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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JudiAU's picture
Replies 2
Last reply 8/21/2019 - 6:59pm
Replies by: JudiAU, Bubbles

Hello all, Unhappily joining this community. :( I suppose we all feel that way. I had a melanoma removed about five years ago. 2B lymph nodes unaffected. Routine CT and then xrays were fine for three years.

Two years ago I had an MRI of my brain to check symptoms I was experiencing. I was grateful to find that it was that not melanoma , but a nastily placed large Schwannoma. I had surgery again, and then radiation. Along the way I temporarily lost my vision, had sepsis, steroid medical error that caused glaucoma, bizarre TMJ and my cheekbone shifting from anesthesia, and a major surgical stroke where I lost all control on my right side. Other than the terrible nerve damage in my face, I'm mostly functional and can still be a wife and parent to my three kids. I’m 46.

On my last MRI my tumor scraps were stable post radiation but they found a new mass and it is most like Melanoma. I was already with Cedars and have met with Dr Hamid who said I need to remove the tumor, follow with radiation, and then do immunotherapy. I have surgery with my same neurosurgeon.

Does anyone know how my previous surgeries will effect me? I assume it is riskier. I’ve already been through so much.

What form does radiation take? Do I complete when I’m stable? What is the time frame? What about immunotherapy? Is that usually coupled with radiation? Assuming it is successful, how long does this all take? I’m just trying to get a grasp of my future. My PET scan is not back yet so I don’t know if there are other sites.

I feel like I’ve gotten every side effect known to man and I’m having hard time facing brain surgery again when all I want to us drive carpool.

Judi

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/21/2019 - 5:31pm
Replies by: Hukill, STL Mike, smiller

Hello All,
My husband was diagnosed with stage 4 in july. He is getting ready for round 2 of yervoy and opdivo next week. He had bad side effects a few daya after first round. His nauseau was uncontrollable and he wasnt eating or drinking so he had to be admitted for a few days. While there had several fevers. Finally got thing under control and is now home eating and drinking but the hiccups recently are non stop...any one experience this or have tricks to stop them?
Besides that Im terrified...the weight loss and amount of sleeping is scary. Its hard to watch him go through this knowing I cant fix it. Can someone please tell me what to expect through this treatment....first scans were done a few days ago and appears to have enlarged and progress....is also on his brain...doctors are hoping to see changes after round 2...sorry im all over the place with this post....it just seems to be taking him down so quickly and even though he says he feels a difference, all i see is him getting worse...more weight loss...more sleeping....less and less motivation...ect
Thanks for the help

lydia loth

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bobrenard's picture
Replies 4
Last reply 8/21/2019 - 10:26am

Hello everyone.

I registered today to have information and raised doubts about a lesion that I have on the arm.
I am 38 years old french living in Paris.
I have a few years (about 3 years I think) a lesion that looks like a spot, 5mm and pink.
A little worried, in August 2018 I went to see a dermatologist who did not seem worried by this lesion. In order to be sure of his diagnosis, I went to see a second dermatologist who , using a dermatoscope, validated the diagnosis of the first dermatologist. For him, nothing alarming and no need to remove this lesion.
This lesion never changed in size or color.
However, this lesion looks nothing like the moles that I can have on the body.
Regularly, I measure it and observe no change.
About a week ago after running, I realized that this lesion was scratched on top.
I had previously read that a lesion that did not waren could be a sign of melanoma.
I started to be very worried. On this lesion, a crust was formed and I read that it was the sign of an ulceration !!
I then urgently made an appointment with a new dermatologist.
Meanwhile, two days ago, the crust fell and the scratch completely healed. The spot has found its state before. No color change, no change in size.
Yesterday, I went to my appointment with the dermatologist who after a complete oscultation, think it should remove this lesion for analysis.
So I have to go in 10 days to undergo the exeresis.

Independently of the fact that I am very worried by the analysis of this lesion, I would like to know if a melanoma-type lesion that would have been scratched can heal ?
In addition, a melanoma-type lesion may not evolve (grow or change color) for several years?
The dermatologist that I saw yesterday, told me that it could be a dermatofibrom or a naveus of sptiz, and that it is better to make sure of it.

Thank you for reading me.

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fedupnurse67's picture
Replies 3
Last reply 8/21/2019 - 9:06am
Replies by: Bubbles, Linny, lkb

Hi guys, I'm a new, old person to the boards. Its been some time since I was here. Almost made it 20 years! But... I had an abnormal LDH in March, rechecked in July and it was still abnormal but higher then it had been in March. So that earned me a CT Scan of my chest, abdomen and pelvis. Results of that showed enlarged lymph nodes in my retroperitoneal space, basically some enlarged lymph nodes by my spine. That result got me a biopsy of those lymph nodes. Well when I went to interventional radiology they took the biopsies from my front lower abdomen. I won't get the results back until August 26. I know though that the biopsies will definately be positive for cancer, just what kind?

I'm wondering about treatments now days, and about possible lymph node dissections? Just concerned, and interested.

As a background, I was diagnosed stage 3 in June of 2000. I never had a primary site on my skin. I had a lymph node removed from my left groin that was the size of a small egg and was 90% cancer. It had appeared the lymph node did its job and keep the cancer there in that 1 lymph node. I did one year of interferon, completed in June of 2001. Tolerated it very well from what I'm gathering now.
I have been 19 years NED... till July of 2019. This isn't a ride I wanted to do again.

Any information would be greatly appreciated.

Donna

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Carlsbad317's picture
Replies 1
Last reply 8/21/2019 - 9:28am
Replies by: Bubbles

If combo treatment is out due to colon - and braf negative....what did you do next?

Hanlon

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MelanomaMike's picture
Replies 4
Last reply 8/21/2019 - 12:07am
Replies by: MelanomaMike, lkb, Hukill

Hi family, boy my Sigmoid Melanoma tumor really is letting me know hes alive, its gettin harder to go poop now, i threw up while i was going, (thank God for our little trash can near by! Haha) and i went for the most part, i guess thats the Vagus nerve that gets stimulated? I just wanna make it to Texas & back, come back & get treated! Melanoma sucks eggs...
Sorry for the graphics, just lettin you know the physical aspects of a tumor slowly closing up my intestine...not fun..

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

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NewEra's picture
Replies 2
Last reply 8/20/2019 - 3:41pm
Replies by: NewEra, MelanomaMike

So if the infliximab finally kicks in and stops my diarrhea I might be able to have targeted therapy sometime in September. For now I'm still stuck to the porcelain god and IV lines.

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aweatherred's picture
Replies 6
Last reply 8/21/2019 - 4:54pm

Since my last post, and findings of 3 more lymph nodes w/ mets on PET, had another resection (8/5/19) and affected lymph nodes increased to 9! Oncologist has prescribed Mekinist 2 mg daily as well as Tafinlar 150 mg 2 tabs BID. These medications scare the hell out of me! Today is the start date (as I sit here starring at the bottles). Radiology Oncologist consulted yesterday, and has plotted out 4 weeks of radiation, to start in two weeks. He did find another "worrisome" lymph node, so MRI tomorrow to see if this is possibly just an inflamed lymph node or another metastasis, I'm hoping for the later. This roller coaster can slow down any minute now!

I would like any feedback from anyone that has been on these medications, and how they coped with the side effects. As I am taking these kicking and screaming! I think they call this "healthy skepticism".

Any help would be greatly appreciated

Audrey

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marta010's picture
Replies 1
Last reply 8/20/2019 - 11:47am
Replies by: Bubbles

HI - my husband, Larry, had his quarterly scans and the good news is that there is no evidence of cancer in his body. His brain - always the problem child - is not as clear. The MRI shows an increase in edema and possible met recurrence in the surgical cavity from his March 2018 craniotomy. He's scheduled for his 4th craniotomy next week to clean out the "stuff". We thought he'd just have gamma knife but this would be the 3rd time for this spot (first gamma in 2015 and second following the 2018 surgery) and his radiation oncologist was less than enthusiastic given the presence of inflammation. So here we go again....hoping for his usual ability to bounce back but not sure how many times a brain can be withstand this procedure. Assuming he will resume Keytruda/Tafinlar post surgery. One thing at a time - what else can you do! This will also provide the opportunity to do a full genetic assessment of the tumor - maybe we'll find a mutation that will lead to a new treatment.

Ann.

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My mom was diagnosed Nov 2018 with vaginal melanoma with metastasis to lymph nodes, been told its mucosal and the most agressive she started Opdivo in feb and continuing unitl last week PET/CT found two spots on the liver,
Doc ( a melanoma specilalist ) says he is confused if it is melanoma or not, He said it could be an infection ( which he doubts as her blood work is normal) or a blood clot.

She has done very well on Nivo and Doc said he planned to stop the nivo if these two new spots woudnt have shown up ( What does that mean ? Would that be a NED status or stable status )
I am still confused that the size of lymph node is same , SUV uptake is same as 6 months ago but biopsy is negative.
Is the nivo working or not , Is her disease progressing with two more spots on the liver ?

Has anyone seen a blod clot on the liver in PET ?

HER PER Results
Index lesions:

1. Right axillary node: 0.7 cm in short axis (series 6 image 78) with a maximum SUV of 3.4, previously 0.8 cm in short axis with a maximum SUV of 5.8.
2. Right inguinal node: 1.1 cm in short axis (series 6 image 414) without hypermetabolism, previously 1.1 cm in short axis with a FDG avidity.
3. Left external iliac node: 1.1 cm in short axis (series 6 image 385) with a maximum SUV of 6.5, previously 1.1 cm in short axis with a maximum SUV of 8.2.
4. Right external iliac node: 0.8 cm in short axis (series 6 image 398) with a maximum SUV of 4.6, previously 0.8 cm in short axis with a maximum SUV of 6.1

NEW LESIONS:
1. New, peripherally enhancing segment VII hepatic lesion: 1.7 x 1.4 cm (series 6 image 162) with maximum SUV of 11.1, previously not visualized.

2. 1.3 x 1.1 cm hepatic segment 8 (image 174, series 6) segment VIII with peripheral enhancement, though without clear FDG uptake above background

Lymph nodes: Index nodes as described above. Additional hypermetabolic left inguinal lymph node is not significantly changed in size or FDG avidity when compared to prior.
Lungs: No metastases.
Abdominal and pelvic organs: Index lesion as described above.
Bones: No metastases.
Other: No metastases.

Non-oncologic findings:

Brain: Unremarkable, symmetric, FDG uptake is seen throughout the cortical gray matter, basal ganglia and the cerebellum. No mass effect. While these images appear within normal limits, MRI is recommended to rule out intracranial and/or skull base metastases if clinically indicated.

Neck: Otherwise unremarkable.

Chest: Trace bibasilar dependent atelectasis. Otherwise unremarkable.

Abdomen/Pelvis: Colonic diverticulosis without diverticulitis. Otherwise unremarkable.

Musculoskeletal: Otherwise unremarkable.

IMPRESSION:
At least 2 new hepatic lesions with the larger lesion in hepatic segment 7 demonstrating focal FDG uptake, concerning for new hepatic metastasis. Otherwise, no significant interval change in size or FDG avidity of previously indexed lesions as described above.

This study was reviewed by Dr. Spencer Behr of Nuclear Medicine and Abdominal Imaging

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NewEra's picture
Replies 6
Last reply 8/21/2019 - 6:13am

I'm on my Eighth Day in the hospital due to severe colitis after my second ipi/nivo injection.

Team of Kaiser Drs are NOT mel specialists, (insert rant re: KP incompetence here) and are treating me as if I had Chrones/colitus, and not an immuno therapy adverse event. Trying different doses of prednisone and anti diarrheals. I have refused another med change, and am insisting the follow the protocol, which is infliximab... an immuno surpressant.

Wondering if anyone else has experienced this, and if so, did the infliximab work on the colitis? Did it counteract the ipi/nivo and prevent it from getting at the tumors? My reaction has excluded me from continuing immuno sessions, so Im not sure if it is good to counter what I did get. Genetic testing for BRAF is due back next week.

Any input welcome.

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NZ Melanoma's picture
Replies 5
Last reply 8/20/2019 - 10:24pm

Hello all, first time poster.

My mum was diagnosed with Melanoma stage 4 about 6 weeks ago after receiving an x-ray to find out why she was experiencing a pain in her side. It turned out to be a 10cm tumor in the right lung with biopsy confirmed as melanoma not BRAF positive. A subsequent PET scan identified a small mass on the other lung and a small spot on the brain.

In the past 4 weeks mum has declined rapidly in alot of pain requiring hospitalization and is on a pump for the pain, she is also struggling more and more to breathe that most exercise makes her sore and fatigued. She began treatment with Nivolumab two weeks ago but seems to be continuing to degrade and we have a meeting tomorrow to assess her continuing. The biggest issue seems to be the shear size of the tumor on the one lung causing all the nasty symptoms.

Both mum and I would like to continue the treatment if there is even a small chance of potential improvement as she feels at 59 there is still lots to do. She seems to tolerate the treatment itself fine aside from the lung symptoms of the tumor. I am not sure what to do and am concerned the doctors may choose not to continue with treatment?

I would love to hear any thoughts, Thank you in advance.

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bdh0525's picture
Replies 2
Last reply 8/19/2019 - 8:08am
Replies by: marta010, Bubbles

My husband was just switched over to braftovi/mektovi after a hospital stay for large pleural effusion... does anyone have advice on this combo? Also, his oncologist is interested in continuing him on opdivo at the same time at the braftovi/mektovi but I cant seem to find much info on this? Thanks!

bdh

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Gene_S's picture
Replies 3
Last reply 8/20/2019 - 3:53pm

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/20/2019 - 8:35pm

Hello

I noticed this and thought I would share for discussion and interest. It is a study happening in London, Ontario about the use of fecal transplants to boost the immune systems for patients with melanoma undergoing immunotherapy. The idea is that with a boosted immune system that immunotherapy may work better.

https://lfpress.com/news/local-news/researchers-seeking-poop-donors-for-...

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