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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sallyandree's picture
Replies 11
Last reply 7/11/2016 - 2:03pm
Replies by: sallyandree, Patina, Ed Williams, Bubbles, MoiraM, Anonymous

My significant other has Stage VI melanoma and has been on an Odivo and Yervoy regimen since the beginning of April (4 treatments, given every 3 weeks).  I cannot recall what the dosage is that he has been on, but his doctor said that he has been taking the maximum amounts.  He has reached the end of the regimen, and we are taking him in for a PET scan on Monday to see if it has been working.  On Wednesday he will be starting a regimen of Opdivo every two weeks (a total of five treatments).  Has anyone else been through this regimen?  I am hopeful that the side effects from just taking the Opdivo with no Yervoy will be less hard on him than the combination of the two.  The melanoma has traveled from the original site (his back) to his stomach, and it is difficult for him to eat much, let alone that the medicine has him throwing up daily. 

Thank you, Sally

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gigembritt's picture
Replies 4
Last reply 7/9/2016 - 10:24pm
Replies by: gigembritt, Janner

Anyone who has dealt with MD Anderson.... I haven't even had my first apt and I'm already getting apt info from the lymphoma center too?? Is this standard? I haven't even gotten blood work done. Just one little shave biopsy.  Would this be in regards to SNB if they decide to do one?  Just seems odd to scare me like that! 

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Replies by: MoiraM

Hello,

I am wondering if anyone has any knowledge or experience with  immunosuppressant drug treatment. I have had dozens of moles removed, they were all dysplastic. My melanoma was diagnosed as 2A, ulcerated and a high miotic rate. I have been NED for 7 years and while I don't stress over re-occurrance I do worry about the risks of  immunosuppressant drug treatment.

 I have had chronic idiopathic urticaria ( daily hives) and angio-edema ( subcutaneous tissue swelling) since 1983. Angioedema causes large, disfiguring facial swelling, the hives are hot, itchy and some are painful. I have head two long remissions, first 15 years, then 12 years. My last flare was 3 1/2 years, the current one 2 years. Antihistamine treatments have failed as well as prednisone, and just recently a prescription drug named Xolair, a protein that resembles one type of human antibodyI am afraid to take  immunosuppressant drugs because of the risk of the malignancy they all carry.

I'd appreciate any help anyone here might offer from experience or knowledge, thanks!

 

susanspotless

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lscarr's picture
Replies 4
Last reply 7/14/2016 - 5:19pm
Replies by: Landlover, Anonymous, Bubbles, MoiraM

Hi All, this is my first post, I'm 3b. I joined the party on 4/28/2016, primary mole on temple came back pos for S100 (1.4mm, no ulceration); 5/19/2016 OR SLNB one pos, one neg (both nodes were in the parotid gland, whose tissue was negative) and WLE (negative); 6/21/2016 paritodectomy (1 node pos, 2 nodes neg, gland tissue still negative) + level 1 and 2 LN neck dissection (all 16 nodes negative).  PET and brain MRI clear so far. 

Need to decide on whether to just start ipi on 7/18/16 or to enroll in S1404 which gives me a random possibility of ending up with pembro.  S1404 will also provide PD-L1 testing.  Again because it's random, I won't know until I enroll whether I'll get the pembro.

Questions for the group:

1) Is anyone out there in this study and if so, which arm?

2) in general does anyone have firsthand comparison between ipi and pembro side effects?  I know it's different for everyone.

Thanks all for your inspiration and communication.

susan

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Anonymous's picture
Replies 7
Last reply 7/11/2016 - 4:46pm
Replies by: gigembritt, Janner, Anonymous

Hi all!

I had a mole on my leg biopsied 1.5 weeks ago. The path report came back as stage 1a, 0.44cm deep, no ulceration, mitotic rate of 0.

A few days ago I met with the surgeon who will be removing the mole. He said that he won't know the exact stage until the entire mole is removed which is standard as far as I can tell.

Any chance anyone out there knows how often these measurements change drastically? Should I put any stock in the initial results?

Thanks,

32 and a little scared out of my mind

Alc

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Bubbles's picture
Replies 4
Last reply 7/11/2016 - 12:18pm

A Phase 1 trial with pembro combined with MGA271 (Enoblituzumab - an anti-B7-H3 monoclonal antibody) is recruiting for folks with a variety of solid tumors, including melanoma, after having failed at least one immunotherapy and having measurable disease positive for B7-H3.  It is phase 1...so it's not a done deal...but everyone gets the meds. Many more people are being helped by ipi and anti-PD1, which is great...but there are those who fail to respond...so if you are in need...this might be something you'd like to talk to your doc about.

Here's the link to the info I put together:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html

And, yes, jpg...before you get your britches in a bunch...this is a link to my blog.  It is a post I put together.  It contains three links within...more than MPIP spam blockers will allow...as well as photos of slides (not possible for me to upload here)!!

Check it out if you are interested. For what it's worth.  I wish you all well.  Celeste

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Hello All - I'd like to start by saying how thankful I am for this forum. Whenever I have a question, this is the first place I go to seek others opinions.  There is a wealth of information and support in this group.  

Heres my question. My husband had 7 rounds of keytruda and treatment was stopped for 2 reasons. 1) he got severe diarrhea & 2) his scan showed no reason to continue - which was awesome news!  He took steroids for the diarrhea and all was back to normal. His last dose of keytruda was on May 10th. Well, starting on July 4th he started experiencing the same diarrhea just like back in mid May. Is it possible for the keytruda to still be in his system?  I'm going to contact his oncologist and GP on Monday if it does not subside by then. 

Any others have a similar experience?  

Thanks in advance. 

Julie

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Maria C's picture
Replies 1
Last reply 7/8/2016 - 10:43pm
Replies by: Patina

Hi there - 

Has anyone had an experience where their SRS treatment did not succesfully "zap" the brain met out? It appears I have had 3 out of 7 brain mets that did not enter death stages, and will soon be cyberknifed after first being gamma knifed months ago....

Has anyone else experienced brain met radiation in the same spot...?

The good news is that it was not 2 new brain mets (totaling 9), but 2 old ones that never "died" that have been showing up in my latest MRIs.

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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jvictoria's picture
Replies 14
Last reply 7/11/2016 - 12:57pm

Hello everyone, I’m back for the next phase of my journey…

I was on the Ipi vs Nivo trial for 7 months until the cancer came back in my arm at the site of my SNB.

I had recent scans and a lung nodule that was not growing during the trial went from 4mm to 10mm. Docs suggested a lung biopsy to see if it’s melanoma. Did the biopsy (!!!Ouch!!!) Still in pain two weeks later. Unfortunately, results came back inconclusive.

Now, Doctor (A) suggests wait and see approach; scan in 2 months then possibly biopsy again or something else, depending of what shows up.

Doctor (B) suggests removing the nodule via thoracic surgery and be done with it.

I kind of have this uneasy feeling that melanoma is lurking… I guess we probably all do angry

So gang, any thoughts on A vs B? Does anyone have any experience with thoracic surgery to remove lung nodules… what’s the good, bad and ugly?

Thanks!

Juan

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CHD's picture
Replies 2
Last reply 7/8/2016 - 6:57pm
Replies by: CHD, Kim K

So PET CT is clear except it lit up around one ovary and slightly into the vaginal area.  PA says this is "normal," though.  I don't get athe official report of results until my followup visit next week, but I am wondering why it would be normal for an ovary to light up on one side?  This is my third PET CT in 3 years and this did not happen on any of the others, though last year there was some kind of  "soft tissue anomaly" on the left, as well as a benign-looking left ovarian cyst on a regular CT, which did NOT light up on the followup PET. 

As someone with a history of vulvar melanoma, the area just seems a little close for comfort, but I am all for thinking it's normal!!  I am also a little confused.  And of course it is going to bug me until my visit next week!  Any ideas?  Do certain areas normally "light up" more than others?  Are ovaries one of them?  Do we know why? 

Cheri

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Patrisa's picture
Replies 4
Last reply 7/9/2016 - 10:33am

Hey guys,

do you think it is likely that you get an almost complete response on keytruda, just some minor focal activity in sub q met and total disolvment od lung mets and pet/ct that showed no new mets...in just 3 months! And after only a month a potential new met? Can keytruda work so wonderfully on old mets but still a new one can appear in such a short period of time?

i know everything goes with this beast, but can't really understand that you can have a complete response on one hand, and some new stuff on the other...

all in a month?

My fathers next pet/ct is in august, but i can't wait that long to know... What scared me was a marker which in higher than normal (s100)...

it could be nothing, but i'm worried...

another q, if something new poped up, does that mean that keytruda failed? Cause it didn't, it worked wonders since Jan this year...

thank you...

Patrisa

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CharmaineD's picture
Replies 3
Last reply 7/9/2016 - 10:01pm
Replies by: susanspotless, CharmaineD, Anonymous

I know for many people on here they have travelled a long road with Melanoma but I am just sharing this for others like me to whom this is all brand new and who also have a decision to make. Being told you have a suspicious mole is very scary. My dermatologist decided to not excise but to monitor again in three months, I just did not feel comfortable with this and for two months it caused me anxiety. A week ago I decided to take control of things and requested it to be removed. Removal date set for a months time but I got lucky and on Tuesday got the call from the surgeon they had a cancellation and did I want to come in. Of course I did. It was a big mole and with the margins I was set to lose a relative chunk of skin on my back. However it was really painless and was over in half an hour. Small needle pricks and felt a bit of pulling and tugging, but absolutely no pain. Today it is a bit uncomfortable lifting or stretching with my arm because of where the stitches are situated but it is really not a big deal. Just glad it is done. A bit nervous waiting for the results but I feel I have taken control of the situation. I amnot a fan of unnecessary surgery but the watch and wait approach was not working for me. I know everyones experience is not the same but if excision worries you at all, my experience is it was really easy and painless. 

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keepthefaith11's picture
Replies 7
Last reply 7/8/2016 - 1:45pm

I just got off the phone with his doctor in Europe. She said he has 13 brain Mets that they could see on the MRI. They are between 2 millimeters and 13 millimeters. She started talking about whole brain radiation therapy. Apparently they don't do gamma knife at that hospital. There is however a hospital in the country that does it, but usually for no more than three mets.
I kept pushing and she agreed to send his scans down there for a second opinion and see if they could do it for him. Not sure this is going to work out. It is so frustrating when you do not have options.

They are doing a PET CT scan to see if there is any additional spread. His blood work was completely normal. I am assuming they checked the marker for cancer in his blood. Forgot to ask about that.

She wants to start whole brain radiation on Monday, but she said she would call me tomorrow when she finds out about the second opinion on gamma knife.

Does anybody know if whole brain radiation would get rid of tumors this size? And can they then do gamma knife on any remaining tumors?

She said they usually start targeted therapy or systemic therapy 2 weeks after radiation. Would that still give you the abscopal effect?

Thank you for your help everyone!!

Annie

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ashley_k's picture
Replies 7
Last reply 7/17/2016 - 10:00pm
Replies by: ashley_k, Anonymous, stars, MoiraM

So, strange question, does anyone recognize or celebrate the anniversary of a diagnosis or treatment?  a year ago I was diagnosed and this past year have been telling myself that reaching on year of NED is something to celebrate.

My baby is not quite a year old but is healthy.  It is something I am so very thankful for, a true blessing.  I worry since she has fair skin like me (not like the husband).  

This past year I've had 15 biopsies, one melanoma, two benign and the other 12 mildy atypical.  Every three months I go through the phase of taking and comparing photos, searching for the outliers and tracking any odd symptoms I may be experiencing.

I'm still terrifled of being in the sun for long periods, wear sunscreen and hats religously and even spent a ton of money on expensive long sleeve & swim tights with spf protection but I'm stlil afriad of being in the sun.  

Does the fear ever go away?  My mother asked me if I was ever going to have a tan again.  She asked when I would wear shorts and told me that the sun is 'safe' before 10am and after 4pm.   My husband tells me she is from a different 'generation'.

The good news is that insurance covered genetic testing.  Apparently I do not carry any of the common melanoma related gene mutations that the company was able to test for.  I am hoping that means good things for my kids and I do not have to be as concerned, right?  I think it also means melanoma was probably related to UV exposure most likely, right?  I served in the Navy and flew in airplanes and wonder if I may have been exposed to more UV/radiation? 

 

Ash

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