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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Hey Shane,

Just wanted to let you know that I've been thinking about you and wishing you well.  Wasn't sure from your last post, if you meant your brain MRI was to be on the 17th or the 24th.  Either way...just wanted you to know that I'm still sending my very best thoughts your way.  Hang in there.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Brendan's picture
Replies 8
Last reply 3/24/2014 - 8:19am

Hi Everyone,

 

I started a BMS PD-1 trial in December and I just had my 12 week scans.  My target met (right lung) shrunk by 78%.  It is now 1.0 cm x 1.0 cm (originally 2.3 x 2.0).  My smaller met (left lung) has resolved!

 

Thanks for your support!  

 

Brendan

 

(I also posted this on MIF)

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Anonymous's picture
Anonymous
Replies 24
Last reply 4/2/2014 - 1:02pm

It seems like lately there have been a lot of cases where someone was diagnosed years ago and told they should be ok and just to follow up with regular exams, etc. . . only to have it come back years later at an advanced stage.  Is it only a matter of when (not if) with this disease once you are diagnosed at any stage? 

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Anonymous's picture
Anonymous
Replies 12
Last reply 3/26/2014 - 1:22pm
Replies by: Carole K, sweetaugust, buffcody, Anonymous, Hstevens0072, POW

My 62 year old mother was diagnosed with melanoma 6 years ago.  

The cancer was removed, and she was very pro-active with her regular followed screenings/checkups

Last week she was admitted to the hospital for severe back pain, and some large unexplained bruises. Through the various tests ran, we have found that the melanoma has metasticized on her liver and peppered her lungs.  

With all of the doctors tending to her, some are very positive and have actually encouraged me to come here and ask for help, while others are grave, and have given her a bleak prognosis.

I want to help my Mom.  

1.  I am not 100% confident in her oncologist.  Who are the best melanoma docs in South Florida that I can call for another opinion?

2.  What questions should I be asking her doctors?  

3.  What are the best medication/therapy options for a stage 4 patient?

We all thought that she had licked this thing years ago.  She is otherwise a healthy, active woman.

Thank you for taking the time to read this and help me.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2014 - 9:48pm
Replies by: Socks, Maureen038, tschmith, Anonymous

3years ned after 2a just found liver met 2.5 cm on right lobe ,where is the best plave to be treated . can go anywhere in the world

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ljhncj12345's picture
Replies 8
Last reply 3/21/2014 - 10:52pm

Larry is starting on a reduced dose tomorrow.  He spent three days last week in ICU. Oncologist was out of town and no one could figure out why his temperature kept going up to 104 and he was having seizures. Whether seizures were caused by brain mets or fevers or both we will never know. We know fevers were caused by combo. I know it took a lot out of him. I think I see why everyone on this sight says melanoma specialist. Doctors at our hospital have never heard of the drugs Larry is on. Larry really likes his oncologist. . Financial counselors and social workers are really great dealing with insurance to get the meds here.  Doc has said if he can't take the reduced dose there is nothing else they can do for him here. I know the drugs were working because 3 centemeter brain met is now 2 centemers after 18 days on Tafinlar Mek Combo. I hope the reduced dose works for us.

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Leslie'sHusband's picture
Replies 12
Last reply 3/26/2014 - 12:06pm

Hello all,

My wife was just recently diagnosed with Melanoma.  She went to our GP back in late January for what we thought was a routine removal of two or three moles and ended up with one testing positive for melanoma.  The one that tested positive had grown significantly, and had started to itch.  We went to a surgeon to have the WLE and sentinel lymph node removal and biopsy.  The good news was that the margins on the WLE came back clear, but the lymph node tested positive.  We met with a surgical oncologist last week, and he recommended that the rest of the "upper level" lymph nodes be removed and biopsied.  A second oncologist that we met with today, who would be the one to provide the 'after surgery' treatment also recommended the same operation, so she's getting herself ready mentally for that.  We go back to the surgical oncologist on Tuesday to set up a time for the surgery, as well as talk about recovery time, etc.  The second oncologist has recommended that she have the high dosage interferon treatment once she is recovered from the lymph node surgery.  Everything is happening so fast that it's hard to wrap my head around it.

I have not done a whole lot of reading on interferon, so I'm not sure where to even begin asking questions...

 

David

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Julie in SoCal's picture
Replies 3
Last reply 3/21/2014 - 2:03pm
Replies by: Gene_S, odonoghue80, Anonymous

Dear Friends,

A dear friend and stage 4 breast cancer patient, is interested in the cancer centers in Tijuana, Mexico.  She's read the stuff on the internet, but is looking for more impartial stories and first person experiences. So  I am wondering if anyone here has had any experience with any of the cancer centers in TJ (like Gerson, Hoxsey, and Contreras/Oasis of Hope) and would be willing to share their story.

I'm not interested in debating whether or not this is a good idea, whether the "Cure" they offer is a real "Cure" or whether or not this is a royal waste of money.  Don't get me wrong, I have opinions! But my friend is in the research stage and is looking for others who have had experience with any of these clinics.  

Thanks!

Blessings,

Julie

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Kim K's picture
Replies 8
Last reply 3/22/2014 - 2:18pm

Just had PET/CT, brain MRI.  Still all clear.  I am still haning onto the long term follow up study of IL-2 responders paper.  No recurrance after 30 months, no one in the study recurred.  I am now well past that mark.

The next conversation is finding the sweet spot of close monitoring yet reducing my exposure to radiation from all these scans.  I have had at least 9 PET/CT and too many CT scans to count.  I don't want to start another cancer trying to stay free from this one.

My docs will discuss that next seeing as so few of us make it this far.  In a way, it is a nice problem to have :).

Wishing all well.

VATS wedge resection & 23 bags if IL-2 in 2010.  I only had a small lung met and a smaller muscle met in my chest wall.

Aloha,

Kim

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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KatB's picture
Replies 5
Last reply 3/21/2014 - 1:31pm
Replies by: POW, KatB, Brent Morris

My husband had his first oncologist appointment today since all this started back up.  (See previous post for more detail, but the short story is: he was stage 2 since 2008 until Feb 24th this year when we found out he had one brain tumor; it was removed by surgery Feb 26th.) 

The recommendation was:

Gamma Knife - we have MRI and radiation oncologist appointment March 31st.  (Not sure when the actual procedure will be yet.  How long do you usually have to wait after surgery?  I have a call in to ask them.)

Scans every three months, starting May 14th with a PET.  (He had a slew of scans one month ago, but not a pet.)

They will go ahead with genetic testing for BRAF and all.

Does this plan seem reasonable?

He said that there is an 85-90% chance that he will get additional tumors at some point (I already figured that); however, my husband was in good spirits after the appointment because the only thing he cares about right now is coming off the steroids, which is is tapering from now.   He is horribly miserable on them and has gain 29 pounds since March 3rd. 

 

2008: Dx Stage 2 - 1.24mm, ulcerated, right arm. WLE, SNLB.

2014: Dx brain met - 3.1cm tumor resected 2/28/14.  TrueBeam treatments scheduled in April.

 

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bj63's picture
Replies 2
Last reply 3/27/2014 - 1:41pm
Replies by: bj63, Anonymous

From Wikipedia: Lhermitte's Sign, sometimes called the barber chair phenomenon, is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward.

I started exhibiting this symptom (Lhermitte's Sign) about a month ago, pretty close to the three-month-mark after finishing the Whole Brain Radiation (WBR) treatment.  I began noticing it as I worked at my computer because I often bend my head and neck forward to look at the keyboard while practicing typing for the two-fingered.  When I look down, I get this tingling sensation running down my spine and arms.

So I told my oncologist and he set me up with an MRI on the cervical spine last week.  It showed no tumors or detectible lesions, so I'm hoping this might be a latent side-effect of the WBR.  I've read that it sometimes occurs with radiation treatment and when it does, it most likely happens at around three to four months after the treatment is done.

Has anybody else who has done WBR experienced this symptom?  Did it ever go away?  If so, how long did it take?

bj63

Sometimes no news is the best news!

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Ninniditti's picture
Replies 5
Last reply 3/23/2014 - 3:43am

Hello all!

I have been in a study nivo/dacarbazine for 12 weeks now. I have hoped that I got nivo but my new MR showed progress so I am out of the study. My MM is in sinus maxillaris and masseter, upper yaw, palatine bone are involved and its growing next to the scullbase. I have had max radiation in this area a few years ago when my MM first started in my nose cavity. So radiation nor surgery is an option. Probably I will get ipi now. I have been told that I will never know which arm I was in. If MM proceed they assume I got dacarbazine. I am quite upset and depressed now but feel a lot of comfort visiting this forum. 

Inger

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flvermonter's picture
Replies 9
Last reply 3/28/2014 - 6:45pm

I have not been on in awhile and was looking to update my profile.  My husband had stage iiic melanoma with surgeries last April.  He decided not to have chemo as no cancer present after radiation. He had open heart surgery Dec 2013.  A pet/ctscan showed no evidence of disease.  February he started having problems walking.  Blood test showed nothing, went to a neurologist who ordered an MRI of the brain. He called tonight to say there are 3 rumors on the brain.  So scared

We always look for the positive side of things, and know that the sun comes up each day no matter how bad a person may fee.

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tickyloo's picture
Replies 4
Last reply 3/24/2014 - 4:56pm
Replies by: tickyloo, evleye, Janner

Hello All

 

So I thought I would throw this one out there, you never know someone may have some knowledge experience.

 

Brief background - breast surgeon during biopsy urged me to see a dermo from mole on neck ( that I ha aldready had a scrape biopsy ) but seeing as I was on a medical roll I went ( thank the lord as I would never have gone back again ) and turns out I have two stage on melanomas.

So now I have had my WLE on both and the dr did a PET scan because he thought it a little different to have two primaries at the same time and the neck and toe are on the same side blah blah.

So, this is the part that is a little vague and I will find out more when I go back Friday , but he read my PET scan report out to me as he himself was reading it for the first time and from what I can tell some actibity was shown in thyroid but I believe this was from the CT element of the PET scan , some light up in my pelvis ( he assumed ovulating but I was two days pre menstrual ) and some stuff in my boob we assume from the biopsy . Cant say Im a great fan of assumption though.

 

So I had a thyroid ultrasound on Mon and I have a little nodule 1.3 cm ( i know this because I asked the tech ) on the same side as my neck MEL but Im sure I saw another one the other side.

So my question is, based on the rare chace a neck MEL can spread at stage 1 and the fact that MEL and tyhorids arent an obvious connection. If it were you what would you do ?

I feel Im just stage one and this could be overkill, or could it ? Who knows you get so bloody confused in all of this. I dont want to start acting like someone sicker than I am .

 

So has any one any experience of thyroids and neck MEL ?

 

Thanks so much as always

 

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Tracy Chicago's picture
Replies 1
Last reply 3/20/2014 - 9:20am
Replies by: katie1

Feeling so frustrated right now. My daughter is 5 and I'm trying to find a summer camp for her since I work full-time. NONE of them will put sunscreen on her; they will only do spray which we all know is not good enough. I asked if they would apply lotion to her if I signed a note or got a doctor's note and they all said no. She is so fair skinned and I've had melanoma so her chances for skin cancer are high.  I work closely with Risk Management at my job so I know they are coming from a liability stance but I don't want my daughter to get skin cancer! She'll wear a long sleeve rash guard but what about the rest of her body?!

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