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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lhaley's picture
Replies 10
Last reply 7/2/2012 - 5:43pm

This week is the 6th anniversary of being told I am stage IV.  With my latest 2 brain mets 2 weeks ago I'd like to hope that I'm NED but am realistic. 

The day we came home after the SRS we called our son and confirmed that we were going to Disney World.  Leaving in the morning and can't wait to watch our grandaughter (she is 2 1/2) be excited to meet her idols - Mickey and Minnie. 

This week we are not letting melanoma get in our way of having a great time.

Linda

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Replies by: chalknpens, Anonymous, JerryfromFauq, BethA in VA, lhaley

Hello,

I'm brand new to the site and to melanoma. My faher had basal and squamous cell cancers, and often had them removed without surgery; I think they froze them off. He did have Moh surgery one day on one of the sites. He went back and forth to the surgeon two or three times that day (my husband was his driver.)

I'm here because i don't really know what to expect. I had what the skin surgeon called "slow Moh" surgery, over a period of about eight days. He would cut, send the cuttting out for biopsy, cauterize the wound and have me come back two days later for results and more cutting, until finally the fourth pathology report came back with clear margins. He then sutured the round wound (about the diameter of a coffee cup) in a Z shaped pattern of about forty or fifty stitches in all. This all sounds rather dramatic, as i had never had stitches in my life (and I am in my sixties now.) But it was relatively painfree, and I was very calm (I have antidepressant medication.) I also had some small basal sites 'excised' during the month of June. Final stitches come out this week.

I have never had a 'full body scan' for further sites, but anticipate that in August when i see the dermatologist again, rather than the surgeon. I have the risk factors, having spent my childhood at the beach, and having fair skin, freckles, small flat moles, blue eyes, and light hair. But I have stayed away from the sun for the past thirty years or so, because I am heat intolerant. I have a diagnosis of relapsing remitting multiple sclerosis. Heat and strong sunlight are my enemies, and have been for decades.

I am afraid of the August appointment. I am afraid that they will find more, and cut more, and biopsy more and cut more again. I am already being treated for MS-related depression. I don't want this to go on and on and on. But what is the likelihood that it will not?

I am not perfect, but I am enough.

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hbecker's picture
Replies 6
Last reply 7/2/2012 - 3:55pm
Replies by: Linny, hbecker, lhaley

Just wondering if anyone has experience with GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) trials? This seems to be the only treatment option that fits  - a melanoma without juncture on the skin, possibly (probably?) primary dermal, that was about 9mm thick, fully excised and no spread to the sentinel nodes, no evidence of spread on PET/CT scan. No one has yet agreed on a stage because it never showed up on the outside of the skin and they can't do the depth or thickness scales properly. The concern is the size - it was pretty thick, even if it couldn't be measured. 

If anyone has any experience with a case like this, or with the vaccine trials, please respond. Thanks!

blogging at www.hazelbecker.com

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zoocrew6's picture
Replies 11
Last reply 7/2/2012 - 8:12am
Replies by: Anonymous, jag, zoocrew6, CarolA, sjl

Hi, I am new here and fairly new to melanoma.

7 weeks ago I had an axillary dissection and my recovery had been going great. I went in for my scans to begin a research trial and my chest CT showed " something " ... that something is a hard lump that over the past 2 days has gotten slightly bigger and today noticed my skin is a light purplish color over the lump. The lump is located just above my scar from the dissection. Starting to hate weekends because I cant call my doctor to ask so thought maybe joining here would help. Could a tumor grow that quickly ? What about the change in skin color literally overnight ? My hand and wrist on the same arm is slightly swollen, so am wondering if it could be sercoma and not such a quick reoccurrence. I havent even gotten the chance to start a treatment, was still recovering from surgery and even my nurse said it would be a quick return. My dr didnt read my scans, the nurse did and am now waiting for a PET scan. I guess I am hoping for some peace of mind or to know yes I should accept its back so soon and just face it.

little background - primary was a mole on my left hand, had the mole all my life then a year ago it started to fill with blood. Apr of this year, I noticed a swelling under my armpit  (left). Had mole biopsy'd, told it was melanoma. Had surgery, wide excersion mole removal, skin graft done and all the lymphnodes removed under my arm...5 out of 15 were cancer.Surgery was May 14th.

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Hi, I am new here and fairly new to melanoma.

7 weeks ago I had an axillary dissection and my recovery had been going great. I went in for my scans to begin a research trial and my chest CT showed " something " ... that something is a hard lump that over the past 2 days has gotten slightly bigger and today noticed my skin is a light purplish color over the lump. The lump is located just above my scar from the dissection. Starting to hate weekends because I cant call my doctor to ask so thought maybe joining here would help. Could a tumor grow that quickly ? What about the change in skin color literally overnight ? My hand and wrist on the same arm is slightly swollen, so am wondering if it could be sercoma and not such a quick reoccurrence. I havent even gotten the chance to start a treatment, was still recovering from surgery and even my nurse said it would be a quick return. My dr didnt read my scans, the nurse did and am now waiting for a PET scan. I guess I am hoping for some peace of mind or to know yes I should accept its back so soon and just face it.

little background - primary was a mole on my left hand, had the mole all my life then a year ago it started to fill with blood. Apr of this year, I noticed a swelling under my armpit  (left). Had mole biopsy'd, told it was melanoma. Had surgery, wide excersion mole removal, skin graft done and all the lymphnodes removed under my arm...5 out of 15 were cancer.Surgery was May 14th.

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susanr's picture
Replies 6
Last reply 7/8/2012 - 9:31am

Hello Everyone,

I see many posts re: PET/CT scans.  Many of the posts reveal necrosis within many organs. I see some post Brain, liver, lung, etc.  My brother just had his PET/CT this week and had necrosis at the center of a left pelvic mass along with some nodes containing necrosis.  Had yervoy 12/2011, just finished Temodor and Abraxane.  Some comments I hear that it can be a good sign, bad sign,  or no significance.  Any comments to help offer some in- sight.   Doctor did not even comment on this but I see so many of us post this ?  Thanks so much...!!!!!!

 

Susan R.  NY

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SStamps's picture
Replies 1
Last reply 7/3/2012 - 9:44am
Replies by: MeNDave

I have been reading the site everyday but haven't updated in awhile. My husband Mickey started zelboraf 3-1-12 4 pills twice a day all was going well. He had scans on 4-24-12 they show shrinkage in all areas, but on brain MRI showed a flair close to his ommaya they said they will check again in 6 weeks. The week of mothers day his left eye would get red in the evening only then that Sunday he stayed in our bedroom because his eyes were so light sensitive. Saw our eye Dr here she put him on steroids drops. Called MDAnderson as this is a possible serious side effect of zelboraf , they took him off the zelboraf until he sees eye Dr in Housron. We saw him , he referred him to an eye Dr that specializes in uveitis she did see some spots on his right eye at this point she is not sure if it is the zelboraf or the IL2 Mickey gets thru the ommaya for his leptomeningeal or how he is made . So she is tapering him off the steroids sent him for lab work to rule out somethings like autoimmune disease. We will have follow up with her in July.Still no Zelboraf or treatment for leptomeningeal. We went back for the brain MRI on 6-5-12the flair is smaller BUT they find an incidental finding (looks like a string) and an acute lacunae infarct. He has NO Signs of a stroke the PA told us it is common for people not to know they have had a stroke until it shows on the MRI. We saw a neurologist she said they would know for sure if it was a stroke if it fades on next MRI. Dr Papa did put him back on zelboraf on 6-6-12 3 pills in the morning and 2 in the evening for one week then if Mickey was doing ok could go up to 3 pills in the evening as well. We have been to see our dermatologist here he did a punch biopsy on a mole it is not melanoma but wanted to clean margins more on 7-5-12 we will not be making that appointment because I found a lump in Mickey's right breast and will be at MDAnderson for a fine needle aspiration on that date. They didn't want to wait until we are there for scans that start on 7-16-12. He hasn't had a treatment for the leptomeningeal since 4-25-12 but Mickey is feeling great!! He is active he is out working running around until 12 or 1 then he comes home waits on the sun to go down far enough and he is out doing yard work. Will be doing CT of chest and abdomen, spine MRI, and brain MRI the week of July 16th and will see Dr Papa for results on the 18th we also see eye Dr on the 18th will update soon.
Praying for all of you
Samantha

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yoopergirl's picture
Replies 3
Last reply 7/1/2012 - 4:27pm

Had my biopsy done on Weds morning and then in the afternoon had the fluid drained, he took out a liter and a half said I was operating on one lung. My problem now is I am so sore from the procedure, which is not suppose to happen so am wondering did he hit a nerve or punture the lung?? I called there yesterday and was told to go to the ER and have a lung xray if it continues. My biggest problem is I can not lay on my side have to stay on my back and then it doesn't hurt, will see how it goes today and  might have to go to the ER tomorrow. Thought my coughing would stop too but that hasn't either. I will start my clinical trial on July 23rd. Have to redo the cat scan and mri of the the brain within 3 weeks of the trial but can have that done locally insteed of traveling 6 hours. Dr Albertini will be doing the trial for me. BTW the wedding was wonderful, I cried a couple of times only.

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Lisa - Aust's picture
Replies 7
Last reply 7/2/2012 - 6:38pm

Hi All

I dont post much, but visit all the time. My husband Craig, who is on the GSK B-BRAF inhibitor trial, just had his 12 weekly scans and he continues to respond well. In fact, the report this time said 'complete remission' - which I guess we all know probably isnt technically possible, but still nice to have nothing show up. Our clinical trial nurse said he has been one of only two on this trial who have had this complete repsonse. I had a bad feeling about this scan, so it was great to get this news. This now puts him at 72 weeks on the trial.

We feel so blessed to have had such great long term results - hopefully others out there can have the same success.+

All the best

Lisa - Aust

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kammariel's picture
Replies 4
Last reply 6/29/2012 - 11:05pm
Replies by: jag, WendyPam

I am so pleased with how well my husband is doing, that I have to share. A week ago, he had a grand mal seizure while on vacation. While we waited at the nearby hospital for a bed to open up at JWCI, we were given some scary news that the tumor had returned and was most likely not operable. Once, we got to his neurosurgeon and oncologist at JWCI, we were given much better news. Although he had two hemorrhagic tumors, they were near the surface and operable.

John had two craniotomies yesterday and is recovering nicely! The last couple of months have been quite a rollercoaster with WBR, numerous cranis, brain edema and all of the symptoms that go with that. Before putting him back on steroids, I watched my husband dying before my eyes, sleeping all of the time, not eating, confused, memory loss, slurred speech, muscle loss, fatigue, shivering, etc. There were some dark days, and I was losing hope. I feel like we keep getting second, third and fourth chances and am so grateful. John's appetite is great and there are no noticeable cognitive deficits. I just want to offer hope to others in similar circumstances.

John's onc wants to start him on a Temodar/Avastin combo in two weeks. I'm just so glad that all 4 of his brain mets have been recently resected, so that the treatment has a chance to work at preventing them from blowing up again. Have any of you had a Temodar/Avastin combo? Love to hear your experiences.

I hope my husband's experience can offer inspiration to others fighting brain mets.

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deardad's picture
Replies 6
Last reply 7/2/2012 - 4:16am
Replies by: deardad, benp, MeNDave

So dad had a CT scan on Wedneday and we get results on Monday. He has been on Temador for the last two months and has progression in the brain. As of two days ago he had a fall from loss of balance and is now complaining of a numb right foot. I rang the hospital and they ordered an MRI on the brain and spine that day. I can't tell you how frightening this all is. What a evil disease.

Sorry to those fighting this battle too.

Nahmi

Daughter

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LauraJean's picture
Replies 4
Last reply 7/1/2012 - 1:08am
Replies by: Janner, alicia, Gene_S, Linny

Hi! I am recovering from my second melanoma, this one was in situ (yeah). Still many stitches by my ankle but I'll survive :) . My first was in 2006 on the same leg but on thigh. It was 2.1 mm SNB negative, did a month of Interferon infusion. I love my dermatologist but am wondering if I should find a melanoma specialist? My mother also had several primaries - 3 I think. Not sure what to do at this point, any suggestions? I am in the NY/NJ metro area. Thanks!

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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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susanr's picture
Replies 7
Last reply 6/30/2012 - 6:19pm
Replies by: susanr, Eileen L, WendyPam

Hello everyone.  My Brother is Stage IV. Primary Acral/Foot. 1.5mm Dx. 2/2009.  He just finished two- six week rounds of Temador and three infusions of Abraxane.  Yervoy in 12/2011...seems to not be a responder. Not strong enough for Biochem.  Brain/spine/liver/other G.I organs clear. C kit and braf-negative.

Started this regimen because mult. Pulm and abdominal mets/nodules,. along with mass in left pelvis.  had doctor appt. on Weds. and all is stable post Temodor and Abraxane except the left pelvic wall mass which is now bigger/huge.....wt. loss big but he does have an appetite and eats but not like he use to.  Doctor now started Nexavar and Carbo.  Told many patients have responded to this regimen... but when I research this combo....I am not too happy with results/outcome.  Is anyone on this now or have taken in the past.  I did back track posts on this forum and some have but nothing I have seen recently.  I see most of you on clinical trials/zelboraf/yervoy. Thanks for the help/advice/coments.

Regards to all the fighters. 

SusanR NY

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Mrsgkr's picture
Replies 1
Last reply 6/28/2012 - 8:59pm
Replies by: AllyNTAus

For those that are taking Zelboraf and have skin mets, have you noticed a difference in them? If so, how long did it take before you noticed anything different?

My husband has been on Zelboraf since May 6. He was originally on the full dose of 960 mg twice a day, but due to the severity of the side effects the dosage was reduced to 720 mg twice a day.

So far there hasn't been any change in his skin mets and he hasn't had his first ct scan since starting the Zelboraf. We spoke to his oncologist about it, but all he said is that the mets are the last thing to change.

Thanks,
Valerie

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