Thickness 0.4 MM, Margins Negative.

More details are in my profile.

I'm not having much luck finding Doctors in Kansas that Specialize in Melanoma treatment.  If anyone has a recommendation for a DR. in Kansas it would be appreciated.

A friend has advised me not to mess around and just get to a research facility.  Is that sound advice?

From the list provide here at MRF the University of Colorado Cancer Center is the closest but I haven't found a Dr. Specializing in Melanoma.  How important is that?

M. D. Anderson, Mayo and St Louis University School of Medicine are all about the same distance for me to travel.  I have a daughter living in St Louis so leaning towards St Louis University.  Has anyone here been treated there?

Any and all advice will be appreciated.

Thanks,

Alan

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DeniseK's picture
Replies 13
Last reply 7/10/2011 - 7:15am

Hi All,

I had a couple questions about tests that should be done to determine if the Melanoma has spread.  At this point I've had my surgery, SLN which was negative.  I just had PET Scan and Brain MRI and they came back clear.  I'm going to see specialists at the Northern California Melaonoma Center in San Francisco either this Wednesday or next.  But I have yet to see an oncologist.  My tumor was breslow depth 14mm clarks level V and ulcerated.  My stage is IIC with a high risk of recurrence.  My questions are what other tests should I have done?  What about a LDH level in my blood?  Shouldn't this be done?  What if the Melanoma went to the bone?  This is concerning to me because my MM was on my chest wall.  Also someone told me that PET scans can't detect tumors smaller than 5mm.  Is this true?  How often do you get PET's in the first year?  Thanks for all your help!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 4
Last reply 7/10/2011 - 1:59am

I had my 3rd Ipi infusion yesterday.  I posted about it when I came home, the computer ate my post, then I went to bed.  

I've shared my stomach issues (and I did mention to Dr. Wolchuk that some docs are prescribing Immodium for on-going issues, and he said that it's in the physician instrustructions that they all recieve that Immodium should only be used 2 or three times and if it continues to go onto the Entocort.  It's so weird being on a drug that's so new that not all the docs treat the side-effects the same way--even if they're in the same hospital.)

I now have a mean Ipi rash on my torso.  First you can barely see it, but once I start scratching, it's huge.  They prescribed something like Kenalog creme; doesn't do much & can only be used 2x/day.  The rest of the day I use Eucerine, Sarna, etc.   I was taking Zyrtec & Benedryl, but can only take 2 benedryl at night. Today I told them it's getting worse so they prescribed a stronger antihystimine.  I gotta tell you, being on Ipi sure gets my phone calls returned fast.  They practically want to know if I sneeze twice in a row!

ANYWAY, when he saw the rash, Dr. W was so happy!  He said it looks like I'm definately responding and he's also excited about the white that's running all throughout the melanoma itself (it's on my temple/upper cheek).  He said that he hopes it will start flaking off soon.  From his mouth to G-d's ears!  Even between my first & second infusions, it was starting to spread again, and it's been stable (at least visibly)  since the second infusion.  The radiation had initially stopped the spread, but that didn't last long.  But it did buy me some time from when the Ipi was approved until it was actually available non-trial use, so I guess it did serve some purpose.

I was excited to get my appointment for 3 weeks and a PET scan app't for 3 weeks after that.

Boy have my priorities changed.  My husband has liver disease, and now I pray that both of us will be alive to hold our grandchildren.  My kids (21 & 23) know how much I adore babies/children and they've always teased me that maybe I don't want them to wait to get married so I can be a grandma.  (I do.)  I always took it for granted that I would see my children get married and have children of their own.    I WILL BEAT THIS.

Have a good weekend, everyone.

karen

 

Don't Stop Believing

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I was just diagnosed a couple of weeks ago and staged at T1b, with a Breslow depth of 0.56 mm.

The day I saw the Dermatologist (after waiting 4 months to get in) and got a formal diagnosis of melanoma, he did an excisional biopsy the same day. Several weeks later I had a wider margin excised and a sentinel node biopsy performed. Both the margins and the lymph node came back negative.

So what happens next? Do they typically suggest you have chemo anyways? Or am I now "a survivor"?

I do know I am required to visit the dermatologist every three months for several years. But other than that I'm wondering if further treatment is typically recommended at this stage?

Thanks In Advance,

Steve

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Tim--MRF's picture
Replies 3
Last reply 7/9/2011 - 3:53pm
Replies by: MaryD, Cid FLA, Nicky

A melanoma patient was featured on the Today Show this morning.  Doug Schwenker and his wife, Tara, came to MPIP for information during his treatment.  Here's the clip:

 

 

http://today.msnbc.msn.com/id/29054368/ns/kathie_lee_and_hoda/#43670441

 

Tim--MRF

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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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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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mollysue's picture
Replies 19
Last reply 7/9/2011 - 9:23am

I was just denied for insurance due to a stage 1 melanoma from 3 yrs ago. Mine was very thin. I think it was 1a  and the thinnest the doctor had ever seen. I would like to send a letter to the insurance company as I don't think I am a huge risk. I did have a lymph node taken out due to the doctor being able to "feel one" in my groin. The lymph node was of normal size and negative. The surgeon who took it out said they could feel it because I am thin and in shape. She also stated lymph nodes can enlarge as the bodies natural response to having been insulted.- as in an excision close by. Both of these diagnosis have blocked me from purchasing insurance. Any suggestions as to facts I could use in my letter?

Thanks,

mollysue

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willtolive's picture
Replies 10
Last reply 7/9/2011 - 4:18am

Hi everyone

I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version): 

I am the husband to a 39 year old woman from Denmark in Europe.

In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.

In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.

In 2008 melanoma relapsed in another lymph-node, surgery again.

In 2009 melanoma hit us hard (Stage IV). It had spread to her lungs, one met in each lung. The size of the mets was 25 mm and 16 mm respectively. Surgery was fortunately possible.

In October 2010 melanoma went back. This time there was multiples mets in each lung. About 5-6 mets in each lung. The biggest was 19 mm. It was unsurgeable, which was very hard to cope with.

In November she began Interferon/Interleukin-2 treatment. It was tough beyond imagination. She had all the known sideeffects, and she was so bad during hospitalization. The midway PET/CT scans in January revealed that she was a responder! Scans showed that all the mets had become inactive or necrotic. Some mets had even shrunk a little bit. We were delighted, and she continued with the third and fourth series of Interferon/IL-2.

February 15 we got the results of the next scan. We were optimistic because the midway scans was indeed promising. We were shocked when told that the melanoma had began to grow again. There was 2 active mets now. One big met, about 32 mm in diameter, in her right lung lightened up. In addiction there was a lot of fluid in the right lung membrane, and it probably contained melanoma-cells. All other mets was still inactive, except one, and our doctor feared that it would be only a matter of time, before the other mets would begin to grow again. We were devastated.

Our doctor suggested Ipilimumab, and my wife started March 11, on the same day Japan was shaken by the huge earthquake. I watched it on TV while she was receiving the first dose of ipilimumab (3 mg/kg dose). I remember wishing that the drug was the earthquake of our lives…

My wife have always been a positive and happy human being, no matter what challenges life would bring, she still truly believe that she could defeat this Melanoma Devil. She began consulting a Chinese doctor and received acupuncture twice a week. Beside this she trained 4-5 times a week, fitness and running. In these situations we talked about preparing your body to fight the cancer, with a "little" help from our friend, ipilimumab…

She received 4 doses every third week and got a CT scan in June.

Three days ago on June 21 we arrived to the hospital to talk with our doctor about the results of the CT scan. The time from the scans being done and to get the results is awful with a lot of anxiety, you guys all know… The scan showed that the 32 mm met in the right lung was completely GONE!!!!! The fluid was gone too, and the x-ray showed a nice healthy looking right lung. We were stunned. I hugged my wife with a lot of tears in my eyes. Our doctor was very delighted too. Ipilimumab had worked much better than expected. We had hoped for stabilization, maybe shrinkage, if we were lucky. But this???? Unbelievable. Some other small mets was still there but hasn´t grown in size in half a year, and our doctor said it very well could be necrotic tissue.

This is where we stand now. We´re thrilled and delighted and so so happy. We have now dared to plan for more than a month :-)

So this story is to all you Warriors out there, keep on fighting with believe and trust in your hearts. The path is very tough but the battle can be won, sooner or later. We´ll keep fighting this Devil.

 

Kind regards

willtolive

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Lauri England's picture
Replies 2
Last reply 7/9/2011 - 12:36am
Replies by: FormerCaregiver, akls

I went to the Onc appt yesterday and she felt a bebbie size lump under my right arm. Same arm as melanoma was in originally.  It is hard and I cant tell if it would hurt or not because my underarm is totally numb from lymph node removal a year ago.  The doctor said we can just keep cutting you or we can wait and see.  I am 9 months into interferon and have had no scans.  I have had 3 more moles removed and another lymph node biopsy and all were benign.  Not only is this very costly co pays but I am not sure I want to be cut anymore for a while.  Am I being over cautious?  The doctor felt this one and did not seem to concerned, but she did tell me about it.  What would you do?  I am going to have a CT scan in October right after my interferon treatments are done.  I have also been having problems with my bladder.  I will just suddenly start to urinate in my pants and cant stop it.  I dont even feel the urge to go to the bathroom when this happens.  Has anyone else experienced this?  I am going to be seeing a uralogist in the next couple weeks. 

Don't sweat the small stuff. There are bigger fish to fry!

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Nicky's picture
Replies 6
Last reply 7/8/2011 - 9:09pm

Went back to outpatients at the hospital today to get my results after a wide excision for melanoma in situ.  Yippee all clear margins!!! so happy today.  This is my third melanoma primary over 11 years.  Currently, Stage III from a lymph node dissection in 2001 with one node with melanoma followed by radiation.  5 years later a level 3 desmoplastic melanoma on arm, following by radiation and as of last week a melanoma in situ on back, all clear with the wide excision.  Yeh, I just love giving this disease a kick, three strikes and you are OUT melanoma.

The marketing department at the hospital wanted me to assist them on a television interview to promote new machines in detecting malignant moles and a mobile phone application for people in remote areas which is on an earlier post.  Anyway the professor now wants to put me on a trial,DNA testing and checking over all my moles with this machine.  At last I feel I'm in the best hands and that there is no room for misdiagnosis.

So as far as I'm concerned melanoma is STRUCK OFF and hit out of the stadium.

 

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