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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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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I didn't get a chance to mention in the post after Dads last Dr. visit, some of her recommendations. First of all the doctor that Dad is primarily seeing is Dr. Freeman, she is not an MD but a DO.  I have done the research and found out that they are basically the same as an MD (Same amount of med school), but they have extra schooling for a "whole body approach" combining western medicine with osteopathic medicine,  including manipulation of the bones etc.  Dr. Freeman doesn't do any type of adjustments (in fact she recommends NO chiropractic "cracking of the bones" for cancer patients), but she certainly has taken the whole body approach, which we absolutely LOVE. We really appreciate that she has literally checked Dad for a lot  of different things (ie: fungus) and we have been able to "rule out" many things.  Overall, Dad is in excellent health (aside of Melanoma).  I think this will definitely be to his advantage in the future.  I asked Dr. Freeman of all of the supplements out there what she thought to be the most important, because there are literally thousands of things you can take and everyone has a recommendation.  The two things she said that were important were: Turmeric & Probiotics.  I found this interesting, I knew the probiotics would be beneficial to help prevent side effects, but have heard a lot about turmeric, but never really did much research.  She said that there have been studies that have shown using Turmeric while on Immunotherapy can help it to work better (I can't remember her exact wording). So of course Dad is now taking it via supplement daily.

I think it is important for all people going through cancer to really find out what else is going on in there body.  These are just my thoughts and by no means do I think there is a right or wrong way to do things.  What works for one doesn't for another.  

Best. Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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jahendry12's picture
Replies 6
Last reply 2/5/2017 - 5:45pm

Hello - I have 2 questions I wanted to pose to the group regarding the TAF/MEK combo.

 

1)  Has anyone NEVER had a fever but still responded?

2)  For those that did have fevers, how long did it take for them to start?

 

Thanks for any input you can provide.  Much appreciated!

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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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Patrisa's picture
Replies 8
Last reply 2/5/2017 - 11:23am
Replies by: Bubbles, Patrisa, Anonymous

Dear friends,

guess it's our time to worry some more...

A year after starting keytruda, my father has had another pet/ct done... His known tumors are COMPLETELY gone, no uptake, but the report says a suspicious change in one of his ribs... No further info on that... My father was in good spirits when he came from the doctor, said everything was ok, the doctor was already familiar with pet/ct results,  he continued with keytruda, so i was shocked when i read the report which came in today...

Does that mean he progressed or can it be other stuff? He hasn't had any trauma to his rib cage, what else (benign) could it be?

Can keytruda work through the 'new' stuff, or will he have to switch to something else?

There seems to be no plan of action to really see what is going on, they plan on waiting for another scan in three months i guess... 

Should we push for something sooner? What would that be? Biopsy? Radiation?

Thank you so much for any info...

Take care everybody...

Love,

Patrisa

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John Bruno 2613's picture
Replies 2
Last reply 2/5/2017 - 10:36am
Replies by: Anonymous

Hello my brother recently had malignant melanoma with a level 1 surgery. He is doing well, but had to get another mole removed this mole came back as a junctional lentiginous nevous, however, it extends to one peripheral edge of the specimen. My question is should he have it re-excised to clear all the margins even though it is benign? What are your guys opinions and experiences. Thanks!  

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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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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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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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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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AshleyS's picture
Replies 15
Last reply 2/3/2017 - 7:04pm
Replies by: Terrified, landlover, AshleyS, Anonymous, BrianP, atsea, Nemesis, Fen, Nanners10

Hey everyone,

It's been awhile since I've posted - there's such a delicate balance between being a "cancer patient " and a "normal person." Admittedly, it's a lot easier to fall into the latter category when you're doing well.

Quick history:

At 29 years old I had a changing mole on my left calf during my first pregnancy in 2012. My OB said not to worry; skin changes are common during pregnancy. About 7/8 months later, I had the mole removed. It was Stage 1b melanoma. I had a wide excision and SNB. Margins were clear and there was no lymph node involvement. I also had a clear PET. Four months later I had another very thin melanoma removed. After getting every doc's "blessing" I became pregnant again. In July 2014, at 20 weeks, I felt a lump the size of a ping pong ball in my left groin. Two days later I had it biopsied and it was metastatic. I had a complete node dissection while I was 23 weeks pregnant at Mayo Clinic. They found 4 total affected nodes. I also had MRIs without contrast, because of my pregnancy. Those were clear. We had ultra sounds every other week to check the placenta (since melanoma is one of only 3 types of cancer that can spread to baby). I refused scans and the treatment (my docs wanted to do some crazy, ineffective drug). I did agree to be induced at 37 weeks and my son came healthy in December 2014. I had scans 5 days later. Mets all over my liver, 1 on my spine, and 4 subcutaneous spots. (I was 31 by this point.) I found out I was BRAF negative. Mayo put me on chemo. I failed it, came on this board, got a ton of advice, and went on the (then trial) Ipi+Nivo combo at MD Anderson in March 2015. Long story short, I received NED status in November 2015. I will finish my Opdivo infusions in about 8 weeks.

So, I have decided to undergo a tubal ligation. My brain knows this is the right choice, but my heart is hurting. My doctor at MDA wholeheartedly believes that my pregnancies played a part in my diagnosis. So I get it. However, I didn't get to enjoy my last pregnancy and I so wish I could have another chance. Again, my brain reminds me how lucky I am to have two children (it took us 3 years to have our first) but I'm still sad. I think some of my sadness stems from the fact that this choice has basically been made for me.

As a side note, I know my husband could have a vasectomy. My doctors don't get it and my family doesn't get it, but I don't want him to do that. I feel like the folks on here know where I'm going..... Melanoma is scary and I know it could return anytime. We're still young and I want him to have options. 

I know things could be so much worse, but this has weighed on me and I feel like my wonderful friends and family can't understand. So, I'm hoping for a little pep talk from y'all!

Ashley 

 

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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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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
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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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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