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.

Expand/ Collapse Topic
 
Replies By
View Topic
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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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"

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

chuck's picture
Replies 17
Last reply 7/2/2012 - 4:23pm

After a visual inspection on my wife by a dermatologist the doc told her she has skin cancer and can see melanoma. No biopsy was done. We dont know what stage.

 

they scheduled her to see a plastic surgeon on  july 12th for more testing/surgery.

 

according to my wife.....It was a mole that appeared  in 2009 and in 2010 it broke open (no or very little bleeding) and has been that way ever since. She never knew about melanoma so never worried about the mole.  My wife hasnt seen any doctor other than a dentist in 5 years and I convinced her to go and get a check up and that was when the doc noticed it.

 

I don't know what to do next?

What questions to ask the doc and surgeon.

And all of this happened while im out of town 300 miles away for work. And I can't even be with her. she tells me to stay for the 5 days I have left but I think she needs me there for support.

Im lost.

 

Chuck

Login or register to post replies.

Sharona19's picture
Replies 4
Last reply 6/28/2012 - 12:42am

I will see the Oncologist for the first time since diagnosis, WLE with full thinkness skin graft and SLNB of invasive nodular melanoma of the left foot. So far, margins are clear as are the nodes and I want to as aggressive as possible in keeping any recurrence at bay. Can anyone offer suggestions on questions I should ask about a treatment plan? Are there any Stage II folks receiving treatment? I would appreciate any advice or stories from anyone so I can make the best, most informed decision for my treatment.

Thank you in advance for any help.

Sharon

Everything works out in the end, so if it isn't worked out then it's not the end.

Login or register to post replies.

sjl's picture
Replies 5
Last reply 7/26/2012 - 9:12am
Replies by: Anonymous, sjl, Angelica Camargo

Well, I'm new to the group.  I've been searching and reading this board for awhile and decided to seek out some help.  My husband was diagnosed with malignant melanoma of the nasal cavity (mucosal) in April following a biopsy after surgery for what they thought was an inverted papilloma and no big deal.  In May, he had another surgery to remove more of the nasal cavity melanoma as well as several lymph nodes, one of which tested positive.  A nodule also showed on one lung but they originally were just going to keep an eye on it because it is small and is a fairly common finding in the general population.  After bouncing around from place to place, other doctors suspected that it was cancer and a Pet Scan was finally approved.  It showed up as cancer on the scan.  Now, because they don't know if it's a spread of the melanoma or a primary lung cancer, we are waiting for a biopsy (scheduled for next week) to determine the type before having surgery done to remove it.   If it's melanoma, they will remove the nodule only.  If it's primary lung cancer, they will remove the lobe.  They suspect primary non small cell lung cancer.   Meanwhile, a hole opened up through the nostril near the surgical incision and we are headed back to the doctor tomorrow to get that checked.  Radiation is expected, but not until they do the lung surgery, and now not until the nose is taken care of.  Chemo has been mentioned, specifically interferon for a year, subject to change depending on the biopsy results of the lung.  He's been given an 80% chance on the lung cancer alone if it's a primary and if not, a 50% chance overall.  I've asked about Gleevec if the melanoma is cKit positive and about BRAF but the doctors have no answers yet.  Yervay has been mentioned to me by someone as something to look into.  So, here we are, two months post diagnosis, with no treatment plan and time is ticking away.  I understand that they have a lot to figure out and now the hole in the nose just complicates things even more.  I'm tired, frustrated, scared, the whole nine yards.  Trying to keep track of multiple appointments each week across a two hour drive is nearly a full time job, as I'm sure all of you are very much aware of.  I'm trying to handle all of this while holding on to two part time jobs, which I need desperately right now, but I'm sure all of you have your own similar situations so this is not meant to be a whine.  I'll just have to deal with it like everyone else in this boat.  What I'm very much concerned about is the delay in treatment for my husband.  I'm so afraid that this monster will rear up and take charge because we can't get the treatments started.  How do any of you feel about the delay?  I'm waiting for a call back from one of the doctors about my concerns over this but have heard nothing yet.  Anyone on this board with this type of cancer?  It's so rare and the few messages I've found elsewhere are a couple of years old.  Current information is very difficult to find.  I'm grasping at straws trying to find anything encouraging.  Sorry it's such a long post.  I thought I'd give the full story in hopes that someone here may be able to shed some more light on things for me.  it's such a shock. 

Login or register to post replies.

Pages