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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debwray's picture
Replies 12
Last reply 12/14/2016 - 7:02pm

Hi Folks,

Went for dose 3 of the combo yesterday. Bloods came back with AST and ALT over 3 times uppe rnormal limit and GGT at 94. ALP slightly raised. LDH - had gone to 760 over the 550 ULN used in UK ....so now on 50 mg prednissolone daily till Thursday when I go for retest . Crossing my fingers liver results will be calming by then.

Question is-(mets are in my liver - 3 that can be seen on CT and numerous others detectable by MRI.)

Does anyone know if LDH can increase in response to autoimmune hepatitis ?

Would LDH increase if IPI/ Nivo was at work damaging the cells of the tumours ?

I know it is early days and am probably lucky they caught this before I had infusion 3 as that would possibly have had me over 5 x ULN and then - no more Ipi for me for sure. I guess we are trying to hit the goldilocks zone of ramped up immume system- not too hot and revved up that it damages essential organs- and not too cold that it has no impact- we want just enough to kill the melanoma.

Any words of wisdom out there? Have been told might be an idea to pack a bag on Thursday on the off chance they may keep me in if numbers are still going up.

Thanks Deb

 

 

 

 

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Anonymous's picture
Replies 9
Last reply 12/14/2016 - 8:16pm
Replies by: Anonymous, Linny, jennunicorn, Janner

Hello, my husband was diagnosed with stage 3b melanoma in July 2015. He had a lump under his arm that turned out to be melanoma, no primary lesion. He had a tlnd and all nodes removed were clean. So far he has been NED, not a day goes by that I  am not filled with fear and anxiety that the next scan will be the one that's bad. I was hoping that someone out there might have suggestions on how to get through these feelings. I want to be helpful to him, I don't want him worrying about me! 

Amie Taylor

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A. Right mid paraspinal: Malignant Melanoma without ulceration, clark level 3, 0.45 mm in breslow thickness, with a mitotic index of 0 (pTla).

Tumor Anatomic site: Mid paraspinal.

Histologic type: Superficial spreading melanoma.

Maximum tumor thickness: (Breslow) 0.45mm.

Anatomic level: Clark Level 3

Ulceration: Not identified.

Margins:

Peripheral margins uninvolved by invasive melanoma. Distance of invasive melanoma from closest peripheral mergin: 1.4mm. Peripheral margins uninvolved by melanoma in situ. Distance of melanoma in situ from closest peripheral margin: 0.9mm. Deep Margin uninvolved by invasive melanoma. Distance of invasive melanoma from deep margin: 0.5mm.

 

Mitotic Rate: not identified

Microsatellitosis: Not identified

Lymph-vascular invasion: Not identified

Tumor infiltrating lymphocytes: Not identified

Tumor regression: Not identified

Growth phase: Radial and focally vertical.

Additional patholog findings: Dermal nevus.

 

Let me know if you need any other info!!!!

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Replies by: Anonymous

How do i upload a scanned pathology report into the forum so that you guys can read it or do i have to write it the entire pathology report myself??

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Replies by: jennunicorn

file:///C:/Users/tmb/Desktop/Matt's%20Medical.pdf

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lisa joy's picture
Replies 10
Last reply 12/12/2016 - 6:57pm
Replies by: Janner, Anonymous, lisa joy, Ed Williams, Jubes, Kim K

Hi everyone, 

I have a question. I was diagnosed with Stage 1 (.75mm) melanoma in June 2016. I had a WLE along with one lymph node removed as a proactive measure. I also had a full body PET Scan, brain MRI and CT scan. All came back clear NED.

I see my dermatologist every three months along with my surigical oncologist. My surgical oncologist mentioned that I will probably have another PET scan in one year. Is this typical for my stage? I am worried about the possible radiation effect on my body having these scans. 

My mom was diagnosed with Melanoma in-situ about 20+ years ago. My dad has had basal and squamous places removed but No other cancer in my family. 

 

Thanks in advance for your input. 

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Sam33's picture
Replies 10
Last reply 12/15/2016 - 1:26pm

UT MD Anderson Cancer Center researchers have discovered that the human gut microbiome may boost immunotherapy. http://bit.ly/2gC2yFr 

 

Eating home made yogurt, pickles (bifidobacteria) and complex carbs, legumes (ruminococcaceae bacteria)  will help getting better results, i guess.. 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/11/2016 - 3:33pm
Replies by: Janner, Aloha14

Just got my pathology back. It came back as severely atypical meloncytic cells, consistent with melanoma in situ. Is this melanoma or cells that had a tendacy to become melanoma. Either way im having a wle. Anon

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Aloha14's picture
Replies 3
Last reply 12/11/2016 - 5:51pm

My paperwork said I can take a shower as of today. I'm supposed to remove the gauze wrapped around my lower leg, and the pieces of  thick guaze directly over the stitches. Have to keep the area dry and they suggested I use a tegaderm. Wouldn't that pull on the incision since it's sticky? I have surgical glue over the lymph node incision, am I assuming correctly that it can get wet?

The lymph node incision is about an inch from the crease in my leg. However, my leg is swollen for about 6 inches below the incision. I wonder if it should be so swollen? I'm a bike rider and have good muscle tone but surprised to see the skin just drooping. 

Instead of a breathing tube I had an SGA -Laryngeal Mask Airway. It's like a mask placed in the airway under air pressure. Supposedly you don't get a sore throat like when having a breathing tube. But the muscles in the back of my throat are killing and so is my neck. It was under pressure for about 2 hours. Has anyone had this during surgery?

 

 

 

 

 

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Patrisa's picture
Replies 2
Last reply 12/12/2016 - 1:09pm
Replies by: Linny, Scooby123

Hello warriors,

do any of you go to sauna?  I have read a lot about benefits of infrared sauna, sounds kinda legit to me....

I'm more curious though about dry finnish sauna, my father has it in his house, we use to go all the time, but are now kinda scared to, just because its sooo hot from outside in, and kinda think that all that heat on the skin can't be good, or are we in the wrong?

Anyway, infrared sounds like a great complimentary method to treatment, what do you think?

Be well everybody!

Patrisa

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Aloha14's picture
Replies 5
Last reply 12/11/2016 - 2:48pm
Replies by: Aloha14, 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 22
Last reply 12/13/2016 - 8:48am

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 7
Last reply 12/12/2016 - 3:58pm

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 9
Last reply 12/11/2016 - 3:22pm

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 35
Last reply 12/13/2016 - 4:57am

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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