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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csellers23's picture
Replies 7
Last reply 1/2/2015 - 4:24am

My husband is to have srs done in four places in his brain over the next two day. Tonight his fear is worked up and he has doubts if he wants to go. He had wbr back in september and it took him out after about 3 weeks after treatment. It has given him short term memory loss to this day and mad him very sleepy. he has fears that they might hit the worng spot and cause brain damange his nerves are bad right now. we are on yervoy in two weeks we get our 3 dose and after srs they want to treat his rib spine and back with radiaion oh and chest anyway we are looking for others who have been here and can tell me what to expect or what it was like. we dont have to do the halo by the way. thank you

Crystale

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StephyD83's picture
Replies 13
Last reply 12/30/2014 - 2:54pm

Hi All-
I just received my Re-read of my Pet/CT Scan from UCSF and they found a 3mm non - calcified nodule in my right upper love of my lung. Anyone have this and it turns out to be nothing?
Thanks!
Stephanie

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JustMeInCA's picture
Replies 2
Last reply 12/28/2014 - 12:13am
Replies by: JustMeInCA, Janner

My dad had a PET/CT back in October, and I just found the report buried among copious blood test results in his online medical record. I should preface this by saying that at the time of this scan, he had just completed two infusions of Ipi and has since done four infusions of Keytruda. We've seen some reduction in the smaller tumors on his leg (the smallest has virtually disappeared), and he will be re-scanned in three weeks.

However, on this scan from October, I found the following notes in the "Findings" and in the 'Impressions' sections and I'm not sure what they mean:

"Heterogeneous non-hypermetabolic 2.2 x 1.8 cm hypodensity in the midpole of the right kidney which cannot be characterized as a simple cyst."

"Heterogeneous non-hypermetabolic right renal lesion not well characterized on prior CTAC worrisome for primary renal neoplasm.  Melanoma metastasis is considered less likely given the lack of hypermetabolic activity as seen with the other melanoma metastases."

Does this suggest that he has a new, non-melanoma cancerous tumor on his kidney, or does it suggest that it is a new and different melanoma primary? The doctors know that dad doesn't want much detail on the disease, so what we were told at the time was that there was some growth of his lung mestasteses, which was a good thing in our minds as it allowed us to move to Keytruda, but this kidney business was never discussed.

Logically, I know that I shouldn't worry too much about it at this point since we're due for a new scan soon, but I'd just like a little clarification if possible.

Thanks so much!

Elaine

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Kdw2012's picture
Replies 2
Last reply 12/28/2014 - 4:09pm
Replies by: kylez, arthurjedi007

It has been six weeks since they found 3 brain tumors.

I started having hand tremors headaches thought problems and they decided to re-scan BRAIN MRI.

Now on 12/23/14 they say there are 9 new ones, this seems like it is happening so fast and aggressive, they start Whole Brain Radiation on 12/24/14 

i just wonder where do we go from here?

i am mid dosing on the Yervoy with two treatments left, my radiation oncologist wants to hold off on next dose until radiation is finishes in 10 days.

last PET/CT of body showed no tumors, but they are going to repeat that Jan 10

 

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Rosegargala's picture
Replies 6
Last reply 1/2/2015 - 10:49am

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 10
Last reply 12/27/2014 - 12:25pm
Replies by: Linny, Anonymous, SABKLYN, Colleen66, Rosegargala, momof4boys, kylez

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 6
Last reply 12/27/2014 - 1:12pm

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 11
Last reply 12/27/2014 - 2:14pm
Replies by: eerye70, 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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