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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Aloha14's picture
Replies 2
Last reply 12/10/2016 - 10:11pm
Replies by: jennunicorn, Janner

I had the lympsocinigraphy yesterday and it wasn't as scary as I thought. The tracer moved pretty fast and I was only on the table for about 45 minutes.  The shots were tolerable. There were 2 sentinel nodes. Does anyone know if more than one node is a sentinel node does that mean you have twice the chance of the cancer spreading?

The Wide Excision surgery went ok after a 4 1/2 wait in the pre-op as the hospital was behind schedule. The surgeon was able to pull the skin from my side/back of my calf to the front so no skin graft needed. I didn't realize that the surgeons don't check as they go to see if there's cancer cells still left. Of course all of the removed skin went to the lab. I wonder how they know they got it all ? or if there's cases where there's still come cancer left. The lymph nodes removed were right next to each other so I only have one long scar. 

Thanks to all for your support.

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Mat's picture
Replies 14
Last reply 12/10/2016 - 11:01pm

As many of my fellow Stage IVers know, I started on ipi/nivo in January 2016 after a somewhat rough 2015.  I had a PET-CT yesterday and am really grateful for the results.  "No evidence of FDG avid malignancy."  There are no sweeter words.  To me, this is "my" functional equivalent of "no evidence of active disease".  I'll never be "NED" because I started with a heavy tumor burden.  CTs will continue to show what is either scar tissue or lesions being held at bay by T-cells.  Of course, this (my stable disease) may be temporary--and I remind myself regularly that this is likely the case.  However, I'll take it for the moment.  As I recently said to someone, in a sense, all of my prayers (related to Stage IV melanoma) have been answered--I've been blessed with the strength to meet this challenge (note: this waxes and wanes on a daily basis depending on the day and circumstances--I'm no pillar of strength) and with a great medical team to help me manage the challenge.  I'm looking forward to experiencing another holiday season with my wife, kids, family and friends, particularly when I've not been promised one.  My heart goes out to those Stage IVers that are struggling with present challenges, including Josh, Paul, Brian and Gary.  I've been there and it sucks.  You do your best to meet the challenge and press on.

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Helping Hands's picture
Replies 5
Last reply 12/10/2016 - 5:00pm

My mom has been hospitalized for 4 days with severe side effects from only her 2nd Keytruda treatment. So bad that she cannot walk, her eye lids will not stay open and she has even had a heart attack and has a hard time breathing.  She is at a local hospital so neither of her oncologist are here. She has an appointment with her radiologist at Moffitt but as it looks right now she will not be able to make it. They started her on a steroid yesterday and right now we are being told there is nothing else that can be done. Is this so?  Has anyone heard of such a severe reaction?  She has stage IV Melanoma. Looking forward to some feedback. 

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John Bruno 2613's picture
Replies 4
Last reply 12/10/2016 - 7:19pm

My brother was just called today and told he has a melanoma. I know it's very early to be writing stuff on this forum. But the doctor mentioned something about 4.5 over the phone!!! I'm reading online that number can mean 4.5 mm Breslow or something and it can be serious... I know I may sound like an idiot but I'm really not. However, he has just had a shave biopsy thus far can they tell anything at this point. Like the depth, stage, etc?!?!?! The pathology report comes back tomorrow?? I'm really praying my brother does not have some sort of aggressive or stage 3 or 4 lesion. He is only 22 years old!!!!! The doctor seemed calm over the phone and said that they just had to go in and re-excise and take it out and monitor every 2 months.  But can he have a long road ahead of him??? Please respond if you see this or know anything! 

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JoshF's picture
Replies 24
Last reply 12/10/2016 - 9:49pm

Hi guys! I'm always hoping to post something good and I'm just not getting good news. So brain MRI results showed 3 new leisons. All of them are small. Biggest is just under a CM. My LDH is now up yo 1770 and platelets at 513. So TIL is postponed so I can get gamma knife Tuesday. I'm still going to MDA on Wednesday for CT Scan and another biopsy. Anybody want to show up and punch me in the face? I'm getting scared here guys & gals. I'm more scared of possibly having to have " the talk" with my 13yo son and 10yo daughter. I can take this crap but those thoughts of them.... Which is why I'm asking for any & all suggestions. I want to be more than prepared next week when I see doctor at MDA. Celeste's blog is great and she put a ton of info on there in past for me. That was 7 months ago so anything new, exciting or showing promise would be great. I've been scouring clinical trial site but that lacks insight many of you fine people have. I've got fight in me left but these trials can have road blocks. I'm at a loss right now. 

Josh

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

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keepthefaith11's picture
Replies 11
Last reply 12/10/2016 - 2:27pm

A little bit of a background. My dad was diagnosed in July with stage 4 melanoma in July. 13 metastasis in the Brain. Ranging from 2 millimeters to 15 millimeters. He had WBRT and scans have been stable with some improvement on the latest scan. They have been suspecting a met in his abdomen as well which on the latest pet scan had shrunk. It has been about 10 weeks since he started OPDIVO treatment. A week ago he had his fifth infusion and started experiencing some mild or diarrhea. He was hospitalized and put on 60 milligrams of prednisone. The diarrhea has now cleared. He also had some heart fibrillation and low blood pressure. He is in good spirits but very weak physically. They did another brain scan today and it looks overall stable, but slightly more swelling. They feel it is time to switch to the Inhibitors at this point. I think mainly because of these new developing physical issues.

Questions:

1. Once you switch to the Inhibitors can you ever go back on Opdivo again? When you have already been on it. I feel they might not be giving the immunotherapy enough of a chance, but on the other hand his overall well-being is deteriorating. I see the point with starting the Inhibitors to get a quick response.

2. The five infusions he has already been given, does the Opdivo keep working in his body and we might see a response in a couple of weeks or so?

3. Could it be that the immunotherapy has worked on the met in the abdomen but not yet in the brain? Does it take longer for it to work in the brain?

4. And finally, does this sound like an acceptable approach? I feel that once you move onto inhibitors that is the beginning of the end since usually it does not last that long.

He is currently taking 1500 milligrams of Keppra and the 60 milligrams of prednisone. I am wondering if the fact that he is so much weaker has anything to do with the medications.

Thank you for your support. I am feeling extremely anxious and worried right now.

Annie

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Carole K's picture
Replies 2
Last reply 12/9/2016 - 7:47am
Replies by: Ed Williams, youngann

HI Everyone,

Does anyone have the link to the NY Times article someon posted here a few days ago. I can't find it. Grrr.  

I was on this site for many many years awhile back.  I could not have gotten through those tough times without it.  I am  a stage IV survior and I would like to say to each and everyone of you. what my doctor said to me many years agol

Carole , don't pay attention to Statistics.  Noone can tell you how they arrived at them or how old they are.  

Carole, just because someone else didn't  make it doesn't mean y9ou won't.  

I left the hospital that day  and the first thing I heardon the radio was I BELIEVE I CAN FLY by R Kelly.  I Believe I can fly, I Believe I can touch the sky. I think about every night and day. I believe I can fly away  I believe I can soar , I believe I can soar right through that open door. I Believe I can fly.  

NEVER EVER EVER GIVE UP HOPE. 

Love and Light

Carole

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_Paul_'s picture
Replies 11
Last reply 12/10/2016 - 8:06pm

I have a question for you all. Does anyone have experience with sub-q’s popping up on the scalp? My primary was on my scalp, and recurred twice. I have a sub-q on my shoulder, which appeared quickly, but isn’t growing rapidly. At this point maybe 1.5 cm.

However, I have about a half dozen new BB-sized lumps on my head. They aren’t inflamed and really just feel like BBs just under my dermis. Two of them are tender, the rest not. But who wants to have lumps on their head (then again who wants to have this damn cancer in the first place)?

The research lead for the TIL trial wants to biopsy the one on my shoulder, but I am tempted to ask her do the one on my forehead instead. At least the other ones are less visible. Well, I guess until my hair falls out from the chemo.

-          Paul

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susanspotless's picture
Replies 6
Last reply 12/10/2016 - 4:06pm
Replies by: susanspotless, Anonymous, Ed Williams, _Paul_

I had a PET/CT scan yesterday, my R. ordered a Cat Scan guided biopsy and I am waiting for an appointment. I will follow up with those results. Im really disappointed, I thought the PET/CT would offer definitive results as to malignancy.

susanspotless

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Curious George's picture
Replies 12
Last reply 12/8/2016 - 9:14pm

I had an annual skin check recently and the doctor saw a large, flat, slight disolored spot on my face that has been there for many years and has been examined annualy by dermatologists (not this one) for many years. There has been no apparent change to my knowledge. No one ever recommended biopsy. This doctor said there is a new test by Dermtech. This test examines for gene expressions related to melanoma. The test involved using several pieces of special adhesive tape and putting them on and puling the off the spot. A while later, I got a call from thne doctor's office saying one of the two gene expressoin tests was "positive for melanoma" and I should schedule an excision biopsy at their office to be followed two days later by a wider incision "if the biopsy does not get it all." I know nothing about any of this. This test shows up on the internet largely in promotions for Dermtech and there are only two research studies validating the test. What do you think? My own uneducated thoughts are that if this test is as good as it claims to be, everyone would be using it. But I can't find any references to it other than what I have just mentioned.  Anyone ever heard of or had this test? Your thoughts will be greatly appreciated whether you have had the test or not! Thanks in advance.

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Shaneswife's picture
Replies 2
Last reply 12/9/2016 - 2:56pm
Replies by: BrianP, Patrisa

Just a quick update. My hubby started whole brain radiation therapy yesterday and the doctors called today to inform that hes being put on taf plus mek in addition to the wbrt. We have to wait for insurance pre-approval to go through, but Novartis is going to give us enough to get by for a month in samples. Feeling pretty grateful.

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In Nov 2015 I was diagnosed 3 b melanoma on back. SLNB and CLND under armit done. Things were going fine until I noticed a small freckle on my scar area. Hard to tell if its on it or near it the way it healed. Went to derm and had it removed. The pathology came back as melanoma in situ. My dermatologist told me she never seen melanoma that small and sends all the samples out to a dermapathologist.

My oncologist said he wanted to get a second opinion at the cleveland clinic on pathology just to make sure. So Ive been waiting 2 weeks for this second opinion. I finally called today and the receptionist told me that cleveland doesnt want to give a final diagnoses until they see the whole block.

I asked politely whats the whole block and she says the whole specimen. I guess they only sent out the slides. My stomach dropped. This all happened thursday (today). Im wondering why they cant give out a diagnoses on the initial slides they received?

I just seen my surgeon on tuesday and he looked at initial path. He said we can do up to 1cm but we usually do .5cm for in situ. I told him I would be more comfortable with the 1cm and he said that was ok. Now my question is do I have to wait for the second pathology or can I go along with this surgery. In my path the dermis was clear but the peripherals were still positive. I just want it out. My surgery is scheduled for monday.

I mean can this pathology from cleveland change my course of surgery? ( the number one question i liked answered or get opinions from others)  I had a WLE in that area would they do another SLNB on me. Would anything else need to be done beside excision?  I have no swollen nodes just this initial in situ path. The sample taken was .4 mm deep and .2 x.2 wide.

This is just so crazy I have a 2 year old at home and another on the way.

Thanx Greg

 

 

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Anonymous's picture
Replies 4
Last reply 12/9/2016 - 7:05pm
Replies by: gregor913, youngann

In Nov 2015 I was diagnosed 3 b melanoma on back. SLNB and CLND under armit done. Things were going fine until I noticed a small freckle on my scar area. Hard to tell if its on it or near it the way it healed. Went to derm and had it removed. The pathology came back as melanoma in situ. My dermatologist told me she never seen melanoma that small and sends all the samples out to a dermapathologist.

My oncologist said he wanted to get a second opinion at the cleveland clinic on pathology just to make sure. So Ive been waiting 2 weeks for this second opinion. I finally called today and the receptionist told me that cleveland doesnt want to give a final diagnoses until they see the whole block.

I asked politely whats the whole block and she says the whole specimen. I guess they only sent out the slides. My stomach dropped. This all happened thursday (today). Im wondering why they cant give out a diagnoses on the initial slides they received?

I just seen my surgeon on tuesday and he looked at initial path. He said we can do up to 1cm but we usually do .5cm for in situ. I told him I would be more comfortable with the 1cm and he said that was ok. Now my question is do I have to wait for the second pathology or can I go along with this surgery. In my path the dermis was clear but the peripherals were still positive. I just want it out. My surgery is scheduled for monday.

I mean can this pathology from cleveland change my course of surgery? ( the number one question i liked answered or get opinions from others)  I had a WLE in that area would they do another SLNB on me. Would anything else need to be done beside excision?  I have no swollen nodes just this initial in situ path. The sample taken was .4 mm deep and .2 x.2 wide.

This is just so crazy I have a 2 year old at home and another on the way.

Thanx Greg

 

 

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Aida Ballesteros's picture
Replies 2
Last reply 12/8/2016 - 2:56pm

My dad was diagnosed with a melanoma in situ on september. We are back with the DR and now he had another black mole removed, and we are waiting for the results. Hopefully its just displastic, I just wanted to get it off my chest im really nervous
Love

Aida

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Diadi-1707's picture
Replies 1
Last reply 12/8/2016 - 9:17am
Replies by: keepthefaith11

Hello,everyone!I strongly need your advice !My husband has got melanoma stage 4 with various mets in nodules and brain.As we live in Russia the access to new drugs is impossible.But this is another story.In March when the mets in liver were found we decided to collect money and we did 4 shots of keytruda.But we stopped because of lack of money.In July we checked the whole body except for brain.All mets in liver have gone but nodules stay the same.In October we found 20 mets in brain and again various nodules.Did Gamma-knife twice and on the12of November did Opdivo.On Saturday we will plan to do the 3 shot.But yesterday my husband felt himself very bad.Diziness,weekness,vomiting once,some memory problems.Our blood counts drop twice.Our doctors told us that this is the end.That no use to do Opdivo or Ct as our lymphosytes are dropping and this is the marker that opdivo does not help.Please,I need your advice/You are more experienced than our doctors.What to do?Does anyone have the similar situation?

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