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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snow white's picture
Replies 7
Last reply 9/26/2016 - 7:19pm

So Dad is going to City of Hope tomorrow.  But, I don't know if its with a Melanoma Specialist.  Can anyone recommend an excellent doc in the LA area?

Much Appreciated!!!!!

Jennifer

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Elana's picture
Replies 2
Last reply 9/26/2016 - 3:46pm
Replies by: Elana, WithinMySkin

Hey Everyone,

I was diagnosed with Stage 3B in late June 2016. I joined the interferon/ipi vs keytruda clinical trial and was randomized to the standard arm and went with interferon. I know that decision is somewhat controversial but that's not what I am posting about here.

After 2 weeks of high dose interferon infusions we had to hold because my LFTs were off the charts. My AST was in the 500's and my ALT was in the 200s. A week later one of my LFTs was still 5x the normal limit so we decided to drop from the trial in order to not miss out on 2 full weeks of HD infusions (which my oncologist felt was the most important part). We waited 4 more days until my LFT's were in the 80's (ALT) and 60's (AST) to restart treatment. That was this past thursday 9/22. They restarted me on a 33% dose reduction (21 million units or something like that). 

Yesterday, after my infusion when I was leaving MGH, I felt like I was having epigastric pain. It felt like a lot of pressure or gas. I thought maybe it was heartburn and I took some tums and rested for a bit before I went to ultimate frisbee practice where I ran around for 3 hours without any problems. Then last night when I went to lay down in bed I felt this overwhelming pain and pressure in my epigastric area. It was not a burning sensation like heart burn. It kept me up most of the night and eventually I realized it hurt more on my right side. This morning it hurts to walk around and breath deep and the pain is dull but hurts more on my right side, just about where my liver should be. I don't have any jaundice, nausea, or any other symptoms. My stools are light brown and not clay colored. The pain goes away when I sit upright. I told all this to the nurses and a doctor took one look at me and said I was fine. 

Mostly I am just wondering if anyone else has ever had these symptoms?  What it might mean? Should I ask to get my LFTs re-checked? I have my last day of infusions for the week tomorrow.

In general I have been doing great with the interferon treatments, my oncologist cannot beleive it. I am 29 and was in the best shape of my life when I was diagnosed. I have continued to stay active and only really ever have symptoms on the first 2 days of treatment, and they are managed well with excedrin/tylenol/zofran.

Any info people might have is greatly appreciated. Thanks!

Best,

Elana

If you are interested in my whole story, I have been writing a blog: https://schwamingcancer.wordpress.com/

Elana

Stage 3B 6/2016

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/26/2016 - 1:47pm

Hi my name is Alexis, i am 23 years old and was diagnosed with melanoma when i was 13. i've had numerous moles removed over the years that had traces of melanoma in each, and as the years progressed, so did the amount of melanoma found. when i was 18 i had a mole removed on my left breast. out of all the surgeries, it was one of the largest found melanoma underneath the mole being stage t2b. i was to get another surgery done on the same location to further get the rest of the tumor out. long story short, i got cold feet and never went back to finish surgery. five years later, which is presently, i have pains in my left breast each day, i notice lumps have started forming, and the shape has changed some. on top of that, i've been having a lot of issues with my skin in general, from iching raising moles to red rashy arms. can someone inform me of how long i have to get better on my own with natural remedies? or is it immediate to get it checked out again and possible surgery? please, any insight would be appriciated. 

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Momofjake's picture
Replies 7
Last reply 9/26/2016 - 1:06pm

Quick question,

Jake is finally debating ipi. I felt a little inspired at 4am:) If he is going to give a new treatment a shot, wouldn't a combo be better?? Why not ipi/nivo?? Or what else? He has done: interferon, biochemo, rafiation(tons), pembro, and TAF alone due to side effects. I read his scan report. It's pretty darn good compared to 4 mo ago! It feels like he has a shot at clearing this out even more if he tries a combo. I think he is about to give up, go natural and feel good as long as possible without hospitals and feeling crappy. I want to give him some hope❤️

Thanks all--Kerri

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CindyCo's picture
Replies 7
Last reply 9/26/2016 - 12:07pm

I was wondering if anyone could give us advice as to whether to have a surgical oncologist or colorectal surgeon perform my mother's surgery.  She will most likely need an APR resection and inguinal lymph node removal.  We have an appointment with a colorectal surgeon (who has great credentials and used to be chief of surgery) this Tuesday, September 27, but we cannot meet with a surgical oncologist until October 4 (he has a packed schedule because he is in demand). 

Because we are currently inclined to take the earliest surgery possible, does anyone have any insight as to whether we should hold out for the surgical oncologist or vice versa? 

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WithinMySkin's picture
Replies 26
Last reply 9/26/2016 - 10:46am

Hello all my fellow fighters! I feel as though we've had some seriously tough times lately. Reading through the board can be so difficult some days because my heart hurts when there is bad news. I know the flood of emotions that you all go through, and I'm right there with you. The stress, the anxiety...I've been there, and I will be back there soon with my next scan in October (fingers crossed for good news!) But I wish I could reach out and hug every single one of you who are going through a tough time right now!

 
So I started thinking. How can I help? How can I make this situation better? I know a lot about my own anxieties, but how can I help other people feel less anxious about what we're all going though?
 
Then it dawned on me. I have worked for almost a decade in the operating room as a neurophysiologist and an anesthetist. That's what I really know best, and for most people surgery is terrifying, even though it's really quite normal for me. So let's start there.
 
What scares you the most about surgery? What do you wish you knew about general anesthesia or the O.R. that would help calm your nerves? What questions can I answer for you all? How can I help?
 
*Please refrain from asking questions specific to your condition. I don't know everything and I'm not your doc, but I'm always here to give you an internet hug! And if you don't want to post here, you can always reach me at my blog.
 
Hope all is going well in your battle and keep fighting!
Lauren
 

WithinMySkin

www.Withinmyskin.com

 

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MoiraM's picture
Replies 4
Last reply 9/26/2016 - 2:14am
Replies by: MoiraM, debwray, Polymath

I joined a forum in the UK because my melanoma specialist nurse hinted that she would really like me to. The forum is an obvious first port of call for people with melanoma in the UK, because it is part of the website of the biggest UK cancer charity. Even so, it isn't very active and there was no one contributing with endocrine side effects of immunotherapy.

My problem is, what do you say to people who have been diagnosed with malignant melanoma (or whose relative has been diagnosed with it) and are absolutely convinced that they (or their relative) have been condemned to death?

It doesn't seem to have any correlation to the patient's staging. Often it is someone who is stage 1 or stage 2.

I guess I could just not reply but that seems mean when they are reaching out. Also, it is often only after they reply to my response that I find out that they are not being swayed by facts or logic.

 

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/25/2016 - 11:32pm
Replies by: Patina, Anonymous

Hello:

I recently had a melanoma scare.  Everything is fine now.  I want to get continuous screening from a dermatologist that is a melanoma expert.  All dermatologists I found are mainly cosmetic.  Any recommendations of melanoma dermatologists in LA or the OC area?  Or Southern California?

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Redlo8's picture
Replies 5
Last reply 9/25/2016 - 11:24pm
Replies by: Redlo8, Anonymous, MoiraM, debwray

Hi Everyone,

 

My wife is 55 and has Stage 4 Metatastic Melanoma, She has been on Keytruda for 18 months. It is doing its job very well with all "spots" gone or shrinking significantly.

She has a few of the common side effects like tiredness, skin irratations etc but one that seems a little less common is a lip reaction.

Her bottom lip (top lip is fine) has swollen to twice its size and is constantly bleeding or forming a blood blister, overnight it scabs up only to fall off in the shower and start the process all over again.

While not extremely painful it certainly looks very nasty. Along with this her gums also regularly bleed and she has bad breath from the constant blood in her mouth and the innability to brush her teeth very hard.

I have searched all over the internet for other peoples's stories that may offer a solution but have been unable to find many references to this ailment.

Her doctors have prescribed so many different creams and ointments, speciality bandages etc but nothing has made much difference, if anything they make it worse. The most effective product to date has been petroleum jelly, it is not a cure for the lip but it seems to hold it at the current level for a long time.

She has had this now for approx 12 months with it steadily getting worse.

Has anyone had this issue or know of a product that may help the situation? I often wonder if it is psoriasis (she got this on her hand and arm when Keytruda was first injected) but this cleared up after using a product called Moo Goo. Unfortuantely this product hasn't helped her lip.

Any info would be greatly appreciated, and if anyone would like some positve news on Keytruda or would like to ask questions please feel free to ask.

Kind Regards

 

 

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Anonymous's picture
Replies 5
Last reply 9/25/2016 - 3:03pm
Replies by: Ed Williams, debwray, Anonymous, MoiraM

Hi,  I have been scanning these boards and have been inspired and immpressed by the knowledge that exists here.   I know I probably have a very unique situation that probably no one can offer much help with but I wanted to ask in case.  Here is my background.  I had a legion on my arm removed in 2008 that came back "atypical spitz nevus" with heavy lichenoid inflammation.  I had it further exised and have never gave it much thought since.  In 2015, I had a suspicous mole on my toe removed that they pathologist kept sending off for 2 and 3rd reviews.  However, when the final consensus came back it was determined it was fine.  That place on my toe grew back (was a shave biopsy) and the dermatologist did not seem concerend.  However at my last 6 month checkup, he looked at it and said he would have it excised completely since it continued to grow back and given the fact that I was pregnant.  So, I went to the surgeon to have this done.  However the surgeon recommended against the removal due to risk to the baby.  So, I decided to wait till after delivery.  Over a year ago, I had read of the Oncoblot Test (an early detection cancer blood test) and decided to take it.  Well, to my suprise the results came back last week Positive for melanoma.  The blood test is suppose to be able to detect a tumour that is 2mm or larger.  Which is why they call it early detection, however from what I am reading on melanoma 2mm does not seem that early.  So, now I have this information that I have melanoma but am not even sure where.  Plus the fact that I am 8 months pregnant.  I thought about trying to get into MD Anderson as I feel my case is unique.  I am not sure what to do.  I did call the surgeon about my toe and they indicate I can not be seen untill November 21! 

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CindyCo's picture
Replies 13
Last reply 9/25/2016 - 7:25am

My mother was diagnosed on September 6 with Anal Melanoma.  After CT/MR/PET scans, we have learned that the mass is 4 cm and that it has spread to her inguinal lymph nodes, but nowhere else.  The doctor told me that she has 10-15 months due to micro metasteses, which broke our hearts.  However, I see that there are a lot of long term survivors on this message board. 

Does anyone know of a survivor with a mass as large as 4cm? Even the cutoff on the drop down menu is 4mm, not cm. 

My mother is also afraid of an APR, especially since the doctor told us that he wouldn't recommend it since it won't extend her life. 

We are part of Kaiser Permanente, which does not seem to be very specialized in this area, but since it's a closed network I'm having a difficult time trying to get them to agree to giving her a second opinion at one of the bigger institutes I see all over these boards(EX: Dana Farber, MD Anderson, Sloan Kettering).

We have also put her on a vegetable-heavy vegan diet for the time being.  We figure this can't hurt.

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Momofjake's picture
Replies 9
Last reply 9/25/2016 - 7:01am

Hi all,

Took me awhile. Jake was disappointed in his scan results, but he got a "stable disease". It's not too bad. Hard part is the dr says the TAF has hit it's plateau and he wants Jake to start ipi now. Jake says he wants to try MEK. I don't even think it's an option. Our onc thinks the TAF alone only lasts an average of 6 mo and Jake is 4 months in. He says there are not other options, just ipi. Jake doesn't want ipi. Hates vitiligo. Onc also says the cancer can come back aggressively when it does. Jake is still very tired but looks good. Clear lungs, almost clear spine and so much improvement really shows! He played tennis today:) He also apologized to me on the way to his scans...it was emotional for him. Sept 12 marks two years. 17-19 yrs old sick. Hoping the TAF hold it back:) 

thats our news....how are you Josh????

Thanks for the scan support:)'Kerri

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/24/2016 - 11:16pm
Replies by: debwray

I had a mole removed from my neck a little over a week ago. It was itchy and inflamed and had grown recently. The doctor put in the orders that they were trying to see if it was melanoma. I think she used the initials AMM. I got my printed results today and I'm kinda confused. The nurse called and said my mole was basically growing scar tissue; however, I'm unsure why an uninjured mole would do this. These are the pathology results that were written down: Desmoplastic compound nevus. p16,

MART-1, and Ki-67
immunostains examined.

GROSS:
Specimen labeled right neck is a 0.6 cm in diameter x 0.4 cm in depth
punch of tan skin with a 0.4 cm central brown papule. Entirely
submitted in 1A - three fragments.

Is this something to be concerned about or get a second opinion on? 

Thanks for the help. 

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Replies by: Buddy0513, Hukill, Maria C, Bubbles, Anonymous, debwray

Hi everyone,

I posted a few days ago about my mom having a horrible experience with the one hospital and how we were waiting for a second opinon. Today we went for that second opinion so I thought I would follow up with you all.

The melanoma specialist immediately stated he did not see the Keytruda being the best fit for her, especially since it is mucosal melanoma and melanoma is aggressive. (He was also shocked at our treatment in the other hospital). He gave us the options of Nivolaumab and Ipiimumab or Nivolaumab, Ipilmumab and Saragramostim (which is a trial). He did not state anything other than he wanted to start treatment right away since it has been almost 2 months since this diagnosis and she has not received care and is in a lot of pain due to the location of the large tumor.

Has anyone else had any experience with the combination of Nivolaumab and Ipilimumab? I am trying to do some research for her just to get an idea what to expect. As for the trial, I can't seem to find much on this Saragramostim either...(other than the very scary side effects that my mom doesn't feel 100% comfortable with!)

Overall, we had a better experience at this hospital, we were immediately given a social worker, friendly staff and the center was packed with patients (which I took as a good sign because the other hospital was relatively empty!)

 

Thanks again for all who read this...We are only beginning the journey and are absolutely terrified at this point, more than ever before, since we kept getting such negativity that the drugs wouldn't work etc..I'll keep everyone updated as I can!

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Hi gang. I've been on Social Security Disability for about 5 years due to melanoma. A stage III diagnosis is an automatic yes, and I was Stage IV when I applied. Anyway... I have THANKFULLY been NED for 4 and a half years, and have simply been living my life without the stress of having to hold down a job. Hubby makes a good income, and my disability helps us pay the bills.

Well, SS sent me a re-evaluation form to decide if I still need to be on disability. So I'm a bit afraid that they will determine that I'm no longer disabled, even though I'm still considered a stage-IV patient. (I also have lymphedema, which lately has been more of a hindrance than the melanoma has).

If you or someone you know was on SSD for melanoma, and lost it... would you let me know? OR if you've been re-evaluated, and they let you stay on it... please also respond. It would help with my nail-biting!

Love to you all!

Jackie Doss, Stage IV NED... Dallas, TX

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