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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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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Anonymous's picture
Replies 6
Last reply 12/2/2016 - 2:19pm

hello everyone,  we are in northern california.  my husband is stage IIIb. we have had SLNB and CLND done already (chose the most experienced surgeon around our area) and are now getting ready for adjuvant therapy and are deciding where to go.  any experience / input would be greatly appreciated.  our choices are:

Stanford Hospital - Dr Sunil Reddy (closest to us)

UCSF - Dr. Adil Daud 

CPMC in SF - Dr. Kevin Kim

thank you kindly

 

 

 

 

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Anonymous's picture
Replies 2
Last reply 11/23/2016 - 11:50am
Replies by: Tim--MRF, jennunicorn

I've had a green spot ever since I was little. It was flat and evenly colored so I didn't worry to much about it. 

A couple years after that I went to the doctor and she told me not to worry unless it grew to 6 mm (it was 4mm at the time) or if it changed color. (I was 11 at the time)

Now I'm 15 and its 8 mm and gone from flat to hard. It used to be a solid green, now half of it is darker than the other and there's a dark reddish purple dot on it. This may be unrelated but I have a lot of bone pain in the same arm... Especially at night. It's weird.

Im worried that it's melanoma or something malignant. I'm supposed to go to the doctor on Thursday but I'm just so scared. My aunt died from melanoma and I dont want to go through that or put my family through that again. 

I would appreciate your input. Thank you so much for taking your time to read this.

 

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SMacBosch's picture
Replies 9
Last reply 11/28/2016 - 9:16am

Good day, everyone.

My husband is 39 years old and has systemic lupus erythematosus (SLE) and antiphospholipid antibody sydrome (APS - basically, an autoimmune blood clot disorder). 

He was diagnosed with stage III melanoma 2.5 years ago in the jawline area, just in front of his left ear. After his GP did not get it biopsied the first time it was removed (even though ulcerated!), it came back with a vengeance and a dermatologist caught it about 5 months later. A neck resection removed a 5cm round and 42 lymph nodes in his neck. The surgeon did a great job and the edges were clean; however, the cancer was discovered in the sentinel node (but only in 1 out of 42 nodes!). Because my husband has SLE and APS and the cancer team was sure they got everything with the surgery, it was decided that no chemo would be performed at that time. The risk was too high for the 3% chance of benefit. He recovered from the surgery and we got on with our lives.

In August of this year, he developed a headache that wouldn't go away. A CT discovered a walnut-sized met in his right frontal lobe. It was removed and a body scan was scheduled to check for other mets. His recovery from the brain surgery progressed well but at about 3 weeks post-op he started to decline, feeling weak, had vomiting, night sweats and a loss of appetite. It was around this time that a CT scan found a 10x11x13 tumour in his liver - inoperable. There are a couple other ones in the liver but this was the biggie.

There was also something in his jejunum (bowel). Blood tests also showed that he was slowly losing blood and his INR was at 12 (a normal person should be 1, his therapeutic level to avoid clots is between 2 and 3). A couple transfusions were done over the next week as they tried to determine the cause of the bleed. A bowel resection was done to remove an egg-sized mass in his bowel. His blood levels returned somewhat to normal off at that point.

Due to the inoperable tumour in his liver, his prognosis was 6 months to a year.

In spite of the inherent dangers of chemo to someone with SLE and APS, we decided to go ahead using decarbazine (rather than the more dangerous immunotherapy). He felt great for a week and a half, then his body started going haywire again. High INR, low hemoglobin. More transfusions and hospital stays.

Yesterday we found out that the decarbazine is not working, the tumour has grown a couple centimetres and he is still quite sick in spite of the fact that the chemo should have been out of his system over a week ago. He is currently in the hospital. The medical oncologist is now giving us only a couple months but has suggested Yervoy immunotherapy as a last resort to buy us more time. It is now up to us as to whether or not to go ahead on Friday with Yervoy. As someone with SLE/APS, the treatment could, literally, kill him, but if we want more time this would be our only option. My husband is leaning towards taking Yervoy.

Anyone have experience with melanoma, autoimmune disease and side effects/results?

Thanks, 

Sandra

p.s. I'm from Canada

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https://www.melanoma.org/understand-melanoma/resource-library/educational-recordings

Interesting new numbers on Stage 3 5year and 10 years OS, but no description by a-b or c.

Surprising numbers on interferon's sucess rate

Your impressions?

 

 

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JayArr's picture
Replies 6
Last reply 11/28/2016 - 11:51am
Replies by: JayArr, Mat, CowWhat, jennunicorn

Hi,

Let me give you a rundown of my situation, I'm looking for helpful advice so let me thank you in advance for your time and responses.

I'm located in Victoria, BC, Canada. Closest major cities are Vancouver BC and Seattle WA. Unfortunately we don't have any melanoma specialists in my province and I wouldn't be able to use any in Seattle unless I could afford it out-of-pocket, so the closest one that I could find on Google is about 1250kms away. Apparently we have a "critical" shortage of derms here in BC because their pay is the lowest here. There's actually more than one that commute across the country to work because they make more doing that than just staying home.

Anyways... Aug 2015 I had a mole removed from just below my right pectoral that was diagnosed 1B - <1mm thickness but with ulceration, Mitotic rate 1. As a follow up a couple weeks later I had a WLE along with SLNB, nothing else found. I guess that means I'm NED? Since then I've been seeing the dermatologist every 3 months, I've had a couple spots that were suspicious to me but he's not been concerned about anything he's seen so far. He did do a thorough exam on my first visit, I think to provide a baseline for any changes.

Now, however, it seems that every time I'm back, the visits are getting quicker and quicker (my last exam was probably 3-4 mins); almost like he's relying on me to tell him if there's anything that needs looking at. That said, I do have a small, firm, domed lump on my back, approximately 1cm across. I don't recall when it first showed up; my wife thinks it showed up around the same time as my initial diagnosis and surgery; possibly even before that but neither of us is completely sure. I've asked him about it a couple of times and he seems quite reluctant to do anything about it. My intial surgery site scar is hypertrophic and while that's not really cause for concern to me, he seems to think that we shouldn't do any more excisions unless absolutely necessary. He feels the lump on my back is a "benign cyst" and doesn't warrant any further tests. I didn't find much when I research melanoma + benign cyst, but I haven't been able to stop thinking about it and after a while I felt that it does warrant more tests. So I went to my GP and asked for a referral to another derm.

I wasn't actually concerned until I went to my GP (who also didn't seem too worried about it) and she called it a sebaceous cyst. When I started researching melanoma + sebaceous cyst, then I started to get concerned. Now I'm awaiting her call with her next steps, as she said she was going to consult my derm (who apparently is THE skin cancer dermatologist in our area) and get back to me with a course of action. I just want it removed and/or biopsied! Shouldn't they be jumping if I ask for something to be tested? What am I doing wrong when I go to see them? I'm not downplaying it (I don't think) when I'm there so are they right to not be concerned? I'm starting to think I may need to pitch a fit in order to get anywhere!

Anyone else been in this boat before? Or anyone else with Melanoma in BC? If so what's your story?

Thanks everybody... sorry I couldn't make this shorter.

JR

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Anonymous's picture
Replies 6
Last reply 11/23/2016 - 12:08pm
Replies by: jennunicorn, geriakt, Anonymous, Carole K

hello folks, my husband is a stage IIIb and had SNB and CLND and will be starting IPI soon. thank you for all your help & guidance thus far on this forum.  (better information on this forum than we have gotten from three  melanoma centers combined thus far !) .

we would like to complement the medical route with any viable natural regimens. there is an overwhelming amount of info online but i would really appreciate the help of you guys who have been down this path, to point us in the right direction so we don't lose time getting lost in all the hype.

where do we beging to educate ourselves and choose the right path?

thank you kindly

 

 

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