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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Sdmotorcop's picture
Replies 1
Last reply 10/17/2019 - 8:44am
Replies by: Bubbles

Hello Folks,
I was diagnosed 3C in May and have been on Nivo since June. I’ve been dealing with a couple of side effects so I’m thinking the Nivo is working. I’ve been reading about how immunotherapy takes the brakes off of our immune therapy for life which gives our bodies the ability to search and destroy the Mel.

My question is this (I apologize if it has been asked or covered before)... since our immune system is running full blast, would this help the body if confronted with another type of cancer (ie, prostate, leukemia)?

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Michael2.0's picture
Replies 8
Last reply 10/17/2019 - 10:46am

Hello everyone,
I've been lurking here for a week or so and have finally got the nerve to post. Weird how little things like this just affirm what you already know, yet they are still difficult to admit to and process. I was dx with stage IIIB malignant melanoma in late Aug. I had the primary site excised (rt. calf) and had three lymph nodes removed from my inguinal area. One showed microscopic amounts of cancer. That and the ulceration of my primary tumor set me at stage IIIb.
The following week I received a skin graft for my leg and did a PET Scan and brain MRI. Thank God both were negative. Last Thurs I began Keytruda as an adjuvant therapy.
This has been a very difficult month or so but I feel good. Ive lost 18lbs and have cut all sugar and processed food from my diet.
I feel kind of lost honestly. This waiting game for recurrence seems like it is going to be excruciating.
Anyway I do derive comfort from listening to the success stories and hope beyond hope someday I might have a success story of my own. If any of my experience can help others then feel free to ask.

Aloha,
Michael

Aloha, Michael

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ScaredPartner's picture
Replies 2
Last reply 10/17/2019 - 8:54am
Replies by: Bubbles, gopher38

Today was scan results day, and boy were we scared. My partner progressed after ipi/nivo (but only in the bones), And was switched to targeted about 10 months ago. Time has gone by so fast, and we know that this stuff seems to have an expiration date. In the last couple weeks he has had some major pain just below his knee in the bone. We were terrified the beast was back already.
Doctor came in to discuss results, and said everything looked great. All was stable, and brain Mets were gone.
We asked about the bone pain, and the doctor said “just how much have you been working out? You have a stress fracture!”
We laughed as the doctor tried to convince the addicted runner/cycler to just rest for a few weeks. Then questioned why the pain in elbows, and shoulders.
“You have arthritis. Congratulations, you’re getting old”
Now, at 42 we don’t really consider that old, but an old age diagnosis was exactly what we needed today.

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Baby_Girl's picture
Replies 1
Last reply 10/16/2019 - 11:35am
Replies by: Bubbles

So my infusion of Opdivo was canceled due to high liver numbers (ALT and AST) . These numbers have fluctuated over the last several months but have never prevented me from getting an infusion. I also got my PET/CT scan results that day and everything looked good.
I was wondering if the radiation/dye or whatever they injected in me for the PET/CT scan could have made my liver numbers increase? I had the scan the afternoon before they didn’t my blood word and when I was supposed to get my Opdivo infusion.
Has this happened to anyone else before?
They scheduled me to come back in two weeks for bloodwork again and if my numbers were down then would continue with treatment.

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JudiAU's picture
Replies 3
Last reply 10/16/2019 - 8:40am
Replies by: Hukill, marta010

So I posted before that I was worried about not having side effects. Now I have them but they don’t know what is.

I had those minor cold symptoms one night when I posted. No cold symptoms the next day thought ii was probably getting flu. I started developing a progressively harsh headache and having an occasional headache. On Saturday, my husband calls on call doc and they send me to hospital. They check me for all regular side effects a large variety, I have brain MRI (tumor grown) and Ct with contrast showing others have not.

The headache is most gone but I am developing very cyclical high fevers (104+) at least twice a day. They don’t have an answer other we think it is an immune response. My neurosurgeon want brain surgery Friday but my head must be clear.

Anyone have experience with this? Very frustrating.

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nasullivan's picture
Replies 1
Last reply 10/16/2019 - 12:08pm
Replies by: Julie in SoCal

Hello All,

So, my grandmother was diagnosed stage 4. She has had 2 ipi/nivo treatments. She is currently on predisone and had her second dose of remicade today. She has had a rash and collitis.

Nevertheless, oncology states that we are "just going to monitor her."

She may have had enough immunotherapy and we may not need to switch over to just NIVO (every 2 weeks for 2 years).

I thought after the (up to 4 combinations) - someone was put on nivo for up to 2 years until they reach toxicity or achieve disease stabilzation?

As it stands no - even if the collitis resolves - they are just monitoring because her tumors have shrunk (by about half - on average)? So no more treatment?

Someone help!

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Affected's picture
Replies 6
Last reply 10/17/2019 - 9:41am

Hi Everyone,

My husband is about to complete 2 weeks of 6 weeks of radiotherapy on his neck/head area after having had his parotid gland and tumor removed in July. Tomorrow he will be taking his second dose of adjuvant immunotherapy Nivo which he is scheduled to take for a year every 2 weeks. So far he has not had any visible side effects except some dry skin on the area that is getting the radiation. He is using 99,9% aloe vera gel to moisturize the area, and it is helping very much.

After closely following this forum, I get the impression that follow-up scans are done approximately 3 months after surgery. Should we be asking for a follow-up scan for my husband given that next week will be 3 months since the surgery was done? We have gotten over the shock and are feeling quite normal again, but I feel we still have to be vigilant since the mytotic rate (19) of the tumour was very high.

As always thank you very much to all who share on this forum.

Affected

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/16/2019 - 11:58am
Replies by: Julie in SoCal

Hi everyone. Im 28 years old, male.

I'll try to be brief. I had for a few weeks what I thought to be a mole, which initially started to hurt slightly, then became shiny and swollen. Then it got a bit darker and lately some black spots started growing into it (so it was two colored).

Today I saw the dermatologist and in an extremely quick manner he stated it was a seborrheic keratosis and he asked me if I wanted to get rid of it for aesthetic reasons, and I agreed (he burned it).

Now I got home and I started googling a bit and I'm getting slightly concerned. The doctor didnt ask any questions whatsoever, he just looked and diagnosed it.

To be brief my question is: now that the mole is gone, is there any way I can check if that was a melanoma?

Thanks a lot

f.

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mrhubahuba's picture
Replies 5
Last reply 10/16/2019 - 10:11pm

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 6
Last reply 10/14/2019 - 5:20pm

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 12
Last reply 10/15/2019 - 8:47pm
Replies by: Suzi, doragsda, Bubbles

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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