MPIP: Melanoma Patients Information Page

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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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curious12's picture
Replies 2
Last reply 10/6/2019 - 11:32am
Replies by: MelanomaMike

Hi,
I am not sure if i have this mutation but it was notated in a dermatopathology report years ago. Now that I am almost 50, I am wondering is there any kind of screening for pancreatic cancer if i do in fact carry the gene?
I would find out first, but all of this scares me!

Thanks!

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Carlsbad317's picture
Replies 2
Last reply 10/6/2019 - 11:10am
Replies by: MelanomaMike, Casitas1

My dad was diagnosed last Feb with melanoma. After 3 combos of Ipi/Nivo and severe toxicity that resulted in a few very close calls he opted to discontinue treatment, sit on his patio, drink Diet Coke, chew on his cigars, and eat what he wanted especially an Olive Garden Salad. (Salad was banned due to his chronic diarrhea.)
His oncologist told him as the tumor was back to its original size he had two options. Nivo or surgically remove what they could. The first attempt was aborted in Feb because to was an auxiliary mass intertwined with nerves and ligaments. Due to the toxicity he refused to put more treatment in his body.
My dad looked for a surgeon willing to operate and was repeatedly told no. The bottom line was too risky and “would piss off the cancer cells.”
We convinced him to go back to Huntsman and see Dr. Hu and Dr. Hyngstrom.
Both doctors agreed with our Vegas Onco surgery was an option.
On Tuesday Dr. Hyngstrom successfully removed all of the tumor, trimmed some muscle and took a bit from the chest wall to ensure he, “got it all.” No damage to nerves.
Path reports are not in yet, but Dr. Hyngstrom said he had no evidence of live cancer. He felt the growth was the dead cells are what caused the tumor “grow.”
We do not know what the future holds and understand this is a beast, but to go from really no good option - to potentially no evidence of disease - is freaking amazing on this journey.
And really it came down to experience and willingness. If we have not sought additional opinions he would be sitting on his patio and thinking this was his best life

Hanlon

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nasullivan's picture
Replies 8
Last reply 10/10/2019 - 8:36am

REFERENCE REGIONS: SUVmax and mean in a reference region in the liver
are 3.1 and 2.7, previously 2.8 and 2.4.

SKULL/SCALP: No new abnormal uptake. Unchanged mild
uptake in pituitary with no companion CT correlate, probably physiologic.

HEAD/FACE: Resolution of FDG avidity in the
multifocal hyperattenuating brain metastases.
NECK: No abnormal uptake.

LUNGS/AIRWAYS: Markedly decreased FDG uptake and size of
right upper lobe paramediastinal pulmonary nodule, 1.5 x 0.9 cm,
previously 2.1 x 1.7 cm, SUV 2.7, previously 17.8. Again noted scattered
non-FDG avid subcentimeter bilateral pulmonary nodules, mostly unchanged
with the exception of right upper lobe anterior, 0.5 x 0.4 cm, previously
0.7 x 0.6 cm, current series 3, image 152. Mild bibasilar probable
dependent/atelectatic changes.

PLEURA/PERICARDIUM: No abnormal uptake.

MEDIASTINUM/THORACIC NODES: Decreased FDG uptake and size (difficult to
measure on noncontrast companion CT) of right mediastinal and hilar nodes:
* Right upper hilar, SUV 2.7, previously 9.3, current series 3, image 131.
* Right hilar, SUV 3.5, previously 7.7, current series 3, image 135.

HEPATOBILIARY: Pattern of diffuse mild heterogeneous
uptake in the liver probably related to statistical noise with no definite
suspicious focal uptake in the liver. Post cholecystectomy.

SPLEEN: No abnormal uptake.

PANCREAS: No abnormal uptake.

ADRENAL GLANDS: Decreased uptake and size of left adrenal
metastasis, 1.0 x 0.9 cm, previously 1.3 x 1.2 cm, SUV 3.6, previously
8.5, current series 3, image 182.
KIDNEYS/URETERS/

BLADDER: Excreted activity present.
Unchanged bilateral renal cortical cysts.

ABDOMINOPELVIC NODES: No abnormal uptake.

BOWEL/PERITONEUM/
MESENTERY: Slightly more prominent diffuse
increased FDG uptake in the colon.

PELVIC ORGANS: No abnormal uptake.

BONES/SOFT TISSUES/EXTREMITIES: Unchanged heterogenous marrow
uptake with again slightly more prominent focal areas without CT
correlate, for example representative left sacrum, SUV 4.2, previously
3.2, current series 1200, image 249. Unchanged degenerative changes in the
spine.

Post Right hip replacement arthroplasty. Unchanged mild heterogeneous
uptake at the shoulders and knees probably degenerative/inflammatory. Mild
diffuse uptake in muscles of the forearms and lower extremities considered
benign.

Focal uptake in the right forearm likely at the site of radiotracer
injection.
Decreased FDG uptake and size of left cutaneous/subcutaneous soft tissue
thickening in the left foot, SUV 2.2, previously 5.2.

OTHER FINDINGS: None.

IMPRESSION: Since August 2, 2019
1. Resolution of FDG uptake in the multiple brain metastases.
2. Markedly decreased size of pulmonary, mediastinal nodal, and left
adrenal metastases.
3. Decreased uptake in left foot cutaneous/subcutaneous soft tissue
thickening, probably resolving cellulitis.
4. Unchanged probably reactive heterogeneous bone marrow uptake with few
slightly more prominent foci without CT correlate, indeterminate.
5. More prominent diffuse increased colonic FDG uptake, probably
inflammatory immune mediated colitis. Recommend clinical correlation.

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Affected's picture
Replies 4
Last reply 10/8/2019 - 6:40pm
Replies by: Marcyazh, MelanomaMike

Hi Everyone,

My husband began both his radiotherapy and immunotherapy yesterday. He had a parotid gland tumour resected with 2 lymph node involvement in July.
Last week, I posted questions regarding the adjuvant nivo dosage he was to get, and the information I got from all those who posted greatly allayed my anxiety. Thank you once again.

In case knowledge of my husband's dose can serve as a reference to anyone looking for such information, his dosage is 3mg/kg. He is to get an infusion every 2 weeks for a year. He will also have daily radiotherapy for 6 weeks. I know it's only day 2, but he slept well and has no visible side effects yet.

Wishing everyone a good weekend.
Affected

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happyfeet123's picture
Replies 1
Last reply 10/4/2019 - 12:36pm
Replies by: MelanomaMike

Hi Everyone
I mostly keep up with everyone by reading the blogs and keeping everyone in my thoughts and prayers. I have a question regarding catching the current yucks after being off of keytruda.
My question is does having cancer make your immune system comprised
in the future?
Thanks
Tammy

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Julie in SoCal's picture
Replies 9
Last reply 10/7/2019 - 12:05am

Hi there Friends!!!

Last Monday was scan day; Tues I got the results (I know I'm spoiled!). The results are that the NSCLC in my neck lymph nodes is responding to the targeted chemo. This is very good news. Everything that was on the scans before is shrinking! Unfortunately, it also showed a suspicious uptake and mass in my hilar area under the breastbone between the pulmonary artery and aorta. It also showed uptake 2 places in my arm where melanoma lives and I can feel the bumps. So I have active NSCLC and melanoma, Oh, and I have pneumonia, too. When the antibiotics kick in I should feel much better!

Yes, I will get a biopsy of the hilar thing. I'm not sure how they'll do it, but until we know it's name we can't treat it. It's in the same area as Larry the lung cancer, but it isn't responding to the targeted treatment. Have I mutated already? It's only been 3 months. Is it Mel? I knew he was a bastard, but boy what a location for him to land in-- blood flow central! I have so many questions. I've sent an email to the Rock Star and his band, so I'm just waiting.

At this point in time, I'm just rambling and trying to remember that life really is good. I just bought a teardrop trailer and am fixing it up for an epic Grand Teton NP and Yellowstone NP trip next June. I'm a photographer and have always dreamed about going on the road, finding beautiful places and setting up the most perfect shot! I've put it off because setting up the tent took too much out of me. But a trailer is just the ticket! Ok, you get it.

So this is the news and where I'm at.

Wishing you all peace,

Julie in SoCal

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Wow!, check these guys out! Im really in good hands at The Angeles Clinic!! Tempus is a state of the art research company paving the way to better treat our disease, im blessed to have had a portion of my sample biopsy go to them... heres their link....
https://www.tempus.com/

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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mohamed's picture
Replies 5
Last reply 10/8/2019 - 2:26pm

im a moroccan 25 old male, 2 years ago i started noticing new atypical moles in my arms face back and penis , all my life i had only 2 moles in my gorin , but at 23 years old i started seeing these moles apearing for no reason, i stupidly burend 2 moles on my right and left arm and they didnt comback , after a while , one that apearde in my right arme freaked me out it had atypical border and had 6 mm in size 1.5 years ago , i tryed to burned it also , after a while it started to comback in the border of the burn, i stupidly ignored it untile now , so i went to a local dermatologist with my mother, he toled me not to freak out , he didnt brought biopsy to te subject , so i asked him should i have a biopsy , he responded that he can remouve it and send it to a pathologist but i shoud pay extra , with no assurance (im an unemployed) i coudnt pay and now im trying to get the money for it, my parents think im just creazy because the dermatologist sayed nothing to worry , but its me who saw the change from a tiny mole to 1 cm atypical mole , our hospital care system is catastrofic like all third world countrys , i dont know even what to expect if find out i have advanced melanoma witch is very likly , i actuly think i have multuple melanoma as one mole in my penis is geting biger , im living in fear and depression , not knowing what to do , i also have swollen lymph glands in my groain and i think i have enlarged liver
i just want to ask if 2 years old melanomas can be treated or not and what you think about my situation

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Shelby - MRF's picture
Replies 1
Last reply 10/2/2019 - 10:37am
Replies by: MelanomaMike

Dear MPIP Community:

The MRF regularly works with our pharmaceutical partners to share stories and experiences. If you have taken, or are taking, Keytruda as an adjuvant therapy and are willing to share your story and perspective, please contact Jalisa at jstanislaus@w2ogroup.com. We truly appreciate all you continue to do to help the melanoma community. 

All the best,

Shelby - MRF

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njezna's picture
Replies 2
Last reply 10/2/2019 - 11:24am

Hello everyone,

I went to my yearly check up on Friday and my dermatologist did a shave biopsy for possible melanoma. She told me it's 80/20 in my favor. I had some previous abnormal moles removed two years ago, pre-cells but nothing too serious. Now she said she didn't like the way that this one looked. It was suspicious. Needless to say I've had shortness of breath since Friday I am sure due to the anxiety regarding all of this. Please share your thoughts and prayers with me. I am a young mom and to even think that this could be positive absolutely breaks my heart.

Thank you all

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MelanomaMike's picture
Replies 7
Last reply 10/4/2019 - 7:38pm

Today her moms test results come in today so, lets hope its atleast decent to continue her treatment!! God, (or your choice of Higher Power if any!) Prayers, good vibes, fingers crossed, horse shoes, wabbit feets, crystals we need it all!....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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gregisblessed's picture
Replies 5
Last reply 10/17/2019 - 5:46pm

Hello, I am grateful for this avenue of support and the wonderful encouraging words I have received. I am back with a concern and wanted some feedback.
I was diagnosed with scalp (crown) melanoma, 1.65mm depth, no ulceration, December 2015. CT and PET were clear, SLNB resulted in removal and biopsy of 11 LN, all clear. Excision of scalp with clean margins (skin graft from thigh). NED since although about two years ago a vitamin B deficiency resulted in dizziness and 10 months ago a cough that wouldn’t go away coupled with dizziness resulted in my GP ordering a head and chest CT scan which was clear.
My new concern (hopefully I don’t seem like a hypochondriac) is the dull tension headaches that i’ve had for about 10-12 days that won’t go away. The last day or so, they’ve been accompanied by some nausea. I’ve tried not wearing contacts, decreasing caffeine intake, taking antihistamines thinking maybe it could be allergies, etc. Should I seek out a MRI? Have others had brain mets with tension headaches as only symptom? The nausea isn’t bad or constant so wondering if Dr Google is making me paranoid. Any thoughts appreciated.

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sks2019's picture
Replies 12
Last reply 10/1/2019 - 1:20pm

Posting for my mom, she recieved her ipi/nivo combo 3 weeks ago and she was running fever 100 to 101 for last two days along with body aches , most severly in the thighs and lower back, she is almost immobile. , nurse advised to give her mortrin which we did, but today she is running 102 I will call the oncologist tomorrow morning. I am hoping this is not creating any permament side effects or effecting any organ.

Has anyone experienced this before and how did you dealt with it ? How long does these side effects last ? She is having her second round on Oct 7 and I hope she can take it. She is very de motivated by all these side effects and wants to stop the treatment. She was very healthy and active before this combo started and never felt sick before.

Please pour in your experiences.
Thanks a ton !

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MelanomaMike's picture
Replies 7
Last reply 10/1/2019 - 11:12am

Hi guys, i have a question concering something i found out about my specific med on an Incyte page (the sponsor)that ill be starting INCMGA00012, (just that drug, not in combonation with the other drug ill be taking Epacadostat) a short report of its phase 1 study dated last year September 2018, could someone explain what Radiographic and Clinical Progressions mean? Heres what it read: Overall, 107/162 (66%) of patients had discontinued treatment as of the data cutoff primarily due to Radiographic progression (40%) and Clinical progression (11%)......

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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feelingalone83's picture
Replies 8
Last reply 9/30/2019 - 2:41pm

My husband has now had 3 rounds of combo yervoy and opdivo...with every round new side effects...he is now even a type 1 diabetic on top of it due to the therapy. He has stage 4 with brain metastasis and also had 10 rounds of radiation finished a week ago. In the last week he has become confused...saying things that don't make sense, forgetting what he is talking about...has anyone else dealt with this? Its definetly been a scary road. We have new mri and ct scans in a week to see if he is even responding to treatment. All I know is that I'm scared to death, heartbroken, and do my best to be strong all the time. I just want my husband back and I fear that it won't happen. They say spend time together...do everything you can...how do you do that between hospital admissions, tired all the time, and every other side effect? How do you find things they are willing to eat? I'm sorry I'm all over the place. We have been together 20 years have 2 children 11 and 16, and I can't imagine my life with out him....if anyone has tips or experiences to help I would greatly appreciate it. I feel so alone in this.

lydia loth

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