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.

Expand/ Collapse Topic
 
Replies By
View Topic
Charlie S's picture
Replies 17
Last reply 5/15/2016 - 8:57pm

Whew.  I really had a great time when Janis Joplin and Joe Walsh came into my room in ICU and we had a super jam session.

The nurses are so kind " Well, Charlie if you saw them and played with them, they MUST have been here and just slipped out before anybody else saw them?"

Yeah, rightio; just be sure and leave some meat on a plate in the corner for when Bigfoot drops by later.

14 is enuf right now, so now comes the lasik push and probably an interesting  mind warp.

Let's see here 14 bags @7 grand a copy is..................ah!  98 grand.

At those prices I REALLY need to get a good buzz.

Wowee, some major muffler burn going on here though.

I'm pretty sure I will lose my mind tonight because the wallpaper here looks like the inside of an infected colon and I have no prior visual of that so probably no more posts until I dry out.

Cheers,

Charlie 

 

Login or register to post replies.

I really like the blogs and columns:  www.melanomainternational.org

 

Login or register to post replies.

dfeng's picture
Replies 8
Last reply 5/6/2016 - 1:51am

1 month scan result shows tumor igored the treatment again.

NYP columbia university suggested hospice as the first option.

Will move back to MSKCC to check out another trail. It seems to shall be my last treatment and I guess everyone has lost hope.

About my situation. Painkiller becomes daily medicine. Fluid is annoying but now I am having a catheter so I can drain it everyday.

I totally lost about 70 lbs from my strongest days, and it is still geting less and less. I am still trying to work, two half days a week, but most of time I have to sit in my chair and only can provide my brain.

I can still take care of my daily activies. Just very slow. But it is not safe for me to drive anymore. A disabled sticker now is on my car. Wife drives me everyday.

My parents are trying their best to cook the best food, so that I can eat a little more. I do not know without their support, how long I can hold.

Well, I am still enjoying my life ;) Now I am sipping from my flask, the scotch taste wonderful. Just a little bit, very little bit :D. Missing the days that I was alone in the woods, with my shotgun and snow.

 

D. Feng

 

Login or register to post replies.

Scooby123's picture
Replies 8
Last reply 5/5/2016 - 11:16pm

Hi all,

Been for my follow up after having SRS for brain tumour, all went well but will not know how well the treatment has worked till I have a MRI which my onc said leave it 10 weeks to give time to work.

my tumour on liver, lungs was stable on last scans so no treatment going to be given watch wait have all scans together in 10 weeks. Long wait but just going to rest and enjoy myself.

Asked some questions regarding treatments available I am not braf gene. He said PD1 Keydruda or re doing ippi, plus a trial of combo coming not sure when but I said would I be able to go on that due to been treated with ippi he was not saying yes or no for that one.  Plus he said things are changing all the time. Did feel a little better after but don't like watch wait after brain tumour but cus there was only one when re scanning and it's been treated feels due to stable eles where then no need for treatment at this point

off on holiday next week Spain with my daughter and sister so looking forward to rest.

take care all speak soon

scooby123❤️

Login or register to post replies.

Charlie S's picture
Replies 9
Last reply 5/5/2016 - 3:21pm

...of IL2 into me right now.  It is really starting to kick my ass. My eyes are bleeding toxins and feel as if I had used napalm for eyedrops..

My rear end is slowly weeping .........................just leave it at that.

All of my body seems to be sweating; but not like from heat, but rather like something inside of me is pissed off and is trying to tell me all is not well.

And THEN, I get all of these shakes as if somebody dropped two tons of ice on me

I know there is going to come a poiint and soon that my my chart will say " patient is confused", and IL2 will be sopped.

I really think I have one more in me though.

However what little witts of me says good night Irene until Friday.

I never did date Irene, but I'm thinking ...............................well I just do not know.

Wi-F- is in ICU (where I am, but no cell service)

What can I say?   This is my melanoma.

Maybe I should not report all of this, but you know what?

Nah, never mind.

Cheers,

Charlie S

 

 

Login or register to post replies.

warreri's picture
Replies 19
Last reply 5/6/2016 - 3:51pm

I have a 7mm recurrent nodular melanoma on my ankle/heel area. It's about the size of a golfball. Luckily my PET scan and MRI came back pretty good and it showed that there wasn't any hypermetabolism in places other than the tumor which is a good sign that it hasn't spread. I relaxed a little about it since being informed of it. 

Yesterday I went to a different clinic than the one I had been using previously because they have better technology for the surgery it was determined that I would need. When I went there they made it into something more serious than I thought they would since my PET and MRI was good. I was told to consider below the knee amputation over the complicated skin flap surgery that has potential for functional complications as well. The idea of below the knee amputation makes my stomach turn but it seems to make some logical sense. I was told it would be less expensive and involve less of a recovery time. It seems ridiculous to me that I would have to do something as extreme for melanoma that's likely just stage 2. I guess it's just a concern about clearing margins and the complications involved in doing so on an ankle. I have an appointment with an orthopedic oncologist to discuss that. Any thoughts? 

The surgical oncologist I saw said that she wants me to do immunotherapy and get additional scans (though the scans are something she wanted just somewhere down the road). This confuses me because she hasn't even done a sentinel node biopsy to see if there's any lymph node involvement (which I'm assuming is unlikely since my pet scan didn't suggest that). I thought that was only something that drs considered if there was evidences of spread to lymph nodes or other places. Is it a concern about micro metastasis? Is this only because it is reccurent? Why would they try to do something that the situation doesn't seem to call for? The surgical onc is sending my specimen to a different lab since it hasn't undergone any genetic testing. They wanted to know whether it had the BRAF mutation. 

What do you think? Does this even seem appropriate? I feel like I should second guess some of the judgements made. I feel like they're maybe being overly vigilant?

Login or register to post replies.

gregor913's picture
Replies 4
Last reply 5/6/2016 - 11:15am

Hello, I finished ippi in april. After treatment I have a rash on each foot and small blotches on my legs still. None of them hurt or itch. I feel good . Was just wondering if this is something that is troubling? Cheers greg

Login or register to post replies.

JoshF's picture
Replies 13
Last reply 5/5/2016 - 8:22pm

I had my PET Scan today and wasn't good news. There was an 8cm x 6cm mass around the intestines that lit up. Also something lit up by chest wall but didn't show a mass. It's been 6 months since my last scan and since I started PD-1. Unfortunately looks like I'm not a responder....disappointing.

Next steps are CT Scan on Friday to get a "better read" on this. Seems like that tumor grew fast which scares me that this crap is getting more aggressive. My onc didn;t want to discuss in detail next steps until Friday but said we have options. I've been fortunate in so many ways and on the other hand I can't seem to catch a break. I'm tired and scared. I pray for all of us daily and fight to remain hopeful.

Josh

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

Login or register to post replies.

wasserd's picture
Replies 7
Last reply 5/6/2016 - 8:58am
Replies by: wasserd, JuTMSY4, Anonymous

Hi! I'm checking in to see whether any other forum members are going to participate in the Answer to Cancer bike ride to raise money for cancer immunotherapy research (a2c.org)? My husband and I are signed up for the 25 mile ride. I'd love to know if any other melanoma patients are participating - the course is pretty grueling so that leads me to believe they didn't really have current patients in mind when they planned it. I am doing well right now on Tafinlar/Mekinist, though, so it's a good time for me to train.

Deborah

Login or register to post replies.

MoiraM's picture
Replies 8
Last reply 5/5/2016 - 5:13pm

I went for my quarterly scan result and consultation today. The CT scans show no change, which is good news. The shurnk tumours have stayed shrunk. The 'mass' on my abdomen wall that did not light up in the PET scan and is therefore considered not melanoma is still the same size it has been since my first CT scan in February 2015.

I have been moved from 3 monthly checks to 4 monthly checks. Hurrah.

My oncologist mentioned the studies about gut flora increasing the effectiveness of Ipi that were in the news in November 2015 and discussed on this board at that time and in February of this year. She asked me if I had been taking a probiotic during Ipi treatment April/May/June 2015 (which I wasn't).

She also said that they were probably going to start having a clinic for people like me, who have parts of their endocrine system that have packed up because of immunotherapy to treat cancer. 

{I am in the UK and my treatment is funded by the NHS. I am stage 3C, too phobic of doctors/hosiptals to have a partial or complete lymph node dissection and treated by Ipi UK style [four treatments, 3mg/kg]. I was a responder but my anterior pituitary gland packed up [no signals going to thyroid = no thyroxine, no signals going to adrenal cortex = no cortisol, shutdown of my reproductive systems [which were well on the way out as I am 56]. Also my gut has never really returned to normal but who knows why.}

Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

Login or register to post replies.

ecc26's picture
Replies 11
Last reply 5/6/2016 - 10:13am

Been a long time (again) since I've been able to spend any time on this board. I've been OK, for the most part, but the PD-1 I had been doing so well on for so long started showing signs of failure last fall. I had to have 2 masses in my chest radiated in October, then the brain mets started returning- 15 in December, another 11 in January. Both rounds were treated with gamma knife. Not being particularly excited about FDA approved possibilities, I started looking for trials. 

I came across this one: https://clinicaltrials.gov/ct2/show/NCT02308020?term=melanoma&recr=Open&... for the drug Abemaciclib- which is a CDK4/6 inhibitor. It's an oral medication and after the phase I trials recieved breakthrough statsus. It's being tested on certain types of breast cancer, melanoma, and non-small cell lung cancer patients, and this study in particular is seeking out those of us with brain mets as phase I showed that it had good penetration to the brain. 

The clinicaltrials.gov site listed above should tell you where it's being offered, if you're interested. A few things to be aware of though- 1) you have to have at least 1 brain met that's over 1 cm, 2) just because this site says if offered at a particular location, doesn't mean they're offering it to melanoma patietnts, so be sure to ask. 

The latter I found out when I set up an appointment at Dana Farber in Boston. I brought the first page of the clinicaltrials.gov with me, just to be prepared. It never occured to me that it wouldn't be open to melanoma patients. As we sat in the room listening to the doctor tell us about what might be the next steps, I realized she hadn't/wasn't mentioning the trial, so I stopped her and asked. She had no idea what I was taling about, so I handed her my printout, which she took a quick look at, then turned around to search her computer. She took a few min, then turned around again and said: "It's not listed under melanoma for us, but it should be". She sent us to the cafeteria while she went to try and figure out why it wasn't listed and why she didn't know about it. 

Turns out that it was only being offered for breast cancer patients, but she felt strongly enough that it would be a good trial for melanoma patients that she requested to have herself added to the protocol, at least for me. That took a couple of weeks, which was ok, because I needed time form my brain mets to get to the required size. Last week I signed the consent form, tomorrow we'll be doing pre-screening, and if all goes well, I'll start treatment on Friday. 

I'm both excited and nervous. I'm really hopeful that it works, but a bit nervous about where I'll end up if it doesn't. Concerned that I might have made a mistake that might be too late to fix if this doesn't work. They'll be scanning every 21 days, so they should know pretty quickly if it's working or not- especially in the brain, but still...

Anyway, mostly just wanted to let you know, if you didn't already, that there is a trial out there that actually wants you to have brain mets, and it never hurts to ask/be prepared, because sometimes it just takes a peice of paper to spark an interest/get things going.

Best of luck to you all as you continue your battle

-Eva

Login or register to post replies.

Sflynn's picture
Replies 12
Last reply 8/2/2016 - 5:28am

Hello everyone 

My husband was diagnosed in August 2015 stage IV melanoma with lung and brain mets, BRAF positive and can't find orgin. 

He received 1 Opdivo treatment which had to be terminated due to a severe reaction. It took approximately 6-8 weeks to clear it up with high doses of steroids. In this time he also received 10 WBRT and 2 SRS treatments. 

In November he started the Taflinar Mekinist combo. This made him severely lethargic, loss of appetite and dehydrated. He made it 4 weeks on the treatment before ending up admitted to the hospital on Christmas Eve with saddle pulmonary embolisms and DVTs. After multiple scans it showed that there was more brain mets, edema and hemorrhaging on his brain. They discontinued treatment and sent us home 6 days later on hospice care.

Which brings me to today.. He decided to try this treatment again and sign himself out of hospice. The latest pet scan, MRI and catscan showed significant progression and new signs of the metastic disease in both lungs (2 lesions one fairly large) and brain (15 mets-3 large that are hemorrhaging). Also in his right femoral chain. Hemorrhaging of lesions, swelling, Short term memory loss, seizures, loss of mobility are just some of the new symptoms. 

I support his decision to try this treatment again but  I can't help to think is it the right treatment?? I guess I just looking for some positive results or the honest truth from others that are in the same stage. 

 

Login or register to post replies.

mikeygib's picture
Replies 8
Last reply 5/3/2016 - 11:39pm

Hi,

I have a mole that I have been keeping an eye on for a while and I have a doctor's appointment booked in a couple of weeks time. However, can anyone shed some light on the image below? Thoughts on whether it's a melanoma or not? I am going crazy waiting and can't wait for the doctor's appointment !

 

Login or register to post replies.

nlac26's picture
Replies 10
Last reply 5/19/2016 - 9:39pm

Hey everybody! April 14th ended my first cycle of the clinical trial I'm participating in. What a blessing to say I finished without any problems or major side effects. My study involves Nivo infusions every 2 weeks and I take two pills a day of what the Trial coordinators are now offically calling "epacadostat" instead of some big long number. It's always an interesting trip to the hospital every couple weeks because you never know what new thing the trial people have come up with that has to be included. One trip it could be, we now need 2 EKG's, one before infusion and after...or a stair walking stress test or more blood. I never know, I just roll with the punches and am very fortunate to have a wonderful, humourous trial coordinator I work with every single time. Sometimes we get to joking and laughing so loud I'm sure they can hear us all the way down into the waiting room. Hey, if I've got to be there, it's nice to have someone that can make me laugh and who's standing in my corner fighting for my well being too. 

I had my first follow up CT on April 25th which is standard for the end of each cycle. We had held out for great news and some what recieved what we prayed for...but as we all know, melanoma is a tricky bitch and can surprise you on a dime. My original tumor in my left axillary lymph nodes measured 25 x 23 mm on 02/19/2016. After one full cycle of treatment, it has shrunk to 24 x 19 mm. I mean, that's not the best but at least it's not growing! And that's only 4 infusions so far. The weird part about the scan was the NEW tumor that popped up right next to it, side by side, measuring 25 x 18 mm. Talk about a jaw dropping moment when the doc first pulled up the scans. But what I was told and what my scan read out as,  it is indicative of necrosis and more than likely dead. What?! So, in a matter of 8 weeks, I had another large tumor grow and then just die? Has anybody else had this before? It's hard to know what to feel exactly. Sucks there's a new spot but if it's dead then should I throw a fit or just move on? The doc did say there is no certain way to tell if it's completely necrotic without removing it and we're not opting for surgury right now. We decided to stick with the plan and trial and keep pushing forward. Last Thursday the 28th i had my first infusion of cycle 2. I'm fortunate the drugs don't bother me too bad. I'm like a sleepy zombie when I walk out infusion days and I nap pretty good for a couple days, then it's back to work and life like normal. My husband and I actually ran a 5k Saturday morning and it felt awesome to be out moving in the fresh air.  Here's to keepin' on and reaching forward! God bless all of you out there and best wishes! Niki

Login or register to post replies.

Pages