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.

Expand/ Collapse Topic
 
Replies By
View Topic
maryb-z's picture
Replies 5
Last reply 4/25/2019 - 10:20am

Really, anyone who has experience with Opdivo and severe joint pains and swelling. Both my melanoma specialist and local oncologist are adamant that prednisone, even low dose will decrease efficacy of Opdivo. I swear this topic came up on this board before. I bet Celeste has some hard data I can use as leverage. I'm at the half way mark and melanoma specialist wants me to discontinue treatment if I am in so much pain. Ugh!

No One Fights Alone

Login or register to post replies.

Jsneathen21's picture
Replies 5
Last reply 5/18/2019 - 3:40pm

Hello

just wondering if anyone has been through this immunotherapy? I was considering doing this treatment. Was wanting to hear about what others have went through with it 

thanks 

Login or register to post replies.

regwash's picture
Replies 19
Last reply 5/6/2019 - 12:34pm

Hi all, my name is Regina and I’m new to all this. I’m 30, married with 2 daughters ages 6 and 3 months. Just wanted to share my story and ask a question or 2. 

So I had a “weird looking” mole on my right shoulder blade/top of my back for maybe 6 months, maybe longer than that. I’m not sure exactly how long it was there. I gave birth to my second daughter in January and I know I had it WHILE I was pregnant with her, just not sure if it showed up before or during pregnancy. My husband had made comments about it looking odd and I knew it was there, just never felt an urgency to get it checked out. 

Sunday March 24 of this year, we had just finished a 3 week long fast with our church and I felt an overwhelming nagging that I needed to get this mole checked out ASAP. So I told my husband I was going to make an appointment with a dermatologist he had seen. I called the next day, Monday and I had an appointment that Thursday, March 28. 

I told the dermatologist I wanted a full skin check because I have a lot of freckles and moles all over and I had one or two I was concerned about. Showed her one on my chest that looked odd to me and she said it was normal and then told her I was worried about the one on my back and she said, “Yes that mole is worrying to me too.” She did a biopsy and took the whole thing, and told me she would call me with the results on Wednesday. 

She called me with the results on Wednesday April 3 and confirmed that the mole was a melanoma. She told me she was referring me to a surgical oncologist, who would do a wide local excision and decide whether or not to do a sentinel lymph node biopsy. My appointment with the surgical oncologist was supposed to be Tuesday April 9. They called me the day before and said they had to reschedule for the following Tuesday. This made me extremely upset and I asked the question, “isn’t this kind of a time sensitive situation? Shouldn’t we not wait on this kind of thing?” The surgeon’s office assured me she had seen my pathology report and determined it was okay to wait a week for the consultation. I had also called the dermatologist to get her opinion on the matter - she also assured me it was okay to wait a week. 

I had my consultation with the surgical oncologist last Tuesday, April 16. I found out the details of my melanoma - malignant, stage 1b, superficial spreading, 0.92 mm Breslow thickness, Clark’s 2, mitoses less than 1, no ulceration. 

My sentinel lymph node biopsy and wide local excision is scheduled for next Monday, April 29. I think I’m more nervous to find out whether or not this has spread to my lymph nodes than anything else. I’m a little nervous about going under anesthesia. 

if you’ve read this far, thanks for reading my novel. I think my only question so far is, with my thickness of 0.92, is there a high chance it may have spread to my lymph nodes? The surgical oncologist said the biopsy is not normally done for a stage 1, but because the thickness puts me right on the cusp, “better safe than sorry” I guess. 

again, thanks for reading. Looking forward to the support I can receive here. If you feel led to share, please tell me how I can pray for you specifically (besides the obvious, complete healing of this disease). ❤️-R

Login or register to post replies.

jen.bren's picture
Replies 8
Last reply 5/8/2019 - 9:00pm

Thank you all for your prayers and hope.

The nodule in my calf was beningn. Doc called it a fatty tumor. It was very small, hard to find somedays. When my leg would swell from lymephedema, then you could feel it much more.

Thank you so much for your thoughts and support.

Prayers and love to you guys as you navigate this journey.

Jen

 

Login or register to post replies.

iskitwo's picture
Replies 7
Last reply 4/23/2019 - 7:25pm

So after almost of a year of Opdivo and positive results I had one stubborn met show up on the iliac (upper part of hip bone). I then had 5 rounds of radiation and waited the 6-8 weeks to find out that the radiation didn't help and the met has doubled in size since late Dec. My doctor is recommending opdivo + yervoy. I have done very well on opdivo with minimal side effects. I am hoping for minimal side effects with the new treatment but know the reality is that the chance of side effect are much higher. My CT scans stated Continued increase in size of metastasis with extraosseous necrotic tumor now 4.6 cm x 4.4cm previously 2.9cm x 1.6cm. Wondering about the statement "extraosseous necrotic"?? Thanks for any insight!

Thanks,

Missy

Login or register to post replies.

Dympsd's picture
Replies 1
Last reply 4/23/2019 - 11:44am
Replies by: Bubbles

Hello all

Sometimes I feel like there are not enough "stages" to adequately cover the variation of mets for melanoma patients. My husband is stage IV but the mets are spread throughout his body ( lung, pancreas,liver, kidney,bone), the main bulk in his brain. He is amazing. Recently just decreased Braf/MEK combo due to debilitating side effects and although he cannot walk very well ( combo caused extreme joint pain which left him with residual left leg weakness) he is sleeping and eating great and enjoying getting around with a walking frame and wheelchair ( he is 53). We feel very lucky to have some pain free, nausea free time to spend with family. I am now hopeful we will have lots of time with adjusted treatments and am very grateful for this support group that keeps me sane when things are bad in the middle of the night and I feel alone. Its funny how this roller coaster takes you from feeling helpless and desperate to hopeful and then you worry about being too hopeful. Crazy right? Seriously Im going with hopeful. Well anyway thank you everyone for sharing your journey. I feel like every week I am getting use to a new norm but really hope this one lasts a bit longer as its a pleasant relatively symptom free period and I wish the same fr you on your journey to recovery.

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 4/23/2019 - 5:48pm
Replies by: Lucas, lkb, ed williams

Covers many topics, related more to stage 3 and 4 patients, some pretty interesting facts on Pd-L1 status and tumor micro environment, hot and cold tumors and managing brain mets as well as managing IRAE's. https://researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=0m0s

Login or register to post replies.

kb9718's picture
Replies 8
Last reply 4/25/2019 - 3:02pm
Replies by: Anonymous, ed williams

I was just wondering what the mitotic rate meant? Mine is 8 which seems really high and Im not to sure what to think of it. If it is something to worry about alot in the future. Hope everyone is doing well and wishing everyone all the best 

kb

Login or register to post replies.

chrispl1974's picture
Replies 6
Last reply 4/22/2019 - 1:17pm

Hi,

I signed up in January after having been diagnosed with Melanoma. As you can all imagine, this came as a big surprise, but the doctors are optimistic. Me being cautious by nature, I sometimes wonder if this is a standard approach by doctors to put your mind at ease, or if I can really believe when they say " Treatments have advanced and we caught it "RELATIVELY" early"...

Thanks in advance for your advise and input. Here some data on my case:

Diagnosed in January 2019. I had a small 4-5 mm spot on my thigh for around 1.5 years but neglected it.

My dermatologist did an excision and results were:

Nodular Melanoma , Breslow depth 1.9mm , no ulceration, Mitotic rate 1, Clarl Level III

2 Weeks later they did an SLNB and WLE ,unfortunately both extracted lymph nodes had micrometastasis (the report does not show how large, but supcapsular invasion depth in one of them was 2mm in the other 0.5mm with only isolated cells).

Did MRT and CT etc. and all clear so I have been staged as IIIa   (T2a N2a).

Started in February with BRAF /MEK inhibitors (Tafinlar and Mekinist) since I am BRAF 600E positive.

Minor side effects and all good so far. 

Doctors tell me and I quote "This treatment will kill any remaining cancer cells".

I have been reading up and although the latest 4 year RFS numbers of Tafinlar - Mekinist for IIIa are impressive, please let me know what else I can do to improve the odds. I have changed my diet and also try to do some yoga. etc. 

Thanks for your help and take care


Login or register to post replies.

Lucygoose's picture
Replies 5
Last reply 4/23/2019 - 11:40am

Hi! 

I’ve had 2 rounds of ipi/VX15/2503 as neoadjuvant treatment for Stage 3B, primary unknown.  My scans are May 1 and neck dissection surgery May 6.  

My side effects are rash and fatigue. Bad fatigue - I’m getting more tests for that. Rash is responding to the steroid cream. 

The great news is the big lymph node in my neck that started this journey is noticeably smaller.   I know the scans are the definitive measurement but externally it is a dramatic difference.  

It’s a clinical trial so fingers crossed this is a good sign for all of us.  

I just couldn’t wait to share.  I’ll let you know what the scans show.  

I’m feeling hopeful!

Lucy

Lucy

Login or register to post replies.

jjk17's picture
Replies 12
Last reply 4/24/2019 - 10:20pm
Replies by: jjk17, Bubbles, Anonymous, TP35, Thisisnottheend, SOLE, AshleyS

Hello All!!

I have been MIA for a while, but I have still been getting on and keeping up with everyone's post as much as I can! I was reaching out to get some guidance/opinions!

I am still cancer free!! Scans have been clear since December 2017. Still going to Derm and Oncologist every 3 to 4 months for scans ect. My husband and I are throwing around the idea of adding to our family...But honestly I am scared to death. We have consulted with OB and Oncologist...Both have different opinions, but think it should be fine, but of course cant say one way or another...

Real quick run down on my history: Diagnosed in September 2017 Stage IIIC, ulcerated spot on upper inner thigh. Surgery and removal of two nodes. Biopsy report showed cancer cells in one of the nodes. Started immunotherapy in January 2018, Nivo. Stopped once for high liver functions. Restarted until September 2018, stopped end of September, kidney was failing due to Nivo. No immunotherapy since then and still clean scans.

Did pregnancy bring out melanoma...??? Million dollar question everyone wants to know! So here we are...do we try and something comes up during or after pregnancy,could it be worse or dare not to risk. I want to be around for my family.....

That's where we sit....What to do...

Login or register to post replies.

ErinATC's picture
Replies 9
Last reply 4/19/2019 - 4:07pm

Hey all.

The doctor proposed looking into TIL therapy in Toronto. Currently my friend is doing really well on his Braf/Mek drugs after having a partial response to IPI/NIVO. His cancer progressed in his bones after ipi/nivo while everything else shrank. Now he’s on to targeted where he’s feeling pretty good. Strong. Working out almost daily. He is stage 4, with tumors just about everywhere you can list, and they weren’t small. 

Brain tumors have completely cleared up with no surgery/radiation.

I can’t find much on TIL studies that are recent. He is 42 years old, and was in excellent health before this. 

It would mean relocating to Toronto for him, which is a big move. Can anyone tell me what timeline is on average? what about current success rates, and via what method? I see lots about high vs low dose. 

 

Any, and all info or personal experiences are appreciated.

 

Thank you in advance,

Login or register to post replies.

MMH's picture
Replies 2
Last reply 4/23/2019 - 6:22pm
Replies by: MMH, Anonymous

I have a new/changed mole about 4-6 inches from my original site. I had a .6mm spitzoid melanoma removed in August 2018. Today I was itchy and took a look and to my horror there is something there that looks an awful lot like my original melanoma. Pink/Brown/White and a little bit shiny. I am obviously panicked. I have contacted my dermatologist but I have not heard back and my imagination is racing. Any idea on how common recurrence near the original site is and what that means for my original 1a diagnosis? Does the spitzoid piece of the diagnosis matter?  Crushed.

MMH

MMH

Login or register to post replies.

Carlsbad317's picture
Replies 7
Last reply 4/19/2019 - 3:04pm

As a novice cancer patient and absorbing as much as I can with each new appointment, lab, and side effect can anyone help me or point me to a website about LDH levels. I keep reading that is how the cancer is tracked and my last lab said 271- which is up about 100 from a month ago.

 

Thank you.

Hanlon

Login or register to post replies.

jen.bren's picture
Replies 6
Last reply 4/20/2019 - 12:26pm

Well, today is the day I go in for the calf nodule to be removed. 

I can only hope and pray it is not another recurrence.

For now I will look forward to coming home and resting and finally being able to eat and drink.

Blessings to you all,

 

Jen

Login or register to post replies.

Pages