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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Anonymous's picture
Anonymous
Replies 2
Last reply 1/20/2016 - 9:25am
Replies by: Lil0909, Andrew1725

Hello all, 

I have almost reached my 6 months of Interferon treatment and this doesn't seem to be getting any easier. (Not sure it's supposed to.) I have ear pain, fatigue, loss of balance and migraines almost daily; I'm on Imitrex and Topamax. I drink tons of water. Also, going to try ginger root and peppermint oil. Also, noticing extreme muscle tightness in my neck, shoulders and base of my head. I hate to be negative but I have been pretty miserable lately. Wondering if anyone has any suggestions on how to ease any of these side effects.

Jen Stanley

Stage IIIa 

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karima49's picture
Replies 2
Last reply 1/20/2016 - 8:43am
Replies by: Rita and Charles, Mat

Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or...? My mother is my very best friend and I'm so scared of losing her. Thank you. 

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Scared99's picture
Replies 4
Last reply 1/20/2016 - 6:15am

I wanted to thank those of you who responded to my biopsy question.   I was hoping for a few more pieces of information from those of you with melanoma knowledge. 

 

Since my dermatologist visit in July I have been obsessing over my moles and regretting many past decisions of mine.    Most of my moles are very dark and in the skin,  When I google them it appears they are junctional nevus.  I had one biopsied in July and it came back very mild atypia.  I am nervously waiting my two other biopsy results from this week.   These moles  started appearing in my 20's and I continue to get them popping up in my 30's.    How much higher risk does this place me for melanoma ?  I have about 7 of them about the size of an eraser or slightly smaller and around 100 very tiny ones that you cant see unless you are on top of me.   I had one derm tell me i was very high risk and want 6 month visits.   Another tell me not to worry about them and wanted to see me every 3 years and the last one told me I have a slightly higher risk and wanted to see me every year.  

 

I am also getting conflicting info on the link between melanoma and the sun.   I had a ton of sun exposure my entire life.  I usually get a slight burn in the spring and usually get very dark by the end of the summer.   I also used tanning beds in my 20's.     I feel like this has also raised my risk significantly.    No one in my family has every had melanoma.  

Does hair color, skin type and eye color elevate the risk as well ?   I have very dark brown hair,  dark green eyes and am unsure of my skin type.   I do not think I am fitzpatrick skin type 1  or 2 as I do get very dark...  I might be a fitzpatrick skin type 3 ?   

Thank you all.... I am looking for any info you all can provide.

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SunnyTheNurse's picture
Replies 6
Last reply 1/20/2016 - 12:47am

Hi there, I'd love to hear from anyone else diagnosed with this very rare cancer. 

I'm 39, live in Australia and have had two large growths removed by way of radical hysterectomy. Furthermore, biopsies from that found cells in my vagina and removed pelvic lymph nodes. I've had radiotherapy and am now about to begin a new immunotherapy treatment. It's uncharted waters in terms of how to beat this. Please share your approach. Erin

Erin 

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amandak1026's picture
Replies 5
Last reply 1/19/2016 - 6:45pm
Replies by: amandak1026, Janner, Anonymous

Hello,

My mom was diagnosed a few weeks ago. Her first biopsy showed a melanoma on her leg with a Breslow's depth of .66mm and a mitotic rate of 1. They took the tumor out last week, and the path report came back with the Breslow's at 1.03 and a mitotic rate of 2, and assuming no spread, staged her at IB. She did NOT do the SNB.

Now they're recommending she go in for a lymph node dissection. I'm very confused, as I thought the dissection was a full removal of the nodes because cancer was found there. But they don't know that yet? Is it normal for a dissection to be done as a prognostic tool? My mom is terrified, and I'm trying to find out as much information as I can for her, so I'm sorry if this is a dumb question. 

We meet with the surgeon on Thursday to discuss.

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/19/2016 - 4:52pm
Replies by: jodaro

I am hoping someone can shed some light on moles, atypical moles and melanoma.   I always thought my moles were normal.   I have a bunch of very dark ones that are all flat.  Some of them are so dark brown they appear black at times.   I had my first mole check in the summer.   The dermatologist made a comment on my funny moles and removed a small one from my back.   This mole came back with mild atypical.   I was told to come back every 6 months.   I went to a new dermatologist that was closer to my house.   He did not bring up my moles at all except when he said the good thing about having a good deal of moles is that it makes it easy for me to see how your moles are supposed to look.    That visit was in Dec and he told me to have my wife check my moles every month and keep an eye for any changes.   He wanted to see me back in two years.

I had a seperate emergency and needed to see a dermatologist asap.  I had an allergic reaction to something.  I went to another dermatologist last week.   While examining my rash he commented on my moles.   He then asked if I wanted a body exam.   He removed a mole from my chest which I have had my entire life. He said that looked atypical.

Today I was examining my moles and realized almost none of them are perfectly round.  They all have variying shades of brown so they are not all the same color.   I then noticed one on my love handle that looks like the rest of my moles dark brown but it has 4 distinct dark brown spots ( almost looks like 4 pin head spots visible in the mole When I Spread the skin apart these 4 dark spots are visible. .    My question is how concerned should I bewitht this ?  Considering two derms have examined me in a month ?  Should I go back and show this odd looking mole to the dermatologist again?  Also because most of my moles look the same are not perfectly round do I have dyaplastic nevus syndrome or are these normal tiny moles and thats just the way they appear on my body ? 

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/19/2016 - 4:34pm
Replies by: Maereard, Rlukas79, Anonymous, Janner

I went for my regular skin check last week and while I was there I asked the doctor to check a spot on the back of head that was itching like crazy. I expected him to send me home with medicated shampoo. What I got was a small chunk taken out of my head with the smell of burning flesh to stop the bleeding and a terrible anxiety ridden wait on a pathology report that still is not back. I have been NED for 3 years. I was stage 1 at diagnosis (it was on my shouldler blade/ back)and have only been hit with basil cell about 5 times. Anyhow I did not prepare my mind for anything on my head!!!! Now I'm panicking and loosing sleep. My head keeps itching but the dr. refuses to prescribe anything until he sees the report. He usually reads them himself but this time they sent it out to MAPS "to be sure." Sure of negative or positive they won't tell me. I'm so scared. If it comes back on my head I'm terrified and the Internet odds are NOT helping my paranoia:(

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GAngel's picture
Replies 26
Last reply 1/19/2016 - 10:10am

Hello all, I am fairly new to the site.  I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month.  His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so debilitating that they reduced his dosage to 3 pills x a day and an every other week schedule. His last visit to the oncologist a few days ago revealed that he was still responding positively. Despite the great results we opted for the new treatment because  his oncologist advised that the side effects are less severe, and the results better, so this is our hope.  I was wondering if any of you are on the combo and if so how are you doing?

Thanks for reading and I will keep you posted on my husbands progress! I am praying for all of you who are fighting this dreaded beast, you are true warriors, may the Lord be your strength through it all! God Bless you and yours.

Sincerely,

Gina (wife to Rudy)

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/17/2016 - 10:16pm
Replies by: Anonymous, jamieth29

I have a recurrence in my groin area which they wont operate on as I am on keytruda with mets in a few different places in the body. I dont really want to do radiation but I dont think there are any other options.

Does anyone have experience with radiation to the groin ie number of treatments, side effects, strategies to help with coping.

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Anonymous's picture
Anonymous
Replies 11
Last reply 1/17/2016 - 6:06pm
Replies by: scots, AshleyS, kylez, G-Samsa, Anonymous

Has anyone recently been through this treatment? I have read several articles/stories about this treatment but they all seem to be 3 to 4 years old so I do not know where they are now. I'm looking at the trial at NIH. I'm looking for some other treatments because ippi/ nivo did not work for me and I'm braf negative. I'm also looking at another trial at Duke and I'm working on a consult at MSKCC for a different opinion. I'm leaning towards the trail and if that treatment dose not work then I will try the the TIL treatment.

thanks 

scot

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/17/2016 - 2:57pm
Replies by: Anonymous, Ed Williams, geriakt, Scooby123

Ive been sick since dec 31st with a really bad cold that I caught from my daughter.  I actually tested positive for the adeno virus. Had a fever for  8 days straight and was in the hospital for 4 days. Last friday was my last fever until last night. Started feeling week and took my temperature and it was 103. I took a fast tylenol and within a hour was back down to 98. My question is on each side of my neck I have a swollen lymph node maybe the size of a marble that are a little tender. I had a ct scan of my neck in hospital and all they seen was inflammation and congestion. Is this anything to worry about or is this just from my body fighting off infection. I have Yervoy scheduled for monday. Will I be allowed to do Yervoy or will the yervoy push me over the edge and make me super sick. Can somebody do yervoy with a cold? Thanks

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stevecathy's picture
Replies 4
Last reply 1/16/2016 - 12:47pm

My husband had reaccurence Mets in transit found at 3 month dermatologist check. He had just finished 4 infusion of yervoy. Went back to ctca in Chicago Wednesday this week , oncologist did ct scan now has small nodule in right lung too small to biopsy. Now he is to start mekinist and tafinlar hopefully next week. Wanting to know thoughts and anyone experience with this combo treatment. Thank you and blessings

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 15
Last reply 1/16/2016 - 12:33pm

Hi Everyone,

In October 2013 I was diagnosed with melanoma stage 4 with many metastases in my liver and both ovaries. I started to participate in clinical trials ( Nivo/Yervoy). Everything went really well, without any side effects and my CT scans were showing that liver metastases are not spreading and one on the ovary is getting smaller. Although there was a small tumor in my spine, the doctors told me there was nothing to worry - the treatment is doing its job. 

In April 2015 i was rushed to ER with severe pain in my right side of the hip and the whole leg. CT didnt show anything. I was on strong painkillers for two months and begged to do MRI. MRI showed I had new tumor on my hip bone. I was withdrawn from the trial and told I was getting Ipi. In July I had a radiation on my hip and spine tumors. At the same time headaches started and there was constant noise in my left ear. MRI of the brain showed one tiny metastasis which was  treated by cyber knife and I also got treatment for vertigo. Then my doc decided to put me on Keytruda.

At the end of July my headahces got worse, I started to have double vision, nausea, lost control of my left arm and almost couldnt walk. The urgent MRI of the brain was performed and my oncologist told me I had leptomeningeal metastases . I stopped Keytruda and switched to Tafinlar/ Mekinist combination which stabilized my situation.

My oncologist refused to do lumbur puncture saying there is no point in it.  I was told this is terminal complication and there is no cure. When Tafinalr/ Mekinist combination stops working, there is nothing they can do. 

I live in Israel and the medicine here is considered to be one of the best in the world. But I feel that my doctors gave up on me. I read that many patients with leptomeningeal complication in US are getting brain radiation and spinal chemo and other treatments. I am 31 year old woman, my body is still fighting. I dont understand why my oncologist doesnt want to do anything. I feel very desperate and depressed since the diagnosis.  Because of the high fevers and other side effects I had to quit my job and now the only thing I am doing is looking for any treatment in the internet. But there is almost no information on leptomeningeal metastases in melanoma.

Please let me know are there any options? Can I ask my doc to go back to Keytruda? Is there anyone with the same diagnosis? please help me, I am very desperate

 

Maria 

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Christine.P's picture
Replies 7
Last reply 1/16/2016 - 11:33am
Replies by: jamieth29, _Paul_, Julie in SoCal, dfeng, BrianP, Anonymous, geriakt

A brief history: I am stage 4A with current tumors in my left breast and near my sternum. I started Opdivo alone (insurange dragged its feet on the Yervoy combo and my doc didn't want to wait. That's a whole other story.) in November and will have my 5th dose tomorrow.

Scans last weeks showed "significant decrease in size in breast tumor." My surgeon wants to take it out anyway. (The ultrasound tech told me it was "half the size" - even though she's not supposed to tell patients anythins. Not sure about the other tumor; will find out the CAT scan results at my appt. tomorrow). I just recovered from several procedures - removal of two primary tumors, one on my leg so deep I needed a wound vac and skin graft, full axial lymph node removal, biopsies of the breast and sternum tumors, and a port implant. I just don't want more surgery right now if I don't have to. 

I know everyone's experience is different and what works for one may not work or be best for another, but I am just curious about others' opinions on surgery if tumors are clearly shrinking with chemo. 

Thank you!

Christine P. 

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