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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vickiaa0529's picture
Replies 32
Last reply 4/27/2016 - 12:46pm

Hi

I have to apologize in advance for a probably duplicate post. I know someone had a similar question and now I can't find it.

I am recovering from a groin lymp node dissection. It is not fun. Too make a long story short I had a WLE in Feb 2015. In Feb of 2016 my inginual node swelled and tested positve for melanoma. My pet/CT scan was clean and the dissection was clean expect for the inginaul node.

My prevention care option was Yervoy/IPI for nine weeks once a week for 9 week and then follow up. Or I can wait until June for Nivo. Also I guess I could wait and just do the scans. I am not a wait for it to coma back person.

Right now I am in Seattle and going to SSCA I am thinking of going back to Houston to MD Anderson for a second opion but I am also open to other places in the US for a second opinion. I lived in Houston for 25Years.

So far I am not hearing a lot of good things about Yervoy/ipi the side effects are scary.I am listening to the Webinar right now with Dr Luke that someone posted.

 

Thanks for any adivce

 

 

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GreggL's picture
Replies 7
Last reply 4/27/2016 - 8:17am
Replies by: Anonymous, Ed Williams, JuTMSY4, geriakt, GreggL, Bubbles

A couple months ago they found a tumor on my lower right lobe of my lung. Of course all my family and friends were saying it's probably nothing but I knew better. I've never had a tumor on my lung in my entire life, now being off Interferon for almost 5 months they find one. I had surgery to remove the tumor on 4/6/2016 and it wasn't pleasant to say the least. The were considering doing the needle guided biopsy then decided with my history just to be safe and cut it out. The surgeon came in the next day and said we don't have to wait for the pathology report he said it was melanoma which moved me to stage IV. I was actually ok hearing that because I already had two months to prepare since they first found the tumor. They said I did not qualify for a clinical trial right now because I had already been through Interferon, had so many surgeries and now there is no evidence of disease since they just cut it out. She said if it ever came back again I will qualify for one. My oncologist did want to start me on Keytruda though for at least one possibly two years. Her thought was that hopefully it could kill any microscopic melanoma that the scans won't pick up. The day I went in for my first Keytruda treatment (4/20) she said she would be giving my Opdivo instead. I was actually kind of happy to hear that after the little bit that I have read about both meds. I was wondering what your thoughts might be on that? Deciding to switch to Opdivo instead of the Keytruda that she originally planned on. I will say I'm a combat vet and I go to the VA so I was curious if price might have played a role? Would love to hear your thoughts. Thanks...

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HopefulOne's picture
Replies 4
Last reply 4/27/2016 - 5:18am

My husband has a world-class neurologist and awesome melanoma specialist at Jefferson in Philly. Our oncologist reviewed my hubby's recent MRI results with us and showed us a "white" area that seems to be at C4 and has a hook to C5. She said the neurologist had no idea what it is but didn't think it looked like cancer. I'm baffled that someone of his caliber can't guess at things it could be. They are doing a PET Thursday to see if it lights up. It just keeps bothering me ... Was wondering if anyone else has run across something like this. Thanks. Kimberly

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MoiraM's picture
Replies 6
Last reply 4/27/2016 - 12:57am

I realised today that is a year to the day since my first Ipi infusion.

Good points: My tutours shrank and could not be distinguished from normal tissue in my last CT scan.

Bad points: My anterior pituitary gland is permanently damaged, so my body does not produce many of the hormones it should and living with inactive adrenal glands tuns out to be a bit tricky. Also my gut is still weird from the Ipi.

Other points that others may identify with:

1. My doctor said right at the start that if the Ipi worked, that would be 'a good thing'. When I turned out to be a responder (which was a total shock - I'm not the kind of person who pins my hopes on a 15% chance), 'good' became 'if you make it to three years you should make it to ten'. Despite reading everything I could get my hands on, I could not work out my chances of making it to three years without more evidence of melanoma. My husband and I decided on 50%.It seems a good enough guess after we looked at all those graphs and tables.

2. Scans. They don't get any easier with practice. I have a CT scan sceduled for Monday. I can fine until about a week before the scan. Then I have the scan. Then I have an appointment with my melanoma consultant a week afterwards. So I am a bit shaky for these two weeks. I don't like admitting it though, because I am one of the lucky ones. Ipi worked for me. I feel I am being ungrateful.

3. Why am I still working? I have an important job that I believe in but it is stressful and very hard work. I have an ongoing 'modified working' certifiate but I always go in and even end up doing more when my colleagues don't do their bit.There are other oprions but I cannot bring myself to take them.

4. I have the best husband in the world.

Other points that I doubt anyone will identify with:

1. I knew I had melanoma for years before I sought treatment because I have a phobia or doctors and hospitals. I honestly expected to be too ill for treatment by the time I could not hide how sick I was. That was the plan. Only it didn't work out like that.

2. In return for (a) various doctors putting up with me behaving as if I have a phobia of spiders and they are are 6 foot tarantulas and (b) them coming up with a treatment plan that meant I have not been admitted to hospital, I had a lot of therapy. The first course of treatment was to teach me to control the panic attacks and the seond to try and mitigate the actual phobia. The second involved CAT (cognitive analysis theraphy) and EMDT (eye movement desensitization therapy - which they use to treat PTSD) It's easier. The phobia has not gone. I now know that my childhood was not in the 'normal' range.

3. I used to say 'I can do death but I can't do doctors'. I think it is still true. I am definitely not where I expected to be or going anywhere I expected to go. It's all very weird.

All comments welcome.

 

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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Kimberann0912's picture
Replies 3
Last reply 4/26/2016 - 9:11pm

I was diagnosed in May 2012 with melanoma at 23 years old and 6 months pregnant with my second daughter. I went to what they call a salud clinic which is a half priced clinic in my opinion. The doctor for one, had his nurse Call me to tell me I had melanoma but she knew nothing! I couldn't even talk to the doctor himself! And she called me on a Friday at almost 5 pm! I saw a surgeon that following Monday he never even told me a stage. Saw an oncologist and he didn't explain much of anything. I had a local wide excision as well as sentinel node biopsy done July 2012 and it came back clear. I have just been seeing a dermatologist regularly. Until one day I heard of someone that it reoccurred in after 5 years. Now I'm like what!!! Was I supposed to be getting yearly pet scans and blood work?! Nobody said anything. My original melanoma was a 1.1 mm with a mitosis rate of 1 per 2. I don't even know what stage that would have been!!! Help! 

Kimberly A. Smith 

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HopefulOne's picture
Replies 3
Last reply 4/26/2016 - 8:59pm
Replies by: HopefulOne, Momofjake

Hi all,

I've been MIA for a while. I know it's selfish but when things are going relatively smoothly for my husband - I want to feel like life is "normal" and so I tend to go dark and not come on this forum as much.

But lately I've been poking around, checking on you all.

A quick snapshot of his journey: primary melanoma about 20 years ago, its return October 2012 under his armpit (11 positive nodes out of 31 removed), spinal tumor in May 2013, small bowel resection in March 2014 and then another small bowel resection in May 2015. Since then, he's been on Keytruda. His #16 infusion is next week.

Generally all has been well except the last few months he's been feeling more and more tired. I probably should back up and let you know that he's worked hardcore pretty much through all of this with a fairly physical job. And after chemo, you can pretty much find him at the gym lifting more than most of us weigh. :-) 

But the fatigue is getting to him. He's also been complaining about pain in his ribcage/chest area. He likens it to having a cracked rib that seems to get worse when he lays down.

So what's the game plan? He's getting two MRIs (lumbar and thoracic) today. And then his former melanoma specialist (long story there but we're still in contact with her) suggested he get his endocrine functions checked out, said his issues could be inflammation around the lining between his chest wall and lungs, and/or bone mets (lytic lesions). Scenario three sounds the worst/most scary to me. Other than the MRIs today, we're going to wait until next week to talk about the other test options with his current melanoma specialist. 

You know the drill: anxiety out the wazoo. I'm trying hard to remain positive and hopeful. But just having one of those freaked out days.

If anyone has had or has had a loved one with similar symptoms, I'd be curious to hear about your journey.

Wishing you all the best - and thankful we have this way to seek out support and positive energy from each other.

Thank you.
Kimberly

 

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Janner's picture
Replies 13
Last reply 4/26/2016 - 7:09pm

I was originally diagnosed today 24 years ago as stage 1a.  That lesion would be considered stage 1b in today's staging criteria.  I also had 2 other primaries, an in situ in 2000 and another stage 1b lesion in 2001.  I'm still here.  Still stage 1b.

I post this only to show that there are stage 1 people (and 0 and 2) that don't progress.  This board is very lopsided towards those who have had a recurrence and it is easy to lose perspective.  Not all early stagers progress, in fact most don't. 

http://www.MelanomaResources.info

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/26/2016 - 1:23pm
Replies by: exfakebaker, Janner

Hi!  I am a pre-melanoma person at this point.  I am a redhead/pale skinned person who grew up in the era of everyone using tanning beds (I'm 31).  Used them every spring from March-May or so, then spent the summer with sunscreen on my face/shoulders and not really anywhere else (on weekends).  Usually had a tan until about August, then let it fade out.  This went on from about age 16-30, with a couple springs/summers that I sat out on because of pregnancy or one year when I didn't think tanning was good for me at age 25.  Also remember having sunburns as a child.  However, to my knowledge, there isn't melanoma in my family (other skin cancers though).

I used to see a dermatologist once a year (for 2-3 years) when I was 24-27.  Nothing ever found, but did get the tanning lecture.  I moved to another state and didn't have a dermatologist anymore for 3 years, during which time I also wasn't tanning much (pregnancy).  

Last spring, it occurred to me that I hadn't had myself looked over in awhile.  Also, I had been tanning for about a month when it all just started to seem like a bad idea to me and I had a gut feeling I should do something about it all.  Scheduled an appointment at the Dermatology and Skin Cancer Center of Kansas City with a nurse practitioner and got in to see her.  

At that visit, she looked me over completely and found one mole that she "didn't like" and burnt a spot of "precancer" off my face (a place where I said I get a recurring/scaly zit frequently).  That spot seems to be fine.  The spot on my middle back, the mole she didn't like, turned out to be severly abnormal (not melanoma but they described it as "imminent") and required an excision.  That was quite a scare and totally changed my attitudes on tanning.  I monitor sun exposure now and don't tan, but I fear the damage has already been done.  

When I went in for my excision, I was then seeing a "real doctor", so I asked her to look me over as well.  She described herself as "OCD about moles".  She found four more moles she didn't like, and I pointed out a pinkish spot on my upper back that concerned me.  All 5 were biopsied.  The moles were all atypical but normal, and the pink spot was moderately abnormal, requiring a second excision.  She noted that I have "weird moles all over", but only biopsied four of them.  I really do have lots of moles all over (not like google pictures of 'atypical mole syndrome', but a lot on my back, stomach, and legs.  It would be nearly impossible to biopsy them all.

That was all last October.  I haven't been back to the dermatologist since then, although I do have an appointment coming up with the nurse practictioner again in a week and a half.  I think the upcoming appointment has stirred up my hypochrondria/health anxiety.  I have been checking my skin over, and have found several atypical moles (on my legs) that concern me.  Unfortunately, I wasn't doing self skin checks rigorously since the second excision because I made the mistake of letting myself feel like the worst was behind me for a few months and let it all go for peace of mind.  Anyway, I have found several moles and at least one pink spot on my back.  I am unsure if they've changed much if at all, but I would assume they've all been there for the past few months.

Does anyone else have these spots/atypical moles all over themselves?  What do you do to stay on top of it all?  Am I going to end up looking like a scarred/pincushion because of all the mole removals and excisions (better than cancer, I understand that much)?  Have I already done too much damage and this is my penance?  Just looking for other points of view and stories while I wait for the appointment.  I've been lurking in the forums and everyone seems supportive and very helpful and I wanted to join and get some perspective from people who've had similar experiences as nobody I know in real life does!

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Tina2016's picture
Replies 5
Last reply 4/26/2016 - 9:42am
Replies by: tracey25, Bradley75, WithinMySkin, Anonymous

I was diagnosed with stage 3b melanoma, unknown primary tumor in January 2016. I had noticed a lump in my left groin in November 2015 which was finally biopsied. I had never noticed any suspicious lesions and I have had yearly full body dermatology checks ever since I can remember. I have history of 5 BCC on my chest and back area over the last decade, so I am pretty diligent with all that. The report also showed that I have the BRAF gene. My PET scans have shown no other evidence of disease.

I have seen a medical oncologist and 2 surgical oncologist who have all agreed that I need to have a complete lymph node dissection of my left groin.

I had already been scheduled for a left hip replacement and the doctors agreed that I should have that done first since I was in extreme pain. That was done in February and I have now recovered from that.

My questions is...with all the advances in drug therapies, should I consider getting an opinion from Sloan Memorial, USC, MD Anderson or Moffitt?

The possible complications from complete lymph node dissection have me feeling quite anxious!

Any thoughts or suggestions?

Thank you, this has all been quite overwhelming!

Tina

 

 

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Bubbles's picture
Replies 8
Last reply 4/25/2016 - 10:29pm

With greater treatment options for melanoma, questions about what they all mean and the cellular pathways in which they are supposed to operate become more pressing and often confusing.  Where does NRAS, BRAF, MEK, ERK, CDK4 and 6 fit in????  Sometimes a picture is worth a thousand words.  I posted this some time ago...but thought it might help some of you....

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/melanoma-pathwaysa-melanoma-molecular.html

Wishing you all my best.  Celeste

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/25/2016 - 8:23pm

Hello,

I was diagnosed with Stage 1B melanoma in 2014.  I feel very lucky that i caught it this early.  I had the wide excision and sentinal node done and everything came back clear!!  I started following up with a dermatologist that took 4-6 moles every 3 months.  I did this for 1.5 years and left there to go to another dermatologist.  None of them had ever ordered blood work or xrays.  On this last trip to the dermatologist (second visit where they have not removed anything) she suggested i have a CBC w/ diff/CMP/LD and a chest xray.  I didnt really pay to much attention because everything has been going so well.  My CBC w/ diff and CMP came back perfectly normal as did my chest xray.  However, my LD came back slightly elavated at 222 (reference range is 100-220). The dermatologist told me not to lose any sleep over it but wanted me to followup with a hem/onc.  I have an appt next week.  Side note- i work out at the gym 5-6 days a week and the weekend before i had my blood drawn we did a lot of yard work and then on Sunday went on a 2.5 mile run in the heat.  My question is this something i should be overly concerned about?  Had anyone with Stage 1B had this test done?

I am trying to stay positive...as i have read on hear before most people with stage 1 arent really on here, but i am still scared :(

 

Thank you

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Jubes's picture
Replies 9
Last reply 4/25/2016 - 7:00pm

I love celeste's blog. I can't comment on it as I don't have a google account. Recently she posted a fun piece sharing the frustration of bullies, be they the conventional medicine or homeopathic type. 

I don't want to start an either/or debate. There have been so many. 

I am so lucky to have common sense doctors who give me the very latest medical science has to offer and are still fine with my seeing psychics and native Indian spiritualists, as they say they don't care who cures me as long as I am cured. 

Anyone who does not see the time and effort, intelligence, logic and expertise in celeste's excellent(free) blog, or her contributions here, is sadly missing the most informed help they could get. 

Thanks celeste!!

ps finally started remicade yesterday for the Pembro induced ankylosis spondyloarthritis and hoping for the best. Pet scan end of April but feelin good!!

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DZnDef's picture
Replies 7
Last reply 4/25/2016 - 5:32pm
Replies by: sweetaugust, Anonymous, DZnDef, Brent Morris

For any of you curious about this series showing an alternative medicine take on cancer treatments but did not want to provide your email address to watch it, all episodes are available for free the rest of this weekend with no sign up of any kind required.

 

https://go2.thetruthaboutcancer.com/agq/replay/

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Patrisa's picture
Replies 1
Last reply 4/25/2016 - 2:14pm
Replies by: DZnDef

Dear fellow fighters,

 

I just wanted to share with you words from my fathers oncologyst....

Today he had his 3month check up (and his 5th dose of Keytruda) and his largest (5x5cm subcutaneous melanoma) is now smaller than 1cm (it can not bee seen anymore, just felt under skin)...Other smaller ones have completely dissapeared.... She said he has AMAZING results (we just have to wait for CT in May to see how he s doing "on the inside (mets in his lungs).... She said she has never seen such good results in such a short period on Keytruda.....

Now, what i am aiming at is: My father hasn t changed his diet at all (he is diabetic - but doesn t follow hid diet  rigorously). What we did the moment we realized his melanoma has returned, we made him start drinking aronia (chokeberry) juice every day....I have read that it has amazing health benefits, among them also anti cancerous activity and he has been drinking it every day for past 4 months....

Maybe this juice helped him achieve such good results? I really want everyone of you to give it a go, it really can t hurt, because it is really healthy stuff, but we kinda feel it helped him achieve AMAZING (as the doctor put it) results....

Anyway, i just wanted to contribute to this wonderful forum and maybe help in a way.....

Best wishes to all of you....!

 

Patrisa

 

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rabbits68's picture
Replies 4
Last reply 4/25/2016 - 2:06pm

I spoke today with my physician about using these drugs together. I have not developed a resistance to MEK yet, but he wants to be on the anti PD1 before it happens. My scan this week shows all but original lung tumor is gone. Very happy about that. I was on Yervoy last year and didn't feel well on it so I'm concerned. Any personal experiences? Thank you

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