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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Nicklindner's picture
Replies 9
Last reply 2/10/2017 - 7:05pm
Replies by: Nicklindner, Mat, debwray, jennunicorn, Anonymous, Hukill

Started throwing up blood this morning. Went right to my cancer center and got labs taken. Liver levels are high. Getting an endoscopy to figure out what is going on. Has anybody had these side effects to ipi/nivo? Supposed to get my 4th dose in a week but not looking great for that. 

Thanks for any help. 

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_Paul_'s picture
Replies 18
Last reply 2/10/2017 - 6:58pm

Wow, where to start. My cancer continues to grow and spread. I am in Seattle, back at the hospital. It was simply getting too hard to do the most basic of things back home. I have a surgery planned tomorrow to place a stent in one if my kidneys. It can't drain urine because it is blocked by a tumor.  I have gained about 20 pounds in water and I am bloated from my toes to my midriff. This big tumor in my lower right lobe is squeezing a large part of the lung shut, which is developing bronchitis-like symptoms, I.e a wet cough.

I will fly back to LA where I have a room waiting in Palliative Care.

The plan is to consent the trial on Thursday and receive my first infusion the following Wednesday. It feels like a race. I just need to survive long enough to see if this new treatment can turn things around. I have put up the best fight I know how. I have so much to live for, not to mention the awesome story I would have, but I am just going to do my best and hope for the best.

- Paul

To exist is beyond fantastic.

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Bubbles's picture
Replies 10
Last reply 2/10/2017 - 2:55pm

Been thinking of you every day!  Hope you have gotten your stent and are feeling a bit better in that regard. Fingers crossed for your getting to sign on to your trial tomorrow.  Big hugs to you and yours!  love, c 

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Anonymous's picture
Replies 7
Last reply 2/10/2017 - 2:46pm
Replies by: Sheepsandcows, MaPerny, Anonymous, _Paul_, David McCaw

Melanoma stage 4 with metastasis in lungs and spine

BRAF mutation

Not responder to IPI (Yervoy)  PD-1 Inhibitor (had to be suspended) and BRAF/Mekinist combo. Waiting to be approved for a new trial Atezolizumab and MTIG7192A

Residence: Canada

Thank you!

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youngann's picture
Replies 8
Last reply 2/10/2017 - 1:19pm

My previous scans showed a lesion in the breast - biopsy = negative, 4 nodules on the thyroid - biopsies = negative, and 5 pulmonary lesions.

I had my follow-up CT yesterday and 3 of the pulmonary lesions have resolved, the remaining 2 are unchanged. I'm taking that as very positive news :-)

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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newmanmark's picture
Replies 10
Last reply 2/9/2017 - 9:33pm

Hello,

I have been a stage 4 patient since 2012.  In December 2016 I started on the IPI/Nivo combination and made it through 3 rounds.  I am due for my 4th round next week.  However, this week I developed a headache that persisted for 5 long days.  Yesterday I had bloodwork done and an MRI.  They confirmed that the pituitary gland is swollen.  The oncologist and endocrinologist agreed that it is worth a shot to save the pituitary with high doses of prednisone that will be tapered down every 5 days.  In the meantime I will not be receiving treatment.  

The likelihood of getting the 4th infusion if Ipi is small as they believe it will only damage the pituitary further.  The good news is that I should still be able to continue on the Nivolumab.  I haven't had a CT scan yet to determine the response to treatment.  Hopefully the tumour in my pancreas has responded.

I was wondering if anyone else has a similar response to this treatment and were you able to continue on with Nivolumab?

Thanks
Mark

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Kristenp's picture
Replies 6
Last reply 2/9/2017 - 6:47pm
Replies by: jennunicorn, Kristenp

My doctor did a shave biopsy of the top of my  right ear and it turned out to be melanoma.  She referred me to a dermatologist in Philadelphia to have it removed (I go Monday) and she sent me for blood work and a chest X-ray.  She didn't talk at all about seeing an oncologist, and I was so shocked by the diagnosis that I didn't question her.  I'm waiting until morning to call the office and ask some questions.  In the meantime, maybe someone here can help me out.  The pathology says the Breslow is at least 1.1, there are 4 mitosis/mm2, it has nevoid features, and is at least a T2A.  I'm completely freaked out, and the more I google things the more upset I get.

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Hriggenbach's picture
Replies 8
Last reply 2/9/2017 - 3:45pm

Has anyone had there femoral artery cut and repaired during there groin lymph node removal?

Mine was cut and had to be repaired. I spent 5 days in the hospital than 6 days in a nursing home, I was then sent home in a wheelchair with nerve damage from my knee to my ankle and I've lost all feeling in my thigh. I have not been able to start my cancer treatment yet because I have so many  surgical wounds. My dr said my lymph node was attached to my femoral artery and it was nicked so the vascular surgeon removed a 3 inch section and reattached my artery. They are tell me it is somewhat normal I'm in extreme pain and I'm really questioning if this is true? 

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Bmine102793's picture
Replies 2
Last reply 2/9/2017 - 1:51pm
Replies by: debwray, Anonymous

So fiance got surgery to have a growth on forarm removed and armpit lymphnode removed biopsy came vack positive for melanoma in both abd he was diagnosed stage 3 because of lymph node involvement. Had ct scans and mri done and all was clear and the syrgery actually removed all that was visible on ct scan. As precaution we were reffered to melanoma specialist at clevland clinic for second opinion which we see next week we figured they would prib do opdivo therapy but we just got another call for a same day app wuth a radiation oncologist. So what does that mean? Maybe radiation and not opdivo?

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JennyBaums's picture
Replies 5
Last reply 2/9/2017 - 11:58am

My Mom initally had malignant melanoma removed by dermatologist (2.86 deep) in September 2016, then had wide resection without sentinel node biopsy. The path report showed no evidence of melanoma in the surrounding tissue. The oncologist suggested a certain type of radiation (IMRT) as treatment however the insurance would not approve it and we have been fighting them for 4 months. it was suggested by her primary physican to get another Oncologist to help fight with the insurance, the 2nd Dr. says radiation should have never been an option and we need to get scans, blood work, and possible lymph node re-section and immunotherapy treatment given the results. I feel like my mom has fallen thru the cracks and has been waiting 4 months with no treatment or testing. At this point we are really not sure which Dr. to believe and need some advice. Also we are in Las Vegas, NV so if anyone has any refrences for good dr.'s or support groups for her I would be forever grateful! 

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Hi, 

Jennybaum has posted below asking for advice AND a specialist recommendation for her mum as treatment so far has not been as would be expected. Has anybody got personal recommendations please ?

Many Thanks

Deb

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 9:49am
Replies by: Fen

I had surgery on Tuesday to remove the melanoma and 2 lymph nodes. The lymph nodes came back benign. 

Thank you for all the support here. I have been reading along, and I am just amazed at how smart and brave you all are. 

I hope this beast never returns to me, but it is so comforting to know this group exists. My step father passed away from melanoma in 2004. I pray for all of you that they find a cure for this type and all cancers, soon.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 1:07am
Replies by: Treadlightly

 Long story made short in the early spring of 2015 I noticed a tiny pink/brown, perfectly round mole on my thigh.  several dermatologists told me it was normal. I was 34 when I noticed this mole.   In January of 2016 I asked one of them to remove the mole and they did a shave biopsy.   At this time it was about 3mm-4mm.   I had constantly been poking and prodding at it because it was bothering me since it did not look like any other moles.  It did not grow at all or change colors. 

I had to return and have margins removed.  I forget how much skin they took but I have a nice scar from the removal.  The dermatopathologist told me this was an atypical spitz nevus.  He said that the margins were clear and that the shave biopsy got it all.

I had not thought about the mole until I saw an article about a lady who had much larger mole removed, I believe 9-10 mm,  that was changing.  Her initial diagnosis was an atypical spitz nevus but then a short time later she had a swollen lymph node and it was diagnosed as a spitzoid melanoma by a specialist.  The article explained how sometimes they screw up the diagnosis of an atypical spitz and melanoma. 

I am trying to put my mind at ease somewhat.  I noticed this in the spring of 2015 and it is almost two years later.  If mine was a melanoma would something else have popped up ?  Like a swollen lymph node etc ?  Nothing has changes on my scar and I am perfectly healthy.  

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Marydel's picture
Replies 2
Last reply 2/8/2017 - 11:54pm
Replies by: Marydel, KMick

Has anyone out there had a free flap to cover the skin removed on the top of the foot?

1. Did you have to stay in hospital after?

2. What type of protection did they give your foot?

3. When could you get up and walk?

any other info you could add would be great!

Marydel

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Jenine's picture
Replies 1
Last reply 2/8/2017 - 11:34pm
Replies by: _Paul_

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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