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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Christine.P's picture
Replies 7
Last reply 5/25/2017 - 10:59pm

I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year. 

At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is 
"slow" and Tak/Mek only stops progression for 10-11 months (in most people). 

I have 2 pressing questions/thoughts. 

1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow? 

2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part. 

I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)

So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better. 

It's so hard to know what to do. I hate this disease. 

Christine P. 

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Has anyone else experienced flu like symptoms prior to being diagnosed? My husband has been NED 10 1/2 years, MUP, 1 positive node, lymph node dissection only. Had a lump come up on the back of head that we were watching. Started running a fever 3 weeks ago and thought he had a bug. Noticed 2 more lumps pop up and made an appointment with family doc and melanoma doc. Tested for Lymes and Mono but negative. Treated with doxycycline just in case. Another lump popped up before we made it to oncologist. Biopsied 1 lump, lymph node positive for Mel. Still having awful flu like symptoms, fever, severe fatigue. Scans coming up on Wednesday and meet with docs again Thursday. Anyone else experienced this? I'm assuming it's caused by tumor formation? Thanks for any help!

Shannon B

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Christine.P's picture
Replies 7
Last reply 5/25/2017 - 8:37pm

I realized after I posted my last message that I should have used a more specific subject line so that those with Taf/Mek knowledge and experience would see it better. Here is my original post. I am wondering about the timing of the targeted therapy - is it better now when I have a low tumor burden or is it OK to wait until there is more progression? Thank you for your feedback.

Original post:

I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year.

At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is
"slow" and Tak/Mek only stops progression for 10-11 months (in most people).

I have 2 pressing questions/thoughts.

1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow?

2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part.

I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)

So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better.

It's so hard to know what to do. I hate this disease. 

Christine P. 

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Shannon B's picture
Replies 4
Last reply 5/25/2017 - 8:24pm

Hello all,

I haven't been here in years. My hubby was NED stage III November 2006 after a lymph node dissection. I stayed around here for a few years but found that I was staying worried all the time. We found out today that Willie's cancer has returned. We go next week for scans. He has an unknown primary. What's new as far as treatment these days.

Thanks for reading!

Shannon B

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D1983j's picture
Replies 2
Last reply 5/25/2017 - 6:52pm
Replies by: D1983j, Anonymous

I have had stage 1 a Mel a year ago. I worry a lot about bumps and moles but the anxiety gets a little better. I have a bump very small on my scalp and it's not red or growing. My husband checks my scalp often and says he doesn't even see it unless I make it red. I have been able to sort of scratch it off but I have really dry scalp anyways. It will bleed if I really scratch hard. I know I shouldn't but I thought it was a pimple or ingrown hair type thing. Now in saying all this my husband has told me that I was worried about it before my last apt in Feburary and my derm who checks me well didn't notice anything. Apparently I wasn't worried enough to ask at the time. My main worry is nodular melenoma and I'm pretty sure that wouldnt scratch off easy and it would be growing bigger fast which this hasn't. I've really had bumps or pimples on my scalp before and didn't think about it because I knew she was checking me and they didn't have characteristics but now I'm going into worry mode. Any help would be appreciated. I've read about sebacious cysts as well which I lean towards considering the time it's been there and how oily my scalp is there. Thanks for listening! This site has helped me a lot over this journey and I pray for anyone affected.

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Anonymous's picture
Anonymous
Replies 0

Question for those folks that have been on or are currently on Targeted Therapies. Have any of you developed AFib while on these drugs?  

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Anonymous's picture
Replies 10
Last reply 5/25/2017 - 3:22am
Replies by: tanusharma, Anonymous, jennunicorn, Janner, contributor

Hi All - I'm flipping out a little bit so any guidance/thoughts on this would be greatly appreciated :/

I have received a pathology report from my dermatologist and it has been recommended that I have my mole re-excised. The dermatologist would like to do 5mm margins and has mentioned going 5mm deep to the subcutaneous fat layer (I am not happy about this and would like to leave this layer alone...the cells are said to be in the epidermis and epidermis-dermis junction only so why go that deep? Too big of a margin to me). Please recognize, while I am not thrilled about the idea of a scar my concern is NOT stemming from cosmetic concerns and IS stemming from physiological concerns...I am a very active person and this is on the back of my left calf. I use my calf a lot with everything from 8 mile hikes to water rowing to running 5ks to using a versa climber, weight lifting, etc. I have a lot of anxiety and exercise is my everything.

I have read several horror stories online from wide local excisions of this type where people experienced permanent nerve damage, muscle damage, and basically an inability to be really active or train hard. I'm a 26-year-old female, very fair and pale, avoid the sun during the hours of 10-4 and wear sunscreen religiously. I also routinely wear long pants and even jackets in the car to avoid the sun. I'm miffed that I would have a "precancerous" atypical cell situation.

Basically...my question is two fold:

1) what if I decide not to re-excise this? what are the changes this remains benign?

and 2) would Mohs provide me with a better physiological outcome (I'm speaking with a Mohs surgeon next week but would like to hear from others here)? Or is there a way to specifically get my doctor to confirm that he will not cut into the subcutaneous fat layer or that he will stay in the epidermal and epidermal/dermal junction range in terms of depth?

Here is the pathology report, word for word:

Submitted is a single slide of shave biopsy material which shows a junctional melanocytic proliferation composed of slightly enlarged and hyperchromatic melanocytes located at the base of the junction as well as along sides of rete ridges. There are some single melanocytes within the spinous layer as well. There is a back-ground of a patchy lymphoid infiltrate that partially effaces the junction in some areas. The proliferation overall does not appear sharply circumscribed and extends to the lateral biopsy edge.

Diganosis: Skin, left calf, inflamed atypical junctional melanocytic proliferation, extending to a peripheral tissue edge.

Comment: Given the clinical diameter of a 7mm plaque, the findings are concerning for a junctional nevus with atypical melanocytic hyperplasia at least. A melanoma in-situ is not completely excluded. Deeper levels would be of value. Pending review, complete re-excision with appropriate clinical margins is recommended.

Addendum: Left calf - Recuts reveal areas of more severe cytologic atypia that is asymmetric and extends to the lateral margin. Diagnosis is amended to: Skin, left calf, junctional atypical melanocytic hyperplasia with adjacent nevus. Complete re-excision with appropriate margins is recommended.

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lisa joy's picture
Replies 15
Last reply 5/24/2017 - 2:02pm
Replies by: lisa joy, Anonymous, raun cesar, Joycem, Ed Williams

Hi - 

I just returned from my three month check up with my dermatologist. She told me about a new test for melanoma patients called DecisonDx (by Castle Biosciences Inc.). 

She explained that they send off my melanoma tissue to this lab to determine my risk for melanoma coming back? 

Has anyone ever heard of this test? She explained it was new. I'm not sure how this would change my treatment plan? 

Just wanted to know if anyone has heard of it or if they recommend it. Thank you!

 

Lisa, Stage 1A (one year ago); .75mm melanoma, -- I had WLE and one node removed and biopsy; I also had brain MRI and full body PET/CT scan.  --- all negative. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/24/2017 - 12:52pm
Replies by: judyk, jyc, mary1233, Anonymous

I have nasosinus mucosal melanoma.  I had surgery and radiation and have continued to have endoscopic surgery each time the pet and MRI show some growth so far it has stayed in my sinus area.  I am reluctant to have immunotherapy since it is in such a small spot. I may be running out of option. Immunotherapy seems to be for patients with advanced in other areas. It seems to help then but the research doesn't show anyone with 5 year survival with no evidence of disease. Has anyone have a good result with ipi or yervoy.  I don't have any of the genome no kit or for skin the braf that makes immunotherapy work better. Anyone even have muscosal melanoma. I am so discouraged

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Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 5/24/2017 - 12:31pm

Hi Everyone.

Has anyone had surgery to remove brain mets?  What was your experience like?  I had a fast growing met removed on March 24th which left me with loss of feeling in my right leg and foot.  The MRI at ten days post surgery showed regrowth.Since then I've started back on Nivolumab coupled with radiation.  At my follow up the brain surgeon mentioned that he feels if he hadn't removed the met I would have lost the use of my right leg and foot.  

I'm waiting for my next MRI to see if the radiation/nivo combo are working on the regrowth and if there are any new mets.  This met popped up while I was taking a break from the Ipi/Nivo combo treatment due to hepatitis.  Aside from the hepatitis the treatment had been working well and many tumors had shrunk.  I just had my 4th Nivo only infusion yesterday and aside from high TSH it looks like I'm tolerating the treatment well.  Abdominal tumors are getting smaller or not getting bigger but progress has slowed way down.  

My 5 year old has started asking me why I have a big bald spot and why I'm still sick.  She thinks I should be better already (it's been 7 months).  I told her the medicine made my hair fall out but she doesn't understand how that is possible.  

Thanks,

Jennifer

 

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AliCat61's picture
Replies 4
Last reply 5/24/2017 - 12:06pm
Replies by: Bubbles, marta010, AliCat61

We had a HORRIBLE experience at the hospital yesterday. If you want details you can visit https://www.caringbridge.org/visit/roychappell/journal and read the post from the 22nd, including the comment. I woke up feeling like a Mack truck had hit me and I know that however bad I feel, Roy is probably feeling 20 times worse. I have channeled my anger appropriately, to the proper people in a factual manner and I have been assured by the Quality Director and Risk Manager of the Hospital that she will "open an investigation into what happened to you and your husband yesterday.  I will respond to you in writing with the results of the investigation and any needed changes to the processes needed.  Thank you for your feedback.  We cannot make changes unless we are aware of the concerns and issues. Thanks again for sharing your experience with us.". So I feel that I have been constructive, hopefully preventing something like this from happening to others in the future, but I'm still just plain ole MAD. They stole a day of our lives from us that we can never get back. I'm going to let myself cry just a little, then I'm going to go and hold my husband and snuggle with him and be grateful for today. I might even break the sugar ban and have some Mint Chocolate Chip ice cream :). I have a feeling that this experience is going to be a little tough to let go of though, Anyone have any suggestions? I have to hold so much in for my husband's sake that I feel like I am going to self-implode one of these days. I tell myself to put my big girl panties on, because I KNOW that so many of you are in much worse positions with young children, while our children are grown and my husband is 70 and has had a good life. I KNOW that but I also know that what happened yesterday didn't have to happen and I am just plain ANGRY on behalf of every hospital patient ever.  If you are a praying person, please pray for me to find the strength to be a better, stronger person and let this go. If you're not into prayer, good vibes and positive thoughts are appreciated too. Love and hugs to all of you who have to go through on this awful journey. 

Alison - wife of Roy, Stage IV Metastatic Melanoma

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sami210's picture
Replies 4
Last reply 5/24/2017 - 11:24am
Replies by: sami210, Bubbles, betsyl

Hi All, 

I am a long time lurker first time brave enough to post. I'm at stage 4 patient from the UK. I am BRAF positive. I was first diagnosed in 2009 due to a mole on my left arm. It was removed with clear margins. In 2013 I found a lump under my left arm which turned out to be melanoma stage 3b one node positive. Earlier this year after a routine CT scan they found Melanoma in two lymph nodes on my chest.

I began Immunotherapy on the 21st March. I was hospitalised after the first treatment due to high temperature and chest inflammation and a bad cough, steroids eventually sorted me out. After the third treatment I had Uveitis and treatment was discontinued. The Consultant ordered a CT scan the results shows one of the lymph nodes looked slightly larger, he thinks due to inflammation. Also one spot on my lung 2mm in size which they are unconcearned about as he thinks could be anything, but given my medical history I'm worried.  Also my thyroid is damaged. I've an appointment with a specialist about it next week. 

My Consultant had decided not to give me the next infusion of Ipi and move straight into the maintenance drug in the hope that I will respond. 

I have to small children 10 and 5 and I'm left devastated my today's news I had put all my hopes on this treatment working.

I suppose my question to you long term warriors is what would you do now?

Sam xxx  

 

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landlover's picture
Replies 4
Last reply 5/24/2017 - 6:00am

I have stage 4, mets to lungs.  Started Ipi/Nivo in December but only had one dose before my thyroid gland was inflammed and destroyed.  My team decided that I should go to just Nivo after that, but now after 5 nivo treatments I have colitis (lymphocytic colitis diagnosed by biopsies during a sigmoidoscopy).  They tried budesonide (steroid that is taken orally but only affects the gut- not absorded systemically) with me but it seemed to actually make symptoms worse (diarrhea, stomach upset).  I have been on treatment pause for 6 weeks.

I have had great response with my lung mets nearly completely gone already.  My doctor now thinks that I should just stop treatment and continue with surveillance - scans every 3 months with brain MRI annually.  

I would love to be done but I am nervous about stopping.  What are some experiences others have had - do your docs stop treatment when it seems the cancer is responding and the side effects are outweighing the benefit, or do they still treat and give more aggressive steroids?

Thanks for input!

Peggy

 

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Anonymous's picture
Replies 7
Last reply 5/24/2017 - 12:57am

Hi!

I found out on Thursday that 1 of my 3 moles biopsied came back as Melanoma In Situ. The other 2 came back as severly dysplastic and normal. I am still in shock and very scared, as I am married and have 4 young children. I am going in on Tuesday for a wide excision of the 2 that need it (and hopefully talking them into excising another large mole I am concerned about). 

I am wondering if there are any other mothers who are going through a melanoma journey? I feel like I am a ticking timebomb and am having a hard time not crying in front of the kids. I do not know anyone personally who is going through this, and it would be so comforting to hear from others in similar situations. 

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