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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fedupnurse67's picture
Replies 1
Last reply 12/20/2019 - 12:08pm
Replies by: MichelleRHG

Hi everyone, completed my yervoy/opdivo treatments a couple weeks ago. Next week I start just the opdivo treatment. Have lab work done prior to every treatment. Just trying to figure out what the TSH level means. After the first treatment it was normal, the for 2 months is was way below normal, now it is above normal. Had a free T3 and T4 done twice. T3 was high and T4 was low, the next time they were both normal or a point away. I don't understand the correlation between the TSH and the free T3 & T4. I thought once it went down, it would stay there? When should I worry about my thyroid not working at all? Ha

Donna

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October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

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Anonymous's picture
Replies 12
Last reply 12/24/2019 - 10:10pm
Replies by: MelMel, Anonymous, HeidiZ, Edwin, lkb

Hello just wondering what a recurrence in a clnd scar would look like and feel like.

I had a tetanus shot 10 days ago and the nurse gave me a shot in my clnd arm. (Kind of frustrated with that) About 6 days later the site of my injection still hurt and then I felt a little raised patch right on my clnd. I cant see anything. It just looks like skin the size of a quarter with fluid underneath that is a little hard in some spots. Where its inflamed it's not a different color from the rest. That night I was examining it and it started leaking blood so I squeezed it, blood came out and it got pretty soft. It has since refilled but alot smaller and semi hard in a little spot. It also is smaller then it was sunday.

Can melanoma recurrence be squeezed out or is it rock hard? Does this sound like anything anybody has had before?

Thank you for your time

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Anonymous's picture
Replies 7
Last reply 1/12/2020 - 12:00am
Replies by: Sharon93065, MelMel, Edwin, lkb, Anonymous, Bubbles

Hi All... my name is Ryan. My father was recently diagnosed with Stage IV Ocular Melanoma Cancer. He had ocular melanoma (tumor on his optic nerve) 10 years ago, which he was receiving monthly treatment for since then. His tumor went away, and his eyesight was restored. Everything was more or less fine for the past 10 years. Fast forward until two months ago, my father started showing signs that something was wrong. Loss of appetite, distended stomach, discomfort. His stomach was filling with a fluid as a result of the melanoma (tumors irritating his omentem, producing fluids). As it stands, the melanoma has now metastasized in this omentem (stomach) area. PET / MRI scans don't show it anywhere else.

He's started Yervoy / Opdivo treatment about 2 weeks ago. He hasn't shown common side effects like diarrhea or rashes. However, his stomach is still in a lot of discomfort, feels full a lot, very small appetite, insomnia and nausea. How long does it take for people normally to see results from this treatment? And can anyone else relate to these symptoms? He's prescribed opioids right now to alleviate the discomfort and help him sleep, however I am not a big fan of him using those. Also on an anti-nausea pill. Eating very little. Can anyone relate? Looking for any tips or insight.

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sister of patient's picture
Replies 3
Last reply 12/19/2019 - 8:40am

Hi all - Want to say first that my heart goes out to everyone on here - mel warriors, caregivers and families - struggling with new dxs and/or ongoing treatment, especially at this time of year!!

Second - wanted to update my sister's situation to see if anyone out there has any info that can shed a light:
- A couple of months ago a brain MRI detected an osseous (bone) lesion measuring 6x4x4 on the inside of her skull in the right frontal lobe. Her brain was/is clear - it's just in the skull bone.
- Her reg. scheduled Thoracic CT had also been completed and it was absolutely clear - no sign of mel anywhere else.
- Onc ordered a bone scan - that came back as "inconclusive" on the FL skull lesion but detected a 2nd one too - it's on the back of the skull, very small, totally inaccessible and the report says (allegedly, I don't have a copy of it) that it's so remote and so small it's NOT even suspect of being a met.
- The bone scan also showed there are NO OTHER METS anywhere - spine, ribs, etc. - all clear.
- Onc ordered a CT scan of just the skull and referred all to a neurosurgeon to make biopsy decisions
- saw neurosurgeon - he confirmed he's not concerned about the 2nd site, also stated that FL growth is now 7 x 3 (?? - changing shape??) and has now ordered a PET scan and wants all other scans repeated in the next 4 - 6 weeks (MRI, bone scan and CT)
- he's also set to biopsy the FL growth and will do so by removing the whole section of her skull that's affected - with a 3mm clear margin

So ... it was alot to digest with still very few real answers. My take/questions on this is:

- this biopsy procedure sounds like a WLE to the skull - are we correct to assume this??? - we kinda thought/hoped they would maybe just drill in there a ways and take a little piece to biopsy
- is he doing the PET to decide if this really is a cancerous growth or not? If it's not mel, what the heck is it??? I hope the PET is conclusive!!!
- like last post - has anyone out there dealt with a recurrence in this area only??

At this point, we don't know that this is a recurrence - it appears that NED is holding everywhere else in her body - but it also appears that she's soon going to lose a good chunk of her forehead and she's scared to death!!! If anyone has any information to add, we'd really appreciate it.

Thank you. Peace and love to all!!!!

Barb

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marta010's picture
Replies 4
Last reply 12/27/2019 - 2:23pm
Replies by: Tracyyy, Bubbles, marta010

Need help understanding the difference in these terms. My husband, Larry , had a PET/CT scan in November which identified FDG avid spots in his spleen, deemed suspicious for metastatic disease. He had a follow up CT on Monday and the report now reads "unchanged hypoattenuating lesions in the spleen, which remain suspicious for metastatic disease, though treatment related sarcoidosis-like reaction is a consideration as well. Notably, these were FDG avid on PET/CT 11/4/2019." He has a clinic appt tomorrow and expect we'll find out - just want to have some education prior. Thanks.

Ann

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jdembroski's picture
Replies 4
Last reply 12/18/2019 - 9:54am
Replies by: jdembroski, Hitchens, Becky

Hi! I have been on this board and website in the past when I was going through my treatment, and I am finally ready to join as it was IMMENSELY helpful for me :)

If you read my information on my page, it'll give all the details of my hx and dx and whatnot, but I had Stage IIIA melanoma a few years ago and went through Interferon and whatnot (I am 24 now, so about 20/21 when I went through treatment, etc.).

I was just wanting to reach out to see if anyone has had the (unfortunate) experience of acquiring a secondary cancer of Lymphoma post melanoma and treatment? I have had a node in the right side of my neck (I think one of the jugulodigastric nodes) that has been swollen for months and months and I am finally going in January early (new job = new insurance effective Jan. 1, so had to wait) for a CT scan per my oncologist after I explained my issues. I have been extremely fatigued, no other symptoms of cold (aside from fatigue), some night sweats which is super abnormal for me, and the lymph node has grown and is immovable and painless. Obviously I am sure you can all understand my concern even if it is just an infection! But just wanted to see if anyone has any insight or experience on secondary cancers, specifically Lymphoma, after having melanoma.

Any insight is greatly appreciated!!

Kindly, Julia

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Donna C's picture
Replies 11
Last reply 12/18/2019 - 10:44am

Looking for any help with giving Tafinlar and Mekinist Targeted drugs through a G-tube feeding tube. We are aware that they are supposed to be given on an empty stomach as well as not crushed. Pharmacist at hospital and doctor are aware that we are crushing and giving with a tablespoon of applesauce through the tube. My concern is that they aren't effective like this OR harmful? Has anyone any insight or experience?

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jennifer83's picture
Replies 8
Last reply 12/17/2019 - 2:42pm

Hello! I just got a notice that my BRAF testing results are in and was able to read through the 7-page report, but not able to understand it well. I have a call into the doc to see if he can explain, but he's not in the office until Wednesday. Is anyone here particularly ok with reading these kind of results? I'm so curious if I'm BRAF + or -. My initial reading makes me thing it's negative, but I don't know! If you don't mind taking a look, email me at jennnleonard@gmail.com and I'll forward it to you! (Jennn has 3 n's in that email). Thank you!

Jennifer

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FurMama311's picture
Replies 4
Last reply 12/17/2019 - 1:32pm
Replies by: MMH, JudiAU, lindy303, FurMama311

Hello again!
I am two days out from my procedures at Emory and I was totally fine and prepared for it until I woke up this morning in a panic. I know the procedure will be fine, I am just getting overly stressed because my brain likes to play tricks on me. I am set to have SLNB in my groin and WLE of my thigh on 12/18. I know that I have the best doctors available to me at Emory Winship, but I still just can’t get it out of my head that this just going to be terrible! I can’t get the “inevitable impending doom” out of my thoughts. I think is probably due to other things that are not normal going on with my body, like excessive bleeding when using the restroom. I had a colonoscopy about three years ago where they removed several “precancerous” polyps. I just don’t want to tackle more doctors appointments right now until I have gotten through the ones I already have in place with my melanoma/atypical spitzoid stuff.
Anyways, not sure why I am posting. I guess maybe I just needed somewhere to vent and freak out a little bit without it being directed to my family, they have all be super supportive but I just feel like I bog them down when I talk about anything that’s going on with me that is health related.

Wishing you all the best and happiest times with the holidays coming up!
Thank you for listening to me be a whiney baby.
Brittney

P.s.
Any tips would be appreciated for the healing process, I have gathered from reading others posts about the topic, that you can do things too quickly or too much and end up with a seroma. I would really like to not get one of those, but because I am overweight I probably will end up having one.
P.s.s.
Sorry I am all over the place, I’ve had a hard time this morning trying to get my brain to put things in the right order before they come out of my mouth (or fingers.. because I’m typing and not actually speaking lol)

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seholmes's picture
Replies 4
Last reply 12/16/2019 - 10:50pm
Replies by: seholmes, Bubbles, Linny

It will be 5 years since I was diagnosed with stage 3b nodular melanoma on December 29th. I am excited to hit this milestone but also anxious. I do try to live my life with not being over preoccupied with the worry of reoccurrence but at times it is hard. It will be a year since I finished chemotherapy for Breast Cancer on December 27th. It is still crazy to me that I have had 2 primary cancers and I am 45 years old. I did have genetic testing done. They completed a breast, melanoma and leukemia panel. In all they tested 54 genes and there is no genetic link. Which is great news for my children. One of my good friends who also was diagnosed with breast cancer just found out that she is now stage 4. She blames herself that she didn't go to the dr sooner but she only had some back pain and had been going to the chiropractor. How does one know if it is just a normal pain or pain from cancer?

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Gene_S's picture
Replies 5
Last reply 12/18/2019 - 8:56am
Nicky's picture
Replies 7
Last reply 12/19/2019 - 8:02pm

Hi everyone. It’s December again, another anniversary and a time of reflection. It’s been 19 years since first diagnosed Stage 3b melanoma and multiple melanomas thereafter. I am so grateful that there was a group like this to turn to through the good and the bad times over all those years, taking care of your mental health as well as physical health is half the battle. MPIP was the first forum I joined and I will never forget friends I made and Rest In Peace to the ones lost. For those newly diagnosed, there are long term survivors out there, they just don’t necessarily post as they are getting on with life so keep strong. I wish you all a merry Xmas and hopefully many more.

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Bill w's picture
Replies 5
Last reply 12/15/2019 - 10:55pm
Replies by: Anonymous, maryb-z, MelanomaMike, lkb, Bubbles

hi all. my husband recently diagnosed with metastatic melanoma. this seems to be from a melanoma he had removed surgically in 2013. he has a 3x4 cm. tumor in his lower left lung lobe and 2 lymph nodes up near his bronchial area. he is considering having the tumor and lymph nodes removed. he is also considering immunotherapy.
Have any of you had similar experience and if so, what worked for you? We do realize it will pop up somewhere else at some point
Thanks for your thoughts!

bill w

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mrhubahuba's picture
Replies 4
Last reply 12/15/2019 - 10:12pm
Replies by: seholmes, lkb, gopher38, Bubbles

Good news. After being diagnosed stage 4 10 weeks ago roughly with over 100 liver lesions and lung Mets, I just got new scan results.
I had been taking Mektovi/Braftovi for about 3 weeks total on and off during the 10 weeks due to high liver enzymes ( side effect of meds). When I didn't take the braf drugs I would take high doses of steroids to get enzymes down than restart. I also took tafinlar and mek for about 5 days but still same liver reaction. Despite theses hurdles which Dr Weber easily handled, all tumors decreased roughly 50% and some completely dissapeared. That's miraculous in my book and the best Christmas gift I could have hoped for. I figure I am halfway to where I want to be which is tumor free.
Plan is to stay on the Braf drugs for about 4 months and hopefully my liver enzymes will eventually cooperate than switch to the IPI/NIVO combo. Since I have become an autodidact in the field of melanoma (lol) that seems to be the route with best chance of durable response. If that doesn't work I could always go back to braf drugs.
I can't thank everyone on this site enough for sharing their stories. It's been immensely inspiring hearing people's struggles with this insidious disease and I wish you all Happy Holidays!

Cheers
John

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