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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lmccann2016's picture
Replies 4
Last reply 12/3/2016 - 9:44pm

Hi everyone some of you know me. So i will quickly let others know my situation. Stage 3 melanoma

Initial tumor was 4.7 mm depth 2cm vertical. Mitoic rate 7 margin clear by 0.3

Had wle and found 2.9mm more same tumor not reoccurance.

Had neck discetion as primary back of neck and had 4 out of 40 nodes cancer but still intact.

Treatment recommended

Everyday 5 weeks radition
1 year interferon

Or radition and clinical trial pembro/interferon

However i have 98 days from surgery to get clinical trial and do radition however i have an ooen wiund on neck due to infection and need it to heal by dec 16.

So if not healed should i skip radition go straight to clinical trial and if i dont get pembro stop trial do radition and then do 1 year interferon.

My neck is still healing and hoping infection oa gone however i still have hard areas on neck which i am concerned about. I see oncoligist surgeon on tuesday ..

Any advice on this would be good.

I would rather not do radition as i know sode effects esoecially on neck can be bad.

Thanks

Lisa

Lisa McCann

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the scared wife's picture
Replies 4
Last reply 11/29/2016 - 6:20am

I've been lurking on here since 2013 when my husband was first diagnosed. The possibility that he has a recurrence has finally prompted me to post and my username says it all. 

He originally had melanoma on his scalp. He had 1 positive lymph node. He had surgeries and was in a drug trial. He has been NED since late 2013.

He now has an area on his forehead. He had had it for probably 7 or 8 months and it was only skin coloured. The oncologist and the dermatologist both saw it when it was first noticed and thought it was an sk. Within the last month or so it has turned brown and looks like it is starting to ulcerate (not sure if right word - it does have a little bump in it similar to the many that were in his original area). We saw his oncologist last week and when we were saying it had turned colour she said that sk's can do that but when she looked at it she said that it was not an sk and he needed to get it biopsied. He is now booked to see the dermatologist on Tuesday.

I know I should know this, but what do they do to biopsy it? I ask because I'm not sure that things were done the right way at this point the first time so I need to know what is the proper way to determine if this is a recurrence. I want to be prepared for this appointment.

I'm sorry if this doesn't make sense. I'm just very worried.....

Thanks

 

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jennis3b's picture
Replies 1
Last reply 11/26/2016 - 9:52am
Replies by: Linny

Just wanted to ask your opinions... I had my CT Scan last week. They scanned from neck to pelvis. In the report it only mentions nodes in my chest area summary. There's no mention of them in my neck, abdomen, or pelvis summaries. Is this something to bring up with the doctor on Monday?

I included the chest summary below. 

Thanks in advance!

"No pleural or pericardial effusions. No evidence of lymphadenopathy in the thorax by size criteria is seen. There are stranding and infiltrative densities within the right axilla consistent with postsurgical changes. A few sub-cm nodes in the more inferior right axilla are also present.

Other sub-cm nodes of the thorax are also not significant by size criteria. There is soft tissue density conforming to the anterior mediastinal space, consistent with a residual thymus.

No suspicious osseous lesions of the thorax."

 

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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_Paul_'s picture
Replies 17
Last reply 11/29/2016 - 6:07pm
Replies by: _Paul_, adriana cooper, Tim--MRF, JoshF, Anonymous, Mat, jbronicki, Bubbles

Well I'm off to MD Anderson tomorrow. I think the seed of the idea to do this was planted by Ed who said I should talk to Josh. I tried to get hold of Josh using the MRF messaging system (which I have never had any luck with in the past), and failing that, lurked his posts to see he is going to Anderson for ACT.

Sometime around then it dawned on me that Anderson has the biggest melanoma program, period, so why wasn't I at least getting an opinion from them?

So, we will see.

I had a sobering conversation with the lead researcher for the TIL in Seattle who pointed out the possibility that I am no longer responding to immunotherapy (having failed both ipi and pembro as mono treatments). In which case TIL will be useless.

But I don't have a better plan, so unless Anderson has something compelling, the plan is to start the old-school TIL regimen around Dec. 13. I was supposed to start a week earlier, but they have been having problems "growing good TIL" from their current batch of donor blood which they hope to have cleared up by then.

I can feel my energy level subsiding and my breathing is a little more labored than it used to be (my biggest tumor is encircling a major airtube in my lower right lobe).

I have come to grow accustomed to Zaphod, the sub-q on my right shoulder. I think of it as a barometer. If I feel that sucker shrinking while on some hopefully-soon treatment, I will be quite pleased.

- Paul

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landlover's picture
Replies 5
Last reply 11/28/2016 - 10:17am

Well I had my wedge lung biopsy 2 days ago and the preliminary results are that it is melanoma.  It was my first question to my husband and daughter in the recovery room.  Although I knew it was very liekly it was still hard to hear, and I know it was hard for them to hear too.

I will be talking to my oncologist soon, and just want to know if anyone has any suggestions aobut what questions I should be sure to ask.  I am BRAF negaive, was stage 3C prior to this and have not had any treatment other than CLND left neck.

Thanks for being here as a place for people struggling and seeking answers to meet.

Peggy

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Anonymous's picture
Anonymous
Replies 0

Well I had my wedge lung biopsy 2 days ago and the preliminary results are that it is melanoma.  It was my first question to my husband and daughter in the recovery room. Although I knew it was very likely it was still hard to hear, and I know it was hard for them to hear too. 

I will be talking to my oncologist soon, and just want to know if anyone has any suggestions about what questions I should be sure to ask.  I am BRAF negative, was stage 3C prior to this and have not had any treatment other than CLND left neck. 

Thanks for being here as a place for people struggling and seeking answers to meet.  

Peggy

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Calynda's picture
Replies 11
Last reply 11/30/2016 - 5:15pm
Replies by: Calynda, cancersnewnormal, Anonymous, jennunicorn

I was diagnosed with stage 3b while I was pregnant almost 4 years ago.

today I went to the ER and had a MRI done.  Tomorrow I head to see a radiation oncologist.  They found 3 lesions in my head "consistent with melanoma." 

My kid is 3.5, I just finalized my divorce.  At least, since I moved in with my parents, I have help.

I'm currently in central Illinois and have to research where I should be going here.  I was originally diagnosed out in Southern California while with Kaiser.  

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Anonymous's picture
Anonymous
Replies 0

Today I went to the orthopedist due to reoccurring bone pain in my right arm. He wanted to do an X-ray to rule out anything more serious.

The X-ray came back with a couple pea sized white spots on my bone. He wasn't to worried about this but then again he doesn't know that I recently had a malignant mole removed from that same area. 

Could it be mets? I'm just wondering because I don't really know what they would look like. I'm going to ask my gp but I wanted your thoughts on this. Has anyone had anything similar happen? I think that it's probably something normal but I just want to make sure. 

Thanks :) I'm going to my GP on Monday so I guess I'll find out then.

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Jubes's picture
Replies 6
Last reply 11/27/2016 - 3:32pm
Replies by: Jubes, cancersnewnormal, Bubbles, Anonymous

Hi all

had my right lower lung lobe removed two weeks ago. I am amazed at quick recovery. However I have a persistent cough especially if I try to take a deep breath. I had some air leaks after the op and the dr said do not take any cough suppressants. 

My family wants me to call the surgeon even though I will see him for x ray and post op in a week. I already saw him a week ago to take the sutures out. Family think the cough sounds like the one I had when the cancer was really bad. I am also extremely lethargic, but it has been very hot here and I know my cortisol levels are very low and will be tested in a few weeks  

Personally, I think we have removed the cancer and I don't like to pester doctors unnecessarily. I have emailed the surgeon to keep the family happy. Just wondering if any of you had bad coughing after lung surgery and how long did it last. 

Thanks

anne-Louise 

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Sophietx's picture
Replies 9
Last reply 11/26/2016 - 1:11pm
Replies by: Sophietx, Anonymous, jennunicorn, Janner

Hello,

I was just diagnosed with melanoma in situ in the US. I looked at my old photos and notice that my mole started after my 2nd pregnancy about 12 years ago at age 28. It was a perfect looking, round but very dark flat mole. It was removed and also had WLE at large hospital center. Do all melanomas in situ progress to invasive melanoma? My father had many dark moles and I just assumed it's after him. Should I have 2nd pathology done?

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Sophietx's picture
Replies 5
Last reply 11/28/2016 - 6:29pm
Replies by: Sophietx, Anonymous, Janner

Maybe you can give me some advice. I am from Europe but have lived in Australia, California and Florida. Both of my kids are fair skin. Especially my 13 year old son has had white hair and blue eyes. We spent big part of his life in Florida. I was just diagnosed with Melanoma in situ. My son has huge moles - more than 1 cm like 5 of them on his head. I have taken him before to pediatric dermatologist before and the doc never said anything. Also he has a large mole in his belly bottom. I am taking him back next week. What should I do? Should we have all the big moles removed? Now with my history I am really worried. 

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HU's picture
Replies 3
Last reply 11/24/2016 - 8:08am
Replies by: Anonymous, HU, Janner

Hi,

I have  been diagnosed with melanoma on my upper back. Tumor is shalow (0.27mm), absent ulceration and no mitosis. Although I know that in terms of melanoma this is all pretty good news, I am really scared. My  pathology report says the tumor shows extensive regression, involving the papillary dermis. This has concerned my doctors enough that they are considering doing a lymph node biopsy. I can't find a lot of information regression and what this means of my prognosis. What I do find is mostly conflicting.Can anyone help?

Thank you so much 

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Momofjake's picture
Replies 5
Last reply 12/1/2016 - 5:24pm

Hi All,

Its been a nice break:) Jake went to Iceland and loved the peaceful trip. Life has been okay, but at 19 you are tired of waking up to only think cancer. It's been 2 years now. Crazy!!

I knew Jake wasn't adding the MEK and only taking the TAF sometimes. Well, he has been icing his neck. He finally asked Sunday night for a scan. I pushed. Had an MRI Tuesday. New spine tumors. Who knows how big, how many, and what else is growing. The PA in accute care didn't want to scan and offered him muscle relaxers. He insisted. He stayed 7 hrs to get it. Then her call was ridiculous. No good info and she said to take Tylenol and all was fine. K. What the what?? We know that after MEK/TAF things can move quickly. Jake has said no to ipi and they offer nothing else. They will send the MRI results to his regular doc and I will call them tomorrow.

He did open up yesterday--a first in a long time. We were just tired and watched some Office with his brother. He fell asleep early. He is starting to have some pain. This is one incredible, smart, handsome kid who just got robbed. He said he knows there is a God, he just isn't sure why he has left him out to dry for awhile. He said he has gotten the opposite of everything he has prayed for but he still prays many times a day. I don't feel like praying much today. I just feel sad and I feel like I can do whatever Jake wants. Josh, don't give up. Please. 

Jake isn't fond of the whole system and wants to fly to Germany next week to seek an alternative treatment. He injects some now and I don't fight him. It's his body. He gets to choose. I will prob drop some $$ and take him where he wants. I will update when there is something to report. For now...Melanoma is a tricky road! 

Kerri--momofjake

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Anonymous's picture
Replies 2
Last reply 11/23/2016 - 5:24pm
Replies by: Anonymous

wondering if anyone has any experience with getting compassionate use for stage IIIb?  how do we go about getting this?  hoping to get Keytruda.

thank you for any guidance

 

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