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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mrhubahuba's picture
Replies 6
Last reply 10/17/2019 - 8:44pm

Hi everyone, this is my first post since I got diagnosed with stage 3c melanoma in March 2009 although I have emailed Celeste aka bubbles a couple of times while is an inspiration to us all here.
Anyway diagnosed 3/19, mole 8 mm removed with surrounding skin and 2 out of 3 sentinel lymph nodes removed anddiagnosed with Melanoma. I immediately went to NYU under the care of Dr. Jeffrey Weber who is an amazing doctor with great staff. He put me on monthly doses of opdivo and I had 2 scans which were clear, last one 7/29/2019. About 3 weeks ago I started feeling really severe pain which I thought was gallbladder and was checked into local hospital. Turns out melanoma spread to lungs and liver with over 100 lesions on liver, biggest tumor being 1 1/2" long and golf ball tumor on my back where original melanoma was.. Dr Weber immediately put me on IPI/opdivo combo and I was tested for BRAF Gene. Last week braf came back positive and next day (5 days ago) I was put on braftovi/Mektovi combo. Yesterday morning my golf ball size tumor was still on my back but woke up today and it was gone and my liver pain (which I was taking morphine for) was gone.
I don't know what this means but it can't be bad and I haven't taken morphine since last night. I guess my next LDH blood test will tell,my last LDH level was over 3000 which I took last week.
I am not really a forum type but felt the need to share something positive with the group. The posts here have been very inspiring and educational to me and I thank you all and wish you all luck!

Cheers
John

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sks2019's picture
Replies 7
Last reply 10/17/2019 - 6:35pm

Back here again as I see my mom struggling everyday since she started the combo. As I have been asking folks about their experiences about jaw aches , temporal and facial aches.
her doc prescribed her prednisone. She is prescribed 10mg daily. prednisone gives her energy to get herself out of bed but the jaw numbness stays.

Without the prednisone she cant get out of the bed. I have searched this forum to get information but I feel i get mixed responses.
How does prednisone impacts the combo drugs ? or does it impacts at all ? Should she try to avoid it if possible ? She says I can bear the pain if it helps to get the combo doing what it is supposed to do.
She doesnt want to interrupt the combo effectiveness with the prednisone.

thanks for reading this patiently and Hope GOD helps us all.

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/14/2019 - 12:16pm
Replies by: Lucygoose, jsparker

Hello all,

I am a 29 year old female with a one year old son. About 6 weeks ago I noticed in the shower that I had a soft lump sticking out of my anus. After getting out and looking in the mirror it looked like a white lump and it was soft/squishy to touch. I forgot about it for a few weeks because I didn’t feel it anymore but I also wasn’t checking for it. Then last week I felt it again in the shower and checked the mirror after I got out and this time it was very dark purple/blue. It usually only comes out in the shower or when sitting on the toilet sometimes but I can push it back in or if I leave it alone then it goes back in on it’s own. Sorry it tmi here but when looking in the mirror it I spread my anus anus with my hands, the inside of my anus is purple and I think I may see some spots of black at the bottom by the perineal (which is a where the squishy lump is). Of course I googled some pictures online and saw on similar to mine that had black spots and was Anorectal melanoma. I am now terrified after reading about it and the statistics. As I said before I have a one year old son so that’s what scares me the most. I have an appointment with a surgeon but can’t get in until this Friday and I think I am going to make myself sick and with worry all week. I know you are not doctors but if anyone could tell me how their anal melanoma presented that would be helpful. I have no bleeding at all even during bowel movements and no pain so far.

MR

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Suzi's picture
Replies 1
Last reply 10/13/2019 - 8:15pm
Replies by: Suzi

It's back! While going for my 3 year cancer free check up I got bad news. I had been in the hospital for asmatic bronchitis for 5 days then had my appointment with my oncologist, he saw a raised lymph node in my left deltoid and nodules in my lungs. Wanted to do another lung biopsy, had one a year age and was nothing. Was thinking it was from my bronchitis. I said how about a pet scan, we did it and he said they saw something in my brain maybe and needed an MRI. Well they saw 2 tumors 1 was 4cm and 1 2cm in my brain, 2 days later I was at university of Miami for consultation and they wouldn't let me leave! Surgery the next day. This has all happened so fast! Tuesday I get gamma knife radiation and then Immunotherapy.
I originally had melanoma on my shoulder and in lymph node in my armpit. So I am stage 4 now so scared for the future.

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Suzi's picture
Replies 18
Last reply 10/19/2019 - 7:28pm

It's back! While going for my 3 year cancer free check up I got bad news. I had been in the hospital for asmatic bronchitis for 5 days then had my appointment with my oncologist, he saw a raised lymph node in my left deltoid and nodules in my lungs. Wanted to do another lung biopsy, had one a year age and was nothing. Was thinking it was from my bronchitis. I said how about a pet scan, we did it and he said they saw something in my brain maybe and needed an MRI. Well they saw 2 tumors 1 was 4cm and 1 2cm in my brain, 2 days later I was at university of Miami for consultation and they wouldn't let me leave! Surgery the next day. This has all happened so fast! Tuesday I get gamma knife radiation and then Immunotherapy.
I originally had melanoma on my shoulder and in lymph node in my armpit. So I am stage 4 now so scared for the future.

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Josh Clarke's picture
Replies 1
Last reply 10/13/2019 - 1:31am
Replies by: MarkR

I am very sorry to take up anyone’s time as I do not have a melanoma diagnosis, but I do have a few questions.

First, some of my history:

I am a 36 year old male and I have been in remission from Hodgkin lymphoma for over 4 years. Right after I finished treatment (chemo) I became very vigilant for any type of cancer. I photographed my back because I have over 50 moles just on my back alone. I saw my primary doctor. She noted a few moles that were at the max for “normal” size. She then had me come back a few months later to look for any changes. She said all looked good. This was 4 years ago.

This week I decided to look at the picture of my back from 4 years ago and compare it to now. There are some new small spots (less than 1mm) and there are some previously small spots that seem to be larger now (maybe 3 or 4mm). With my history I saw my doctor the next day. She took some pictures and agreed some spots do look larger than before. She referred me to a dermatologist. My appointment is 3 weeks away. I’ve searched the internet (I know, bad idea) and I can’t really find any info that says moles can grow for normal reasons. The moles are mostly symmetrical with normal borders. The only real difference is that they are bigger. I’m in what I call the “wait and worry” stage until my appointment arrives. I have had mild headaches for the past 2 weeks, but they seem to originate from my temples so I think I may be clenching my jaw unknowingly. I’ve also started having itches, pain, etc., but I’ve been down this road before with my lymphoma. I know how the mind can make up all kinds of things once we start worrying. I will add that in the last few weeks I have had multiple blood tests and a CT scan as part of my lymphoma follow up and all is normal. This has given me some reassurance that IF it is melanoma, it is most likely early.

I am the kind of person that loves to learn as much as I can about cancer. Any info, advice, stories from users here would be awesome. Thanks for taking the time to read this. I hope everyone on here is in the best place they can be on their journey.

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Hanaln's picture
Replies 6
Last reply 10/15/2019 - 10:20pm

My husband was diagnosed with stage 4 melanoma in April of this year. We had always planned to have our children close together and now our first is 13 months old and I’m itching to start trying for another to keep them close in age. However, I see the other side of how we have only made it through almost 6 months of treatment. Thankfully no more cancer showed up on the first 3 month scan and my husband has had no side effects from the immunotherapy. Would it be selfish to start trying for another baby now, knowing that he isn’t out of the woods yet? I don’t want to plan our lives according to what may or may not happen with his cancer but also don’t want to be irresponsible. I hope this doesn’t come off the wrong way, but becoming parents has brought us closer together and I feel that it is important to keep living the way we wanted to as long as we can. Does anyone have an experience they can share? Thanks!

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gmschmidt's picture
Replies 7
Last reply 10/13/2019 - 8:59am

Has anyone who has had a Lymph Node Dissection had any lumpy white discharge in their drainage tube?

My husband had surgery 9 days ago and each day the discharge has been regular light red fluid as we expected. Yesterday he had a low fever, which is gone today, but the discharge going through his tube all day looks like cottage cheese. We called the surgeon and his nurse had us email a picture of what it looked like. She emailed back and said it's doesn't look concerning, but didn't say much else. Nothing I have read says anything about this type of discharge.

Is there anyone here that had the surgery had a similar experience. The surgeon has a very good reputation so I'm sure his nurse is more then qualified, it just seems weird.

Thank you!

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Notesforthelittles's picture
Replies 4
Last reply 10/11/2019 - 11:43pm

I had a flat mole for years, that began to change a year ago. My health has greatly declined in other areas so I did not pursue a dr visit for the mole. In the last 3 months, it had begun to elevate and itch deep under the tissue. It developed something like a pore in the center and a scab.
I finally went in to the dermatology office and he ordered a biopsy and mentioned mm vs nm to his nurse. Malignant melanoma vs nodular melanoma?
Anyway, this is the biopsy site now. I have 2 concerns:

1) It appears where the “pore” was has a root that remained when the rest was removed.
2) I can’t seem to find info on whether this is normal or a sign of malignancy.
I know we aren’t doctors, but if any of you have similar pictures or experiences, I would love to hear about them. Good or bad. I would just like to prepare my heart.

Can’t quite figure out how to add the photo from my phone. Will try to post in comments.

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ShellyGraham's picture
Replies 11
Last reply 10/27/2019 - 7:22am

My latest mri showed 15 tiny brain mets, my doctor mentioned whole brain radiation, I’m terrified of this procedure. My question is can they do a different radiation as the gamma knife or the srs? Also going to be starting keytruda in a few weeks. Was taking taf/mek which has cleared lung and most of my liver mets. Any advice is so much appreciated.

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lkb's picture
Replies 5
Last reply 10/11/2019 - 6:04pm
Replies by: lkb, Bubbles, CynthiaLee, Linny

Hello MelPeeps! Today I got the results from my latest PETCT and MRI scans. Will probably hear from my doc Monday, but in the meantime:
MRI: Abnormal right level 2B lymph node measuring 10 mm, likely representing nodal metastatic disease
PETCT: - Right level 2B/3 node: Resolved. Previously 4 mm with SUV max 5.3.
Not sure how a tumor can be both resolved and bigger, unless it means dead tissue.

Anyone had an experience like this/have an idea?

Current treatment is Pembro plus IL-12 injections followed by electroporation. The 2B lesion has been there since December 2018.

With thanks,
Lisa

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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JudiAU's picture
Replies 6
Last reply 10/12/2019 - 1:31am
Replies by: AshleyS, JudiAU, doragsda, Lucas

I have had two rounds of the combo and the third is next week. I have a brain MRI the next week with follow up with my original neurosurgeon. I usually have 6 months and this is 3 mo. He has talked to my oncologist quite a lot. They originally started with a surgery plan but when they found the lung Mets they switched to drugs first.

I’ve been tired but that is really it. None of the horrible side effects that are talked about. I expected to look like an albino giraffe with no bowel by this point. I read several times that a stronger reaction to the combo was positive. And now I am freaking out that I am tolerating it so well. Is it just to soon to judge?

Still no symptoms from the Mets. I have had increased unpleasant sensation from the severe nerve damage but no other neurological symptoms. I had radiation to the original tumor radiatiated about 8 months ago and 3 months ago they said it was stable.

I have very very minor issues but I don’t think any are related. Like I have a tiny bit of what looks like seasonal excema that I get ever winter because I forget to moisturize. Or I have three circular dots that look like mild ringworm that I’ve picked from husbands towel before. Mild cold symptoms with my 10 up has been home and sick.

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sks2019's picture
Replies 8
Last reply 10/12/2019 - 12:41pm

Hi, My post might seem redundant but I am really struggling to understand what is going on with my mom. She had two doses of ipi/nivo so far and is experiencing headaches that comes after 9 pm and are gone by 9 am without any medicines. She now doesnt wants to be awake at night so she takes a tylenol when it starts but that just reduces the intensity of the pain and by morning she is all fine.

She also has jaw aches and unable to chew food properly. I have been searching all over to see if this a combo side effect or she is having any new development in jaw or in brain.
So far i dont see any such side effect documented.

Can someone please help to answer if they have experienced such cluster headaches that last 12 hour and jaw issues ?

Bubbles ?

Thank you.

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Summer S.'s picture
Replies 8
Last reply 10/11/2019 - 8:24pm

Hey Everybody,

Hope you are all doing well and staying strong!

After exactly 10 months of paper work, we finally received the famous combo treatment Tafinlar/Mek. It arrived just in time as we have just witnessed a major progression on Zelboraf. I know that sounds a lot like 2012 for you guys, but this is as fashionable as it gets for Melanoma treatments where we live.

So mama is starting with the new combo next Tuesday, and also doing couple of radiotherapy sessions to hopefully conquer the newly developed Mets in the bone.

I know many of you have been through this combo, so experiences, tips and tricks, motivation will be awesome!

I love you,
S.

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