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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Rosegargala's picture
Replies 3
Last reply 12/26/2014 - 5:56pm
Replies by: Rosegargala, Bubbles

If I have it does that mean I will be fighting new melanomas all the time ?

Roseyes

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Rosegargala's picture
Replies 6
Last reply 12/26/2014 - 9:38pm

I will be going to OSU James Cancer Center on January 6th !!! This happened because my nurse told me that all the Braf gene does is determine my treatment , which is true but she thought I hadn't done my research !!! I'm over them !! They told me that they test for the braf gene when they remove the melanoma ! My doctor ask if they had tested and she said no ...that was on the tenth of Dec. Ummm my surgery was on the 7th of November!! When I called a week later she said it takes 10 days to get the results back ....I thought to myself ....really ...its been over a month since my surgery ...shouldn't you already know ??? The doctor had assumed i had already been to oncology !! When i told him no he looked at the nurse and said make the appointment ! I called 2 weeks later to see when my appt. Was and she said that oncology wont take me until i have the rest of my nodes in my groin out ....funny cause the doctor didnt seem to think that mattered !!I am so dissatisfied with the way they have handled things....lies after lies !!! I know that going to OSU is going to scare me but I also know that I will have a fighting chance!!! I am always polite but it gave me GREAT satisfaction to call them ( answering machine) and tell them that all my records need to be sent to OSU !! God bless all of you !!!

Roseyes

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tschmith's picture
Replies 7
Last reply 12/26/2014 - 8:40pm

Had my brain MRI and Ct scans on the 23rd.  Things are continuing to improve with nodes and tumors shrinking or resolving.  One in my stomach has enlarged but the doctor doesn't think it!'s cancer.  YAY KEYTRUDA!

Blessings to you all!

Terrie

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yazziemac's picture
Replies 5
Last reply 12/26/2014 - 9:14pm

Hi Folks, and Merry Christmas for those who celebrate:

I'm just worried about my Stage 4 husband, Pete,  who had a craniotomy and gamma knife radiation for brain mets within the last month or so.  He's currently weaning off Dexamethasone and is on 4mg/day, soon to be reducing to 2 mg/day and then weaning off entirely. Pete just doesn't seem himself and I don't know whether to attribute it to the steroids, the brain surgery, the radiation, or what.  I worry that he's on the road downwards, which makes me kind of freak out.  How normal is it to be extremely fatigued and "not himself"?  I don't want to be unrealistic in my expectations of his recovery, and would really appreciate some feedback on what is normal to expect during this time.  I find myself worried a lot at times, and I'm not sure who to turn to.  Thanks for any help you can provide.

Yasmin

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marissav's picture
Replies 10
Last reply 12/26/2014 - 1:17pm
Replies by: marissav, Janner, Ed Williams, JustMeInCA, SABKLYN, Anonymous

I went to the doctor yesterday to have the stitches removed from where a biopsy was taken of a suspicious mole.  I was seen by a ARNP at the Dermatologist.   She told me it was melonoma, Stage IV.   I was in complete shock but I had done enough research that I asked, "How could it be Stage IV if you don't know it has spread."   She assured me it was stage IV and set me up an appointment to see a surgeon after the first of the year.

I have a copy of the pathology report and it says, Clark's Level IV, measuring 1.45mm in thickness, ulceration - absent, pathologic stage - T2a.   From everything I am reading this is Stage II but it's Christmas day and I can't call the doctor.   Can anyone help me understand the pathology report???  I am thinking she has confused the Clark's Level with staging??

I am scared and worried....

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Happy_girl's picture
Replies 1
Last reply 12/26/2014 - 12:52pm
Replies by: BrianP

I just wanted to wish my melanoma family a very merry Christmas!  I know I have so much to be thankful for, and am having a wonderful Christmas already with family and friends! I pray the same for each of you too! Merry Christmas!!! 

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heiditemple's picture
Replies 3
Last reply 12/26/2014 - 1:03pm

I was diagnosed with stage 3C in December 2013. I was in clinical trial E1609 until about a month ago, where I received 10mg/kg of Yervoy (ipilimumab). Unfortunately, I was kicked out of the trial after one maintenance dose because of adrenal failure. :( last week, I went to see the surgical oncologist who did my radical neck dissection. During the exam, they found what they suspect is a swollen lymph node very close to where one of my scars is.. Maybe 4 inches from the original melanoma. They haven't called me back to schedule the ultrasound and fine needle aspiration and I'm getting more nervous by the day. I already have scans scheduled for Jan 2nd that were on the books before this. The recent exam was done at Vanderbilt and I am currently receiving treatment (scans, etc) locally in Knoxville, TN.

IF this comes back as melanoma, can anyone tell me what my next steps would be as far as treatment? I don't know if I'm BRAF positive as my original melanoma wasn't tested. 

 

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Ginger8888's picture
Replies 9
Last reply 12/26/2014 - 1:05pm

Had my second scan after Yervoy on the 15th and was supposed to get the results on the 29th but they called today and moved my appt to Jan 9th..Well i've think i've already waited long enough for results so i called and left a message wanting my results and they called me back and here it is..

Well just got a call back from the Nurse at my Dr office and i believe we've got good news...Said everything looked good and nothing lit up on Ct scan..Whoot!! Said i have a slightly swollen lymph node by my right aorta but that was there last time and they believe it to be benign and the one in my neck is smaller (could be dead cells) so i'm a happy camper right now..She said no sign of  metathesis!!! I will wait to fully celebrate after I talk to the doc just in case she missed something but Hell Yeah I"ll TAKE IT!!

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I've been reading a lot about some new drugs (CCT196969 and CCT241161) that have stopped the growth of BRAF-driven melanomas, including those that had stopped responding to currently available BRAF-targeted drugs.  Some articles indicate clinical trials will begin in early 2015.  Has anyone read any more details on when and where those trials will take place?

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/24/2014 - 3:38pm
Replies by: _Paul_

My son had his primary mole removed from the scalp. He has a considerably big scar, therefore  he leaves his hair long these days. The surgeon told him that hair transplant will not work because they went really deep to remove the mole and tissues.

Now, it is time for a hair trimming :-) and this question came up again. How to cover up that area of the scalp?. I think it is a sign of strength and resilience to explore ways to feel comfortable in your own body.

Does anyone have experience with this?

Happy Holidays!

 

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Nell's picture
Replies 5
Last reply 12/25/2014 - 4:36pm
Replies by: Nell, WITom, Anonymous, Julie in SoCal, BrianP

I have been on prednisone for 5 months because of Yervoy induced colitis.  I am tapering off...slowly.  Could prednisone, which lowers the immune response, adversly affect Yervoy.....I guess this question really goes along with my previous post concerning my post Yervoy scans......Thank you for your input.

One voice can make a song; one life can change the world.

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Nell's picture
Replies 2
Last reply 12/23/2014 - 10:31am
Replies by: Anonymous, Mat

I am stage IV.....mets in lung and liver. I had 3 infusions of Yervoy....had to forego the 4th because of colitis. I was thrilled when my first scans following the 3 infusions showed marked shrinking of the nodules in the lungs and the total resolving of a couple lung nodules. There was also an indication that several liver nodules were diminishing. There was no sign of new metastasis.  3 months later I was scanned again. There was no additional disease, but also no further diminishing......classified as stable.  Is it probable that I have received whatever benefit from Yervoy that I am going to receive?  Or is it possible that the Yervoy may yet continue to work to destroy more nodules? I of course had hoped to see less disease the second scan...naturally had hoped for NED....but I would like to hear from anyone who could shed some light as to whether I could expect further improvement after being stable last time.   I am grateful for stability, but as you all know, disappearing disease is what we all hope and pray for. Is it most likely that the Yervoy has done what it is going to do? I have scans again next month, and I am nervous and wondering. Thank you for your input....and bless each of you on this road with me.

One voice can make a song; one life can change the world.

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JoshF's picture
Replies 6
Last reply 12/24/2014 - 2:12pm
Replies by: JoshF, SABKLYN, Anonymous, Mat

Hi All-

So I noticed about 6 weeks ago a small bump by scar on cheek where I had WLE. Obviously can't help but think that it's another reoccurence but there are some differences. First of all, there is no "nodularity" or hardness. It's a real subtle bump that you can hardlt feel. You can only feel it if you lightly rub fingers in one direction otherwise you can't feel anything...just odd. I'm worried but it wasn't like the nodlules I found in past...scar tissue?

I went to derm for regular follow up....said nothing during exam. He was thourough once again checking scar closely, doing the lobster claw withthumb on inside of cheek while massaging over scar. Felt nothing....so then I mentioned to him and he noticed but didn't seemed concerned, felt it was scar tissue but was willing to do punch biopsy of cheek. I opted to wait to see onc who didn't seemed concerned but also doesn't want to leave any stone unturned and sent me to surgeon the same day. He conferred with onc...not concerned but not going to dismiss. I'm going back in 2 weeks.... should I ask for needle biopsy, open scar back up for 3rd time? He felt MRI would show nothing.... just wants to watch it.... I'd be lying if I said I'm not scared....very anxious....can't stop digging in my face to try and convince myself it's nothing....this is what eats me up....waiting.....wondering....

 

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/23/2014 - 6:23am
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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Jsneathen21's picture
Replies 4
Last reply 12/25/2014 - 11:20am

Hello! I was wondering if anyone could share how much time off they took from their sentinel node biopsy? I am in retail it's busy this time of year and I have a tight schedule but I know I need to get This node biopsy !! Thank you all in advance!

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