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.

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Hi, I am new to this forum and was recently diagnosed with stage IIIc Melanoma in December 2016. I was just wondering if anyone has any reviews of Yervoy/ipilimumab as adjuvant treatment to help prevent reoccurance? This is what is being offered to me as a treatment option and just want to hear from some real people instead of just what you read online in statisitics and press releases. Below is my Melanoma story to date and would love to also hear form people in similar situations and stage. 

In spring 2015 when I was 35 years old, I had a melanoma in situ removed from my left upper back. Now in December of 2016 I was diagnosed with metastatic melanoma in left axillary lymph nodes. I had MRI, PET/CT and all they could find was the one left axillary lymph node area with cancer (4 matted nodes). No other primary tumor. It seems like this has made staging difficult. I underwent lymph node disection about 3 weeks ago and am healing up fine. I've been having doctors tell me about spontaneous regression and they think this may be what happened to my primary tumor. Or it could have even regressed before 2015 when I had the original removed making it appear to be in situ by the time it was removed. All theories, but even my dermatologist suggested the same yesterday when I was there for followup. 

Please, I would love to hear from others who may have been told similar or who have used Ipilimumab and hear your experience with the drug.

Thank you in advance for your comments!

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Julie in SoCal's picture
Replies 7
Last reply 2/5/2017 - 5:49am

Good morning Friends!!

It's been awhile since I've posted.  It's been a long couple of months.

I have just finished the Hep C meds and after blood tests, should be considered "cured" of Hep C (isn't that amazing!?!). While on the Hep C meds though, my joints and bones increasingly ached and became swollen.  The Liver Doc I was seeing for the Hep C had never seen anything like this.  But we (me, liver doc and Rock Star Mel Doc) figure somehow the Hep C treatment triggered an inflammatory arthritis.  The plan was to continue the Hep C meds and the treat the inflammatory arthritis with NSAIDs and pain killers.  Unfortunately, I'm now essentially handicapped as I can barely walk or sit or stand without a great deal of pain.  If one joint doesn't hurt another does.  I am the tin woman in the morning.

So on Monday, I'll make a pilgrimage up to Santa Monica see the Rock Star to talk about what's next.  I still have a stable and small lung met, and another intransit has popped up, so Mel is still alive and well (albeit small and slow).

My original plan was to join a clinical trial for folks who have progressed while on Ipi / Pembro.  I figured that this was my best shot of kicking Mel completely to the curb. But with being handicapped by the inflammatory arthritis,  I'm not feeling like I have the margin anymore.  So I'm thinking VATS to remove the stable lung met and WLE to remove the intransit.  This will render me NED (and therefore ineligible for a clinical trial) but should give me more options to address my knees, hips, back and shoulders with steroids or ???

I've never been wild about getting into a knife fight with Mel, but...  What do you think?

Grateful for this community!

Shalom!

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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I'm newly diagnosed Stage 4 Melanoma as of mid January '17. I'm interested to hear how folks have navigated their way through treatment options that are a trade off between toxicity risk and higher outsomes versus less toxicity and good but not as high of an outcome. Other than melanoma, I'm in really good health, the tumors are in my lungs and haven't traveled yet. 

See below for the options. Really appreciate the advice. 

Recommended Approach 1 - Combination treatment
Drug 1 - Yervoy (same as Ipilimumab)

Drug 2 - Opdivo (same as Nivolumba)

% Toxicity (55%)
Mortality           1%
Severe              10% 
Other                 40%

Response Rate
57%

Combination Treatment Abstract - Yervoy and Opdivo

http://investor.bms.com/investors/news-and-events/press-releases/press-r...

Recommended Approach 2 

Drug 1 - Keytruda (Pembrolizumab)

% Toxicity
Mortality           1%
Severe              10% 

Response Rate Alone
40%

Drug 2 - clinical trial (phase 3 with placebo for 50% of group)

Response Rate with trial ~ 50%.

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Anonymous's picture
Anonymous
Replies 0

Found out today that I will be starting trail of Glembatumumab vedotin & Varlilumab on Thursday.  Gald to finally hear the news, but also nervous to say the least.  Paul, have you started your trial yet?  Keeping faith that this one just might be the answer!!

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Aloha14's picture
Replies 3
Last reply 2/7/2017 - 6:10pm
Replies by: Aloha14, Janner

Has anyone had Melanoma start as a blister that has liquid in it? I accidentally broke a blister that I didn't even know I had and all the fluid came out. I'm getting the area on my leg checked next week but just wondering if it could of been the start of another melanoma. 

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brendon's picture
Replies 8
Last reply 2/3/2017 - 5:20pm

Hi there, this is my first post here. I am impressed by the knowledge and support demonstrated on this site. I was recently diagnosed as stage IV following a recurrence of a stage 1 on my leg 10 years ago. Sentinel node biopsy was negative at that time. There is now evidence of metastases in multiple lymph node beds in the groin and abdomen but no evidence on major organs.

I am now in treatment decision mode and going back and forth in my head between starting more conservatively with anti-PD-1 monotherapy (Opdivo) or going more aggressively with the combo (Opdivo/Yervoy). I am interested in hearing about experiences and factors I might consider in this decision.

Thanks,

Brendon


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Anonymous's picture
Replies 2
Last reply 2/3/2017 - 1:33pm
Replies by: Anonymous, Bubbles

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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TamSchubert's picture
Replies 12
Last reply 2/4/2017 - 10:43pm

Hey all,

My husband was recently diagnosed with Stage IIIB, and may now be stage 4.

His primary tumor was on his *left* mid-upper back & only 0.82mm in depth, non-ulcerated. Despite the shallowness, it spread to a sentinel node on the *right* side (2.2mm tumor in node, still fully encapsulated). Two left nodes were tested, and were negative. A full axillary nodal dissection was performed on the right side, and all nodes from that surgery were negative (in total, one positive node (the right sentinel) & 28 negative nodes)

His first PET/CT scan showed two nodules on his *left* lung, 2mm & 9mm. Our oncologist told us they weren't metabolically active & didnt take up the FDG tracer. He booked us for a follow up CT in two months, and said the nodules were too small for a needle biopsy.

He did NOT say that he is stage 4 yet, and seemed relatively nonchalant about those two spots on the left lung. No VATS procedure was offered, just a follow up CT.

We opted out of Interferon in November because he only had one positive lymph node & a relatively shallow primary tumor with no ulceration. We instead chose the "wait & see" route - mainly because the risk/benefit wasn't worth it (I was 5 months pregnant at time of diagnosis, and we wanted him to maintain his quality of life while we prepared for our first little one.)

However, now that these lungs spots have been seen, I don't know if the "wait & see" choice is the best anymore. Our oncologist didnt seemed too worried about them & didn't mention starting interferon or any other therapy yet, but I'm beside myself with worry.

Has anyone else had benign lesions on their first PET/CT like this?

My husband does work around a lot of things that could cause lung issues, and has a history of lung infections including a bad cause of walking pneumonia that resulted in a large peel in his right lung - but it is the left lung showing these nodules. We were told it is fairly likely that these are benign... but we really don't KNOW. I am now 9 months pregnant & beside myself with worry. We contacted MD Anderson & have had his scans and reports sent - we are just waiting to be scheduled in there.

I want to push for a VATS procedure, but it wasn't even mentioned as an option to us at our last visit. I only learned about it after we left & I began researching independently.

Anybody with experience in this department?? I cannot stop worrying about these lung spots.

 

Tam S

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Has anybody had their Melanoma Specialist do the biopsy? I woke up the other day and unintentionally scratched my leg and clear liquid came out. I was surprised and looked at my leg which looked like a collapsed blister. My original melanoma looked like a blister also but I think it was solid. Now the area has a scar which is healing fast. Anyways, I hope this isn't a spread of melanoma or a new one. I don't know what else it could be?? I know I didn't have anything on my leg the day before I found this.

I took a picture of it and drew around it with a pen, since the scabs will probably be healed by Monday. I have an app't Monday with the Melanoma Specialist to check on the seromas and I'm thinking maybe she can do a biopsy then. Otherwise, it's back to the Dermatologist.

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Dreaf01's picture
Replies 1
Last reply 2/2/2017 - 9:33pm
Replies by: Aloha14

Just a quick question. I was dx with stage 1b melanoma mid December on my right outter thigh. I had a wle and SNB done on 12/29.SNB was negative with clear margins. For a few weeks now mu right hip has felt swollen and bruised, but you cant see anything (besides my stretch marks). It almost feels like i ran into the side of a counter or something, but i havent. Any thoughts? Could this have anything to do with healing? Thanks!

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Bmine102793's picture
Replies 4
Last reply 2/3/2017 - 9:44am

Got my fiances mri done today they sent a copy to oncologist and gave us one to take home which means im gonna look at it which means im gonna freak out if i see something off. Im no doctor but any glowing spot on the scan is probably gonna freak me out or im gonna imagine i seee one on it.

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Bradley75's picture
Replies 7
Last reply 2/3/2017 - 9:29pm
Replies by: landlover, Bubbles, tschmith, Anonymous, Hukill

I had my first infusion of the IPI + NIVO combo on January 6th.  Within four days, I developed a pretty severe rash.  A couple of days after developing the rash, my oncologist put me on 150mg of Prednisone per day.  That seems to be pretty common from all the research I have done.  Since then, I have developed a pretty fast heart rate and hot flashes.  Once I reported that to the onc, they started looking at the thyroid.  I turns out my thyroid is cranking on overdrive.  They gave me a pill for the heart rate and say it should self correct in the next few weeks.  I am down to 60mg of Prednisone per day so the end is in sight.

The reason I am posting this is because what my melanoma care team has been telling me the past few weeks.  They have said I will not be receiving my 2nd infusion of the combo.  The plan is to start me on Keytruda once I am off the beta blocker and the Prednisone.  I have to say I am rather depressed by that news.  I have read of many people that have dealt with the same side effects I am dealing with.  I don't remember them saying they had to quit because of a rash and a hyperactive thyroid.  I am trying to stay positive, but it hurts knowing the best treatment plan will no longer be an option for me. 

Does their plan sound correct based on what you all have been through? 

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Rita and Charles's picture
Replies 33
Last reply 2/5/2017 - 9:32pm

My husband Charles died yesterday morning, I was thinking he was having a bit more sleep it is hard to get to doctor's appointments.  I hate this disease, please say a prayer he is in a happier pain free place.

 

Rita

Rita

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_Paul_'s picture
Replies 13
Last reply 2/3/2017 - 6:48pm

Hey folks,

I have been in touch with Josh, and told him people have been asking about him. I am here to provide an authorized update from the man himself.

He has completed the initial 2 days of chemo which involve receiving the harshest of the two drugs - cytoxin. It is making him nauseous but no vomiting (3 cheers for spewlessness).

His early TIL numbers from the lab are looking good (hoping for a 50B yield) and the cells are viable.

His spirits are good and his worst thing is the boredom (boy can I relate to that).

I will post an update on myself a little later after I take care of a bunch stuff that has been accumulating on my desk for the past couple of weeks.

- Paul

To exist is beyond fantastic.

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Shaneswife's picture
Replies 4
Last reply 2/3/2017 - 10:18pm

My poor husband has had set back after setback. His tremors and headaches and cramping just won't go away. He was on a dex taper and they just increased back to 8mg from 1mg and the headache went but not the tremors. Also unable to eat. Gets an immediate feeling of fullness. But liquids go down ok. Onc believes that one of the brain tumors or inflamation surrounding a tumor is causing his brain to incorrectly interpret signals from his stomach. So they keep increasing the steroids. He's been on 16mgs since November except for the taper the past few weeks. Realistically how long can you stay on high dose dex?

PS they stopped his dabrafenib and tramentinib because of all the symptoms and vision changes.

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