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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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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Anonymous's picture
Anonymous
Replies 1
Last reply 11/21/2016 - 2:08pm
Replies by: Janner

I was approaching 1 year ned. Then i seen a small dot by original excision wle. Around 4 to 5 cm from original melanoma mole. Had it removed. Pathology came back melanoma in situ. Going for surgery next. Derm says she thinks its a new primary. My question is would i still be considered ned after the in situ removal. Cheers anon currently 3b stage

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CowWhat's picture
Replies 6
Last reply 11/25/2016 - 10:21pm
Replies by: CowWhat, Janner, debwray

Hi all. Thank you in advance for your forum contributions and caring advice. I've browsed this forum for a long time as i am extremely high risk for Mel.

First a back story:

I waa diagnosed 2 years ago with a very rare cancer syndrome called Cowden's
https://ghr.nlm.nih.gov/condition/cowden-syndrome

Along with the 2 other cancers ive had(thyroid + kidney) ive also had a phylloides breast tumor (even rarer).

I am covered head to toe in moles and have had over 30 removed. A few were dysplastic nevi, but none of the docs were concerned. This past Feb i had a full skin check at the cancer agency with 3 removed. All benign.

Anywho. Fast forward to last week when my new GP was looking me over and in a worried tone said i needed 4 removed asap. I came back 3 days later for 1 on my back and 1 on neck to be chopped.

The other 2 are on my legs and are not as urgent.

Ok, after stitching me he said to prepare myself for a WLE as the back mole was very dark, irregular and had signs of regression. I couldnt even see this mole as it was centered under my bra. It was not there in Feb.

To add....i have a 5cm breast lump jyst above where the Phylloides was removed. It cannot be seen on imaging not even MRI. Every doc has felt it tho. Only this GP is seemingly panicked and has ordered a biopsy soon.

Here in lies the rub: im not sure i want the WLE. My lifetime risk of MM is about 60%-basically inevitable. Breast CA is 85÷. Im spinning my wheels.

Ive had 8 surgeries since 2012. Not too interested in more.

So...help me decide if i should do the WLE if needed. It is unlikely to be scheduled before the new year anyway and we are still waiting on the bio pathology.

Thank you.

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GreenWally's picture
Replies 6
Last reply 11/21/2016 - 9:10pm

Ive been monitoring this forum for a few months. I guess it's my time to share. I was diagnosed Stage 3B. My primary was .9 with a mitotic rate of 1 on my upper back. The surgeon told me the chance of my biopsy testing postive were low, but not zero. Unfortunately, I fell on the other side of the percentages with one positive node with a few micromets. After a difficult decision, I opted for the complete auxiliary lymph node dissection. I was aware of decog and other studies suggesting a watch and wait rather than the CLD. As others, this whole experience was a mental challenge. I didn't think I could handle the stress of intense observation of the lymph node basin. I would always wonder, if I ever had a reoccurrence,if it was my failure to do the CLD that put me at a greater risk. The studies suggesting against the CLD were just not conclusive in the long term. I had to make the decision on what I knew at the time.

I don't have regrets. Its been 7 weeks. I have some nerve pain, but no lymphedema. I have full mobility and still go to the gym.

I opted against interfuron. The studies.I have read show it does very little for a year of flu like symptoms. The risk reward didn't seem worth it.

I have an appointment with my surgeon to decide a future scan schedule. I'm hoping for the best. I'm a patient st Mass General Melanoma Clinic.

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Anonymous's picture
Anonymous
Replies 0
rayofsun0777's picture
Replies 1
Last reply 11/20/2016 - 1:21pm
Replies by: Anonymous

I'm fair skinned, freckled and a strawberry blond. I am 38 and grew up in a time that a peeling sunburn was a badge of courage. Different times. When I was 16, I was burned very badly on my leg by an exhaust pipe. 3 yrs later an fleshy nodule appeared. It was removed and biopsied for fear it was BCC. It was negative. the lump returned and years later was removed again. Still know issues. Last night I was shaving my legs and saw a very dark freckle on the scar area. I examined it further after getting out of the shower. It was small (2 mm) but struck a cored with me, as I'm very used to my freckle colors and it was distinctly different. Then later that evening, my boyfriend noticed it too and was drawn to it. Clearly it's new and an ugly duckling relative to everything else. I'm trying to stay calm until I can get into see a dr, but I can't help but be anxious. Have any people here had melanoma on thermal burn scars? 

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JoshF's picture
Replies 13
Last reply 11/23/2016 - 12:14pm

HI MPIP Family-

I just wanted to put out a message venting. So I'm heading to Houston tomorrow as I'm scheduled to get 4th ipi dose on Tuesday. While I'd never give up the fight, my optimism and half glass full attitude on this Adoptive Cell Therapy is quickly fading and turning to half glass empty. While I believe my body attempted to mount an immune response, my sub q's are still there and now I've noticed a small sore lump in side of neck.I feel pretty good but I'm so disappointed. I don't know what to think...I'm not sure doing ipi Tuesday and waiting to do scans on Dec 15-16 is a good plan. I'm sure MDA will think it is but I'm very wishy washy. This would be my 11th dose of ipi in last 3 years....starting to think that ipi as single agent isn't my long term fix. I fought so hard to get those Tcells infused into me, brain mets, infection, liver out of whack and for the first time in 5 years I was physically impacted/ill from this disease. But I made it and was so hopeful. This is what I love and hate about this forum...the disappointment I have to read from so many, yet I love that I can just open up because so many of you understand and have been there. Sorry I'm biased because I only want to hear good things out of this forum as we all do, I'm so saddened by the struggles but so grateful we're hear to pick each other up and push us forward. Blessings to you all, I'm going to hug my wife & kids a few more times today...it helps when I'm completely broken.

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/21/2016 - 2:45pm
Replies by: SOLE

My son (T3b N1a M0 ,primary 3.9mm ulcerated) had an appointment with the surgical oncologist, who along with the medical oncologist had recommended clnd and treatment (ipi or trial of Keytruda/ipi). His ct scan was negative -yay- except for "a small spot in his chest which is probably just reactive." Now the surg onc is saying he is on the fence about the clnd because there was only a little bit of cancer in the node, but the med once wants it done. My son had decided to have the surgery and go for the trial in the hopes of receiving Keytruda ,but now there is uncertainty. And while I know the decision is not mine to make, I am not in favor of the clnd.Is the advice of the med onc in the best interest of the patient or the trial? What do you do when the two Drs treating you no longer seem to be on the same page? Any thoughts would be helpful,thanks!

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