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
Daisyduke's picture
Replies 6
Last reply 5/21/2016 - 10:22pm
Replies by: hknoll, Anonymous, DZnDef, Daisyduke

Hello All,

 

Well, I have had my 2nd and 3rd opinions and probably going for my 4th.  I have Stage 4 Matastic Melanoma in my Lymph Nodes.  I had the surgery to remove the cancer in two Lymph Nodes and all the rest of my Lymph Nodes removed in my lower groin area.  So as of right now probably no cancer.

 

2 of the Doctors want to do the Wait and rescan in 2 months being that if they start Keytruda or Opdivo there is nothing to to go after and why put my body through the therapy.  There is no way of knowing if it is woiorking if there is no tumor. The other doctor wants me to start the therapy right away because he says it would work on microscopic cancer.

 

I am very confused on which path to take and I am doing a lot of praying, waiting for some kind of guidance to make the right decision.  I am leaning towards the Wait and rescan option . Is there anyone else who is dealing with a similar situation?

I know that once you start the therapy it alters your immune system and there are many risks involved, Crohn's, Colitis, etc. and I could be taken it indefinitely,  I have also heard that it aonly helps about 40% of the people.

 

I know this is a great suport group, and this decision is mine to make it is just so hard to make.   I am exercisng, joining support groups, using positive thinking and have completely changed my diet and taking supplements.  I  am lookinginto meditation and anything else I can do to keep this ugly desease away.

 

Any insight and help wouldbe appreciated.

 

 

Login or register to post replies.

jennunicorn's picture
Replies 10
Last reply 5/21/2016 - 7:58pm

I had my first maintenance infusion of Ipi (10mg/kg) yesterday. Since I took the first 4 main infusions really well with mild side effects I am hoping it stays that way through maintenance doses.

I know not a lot of people have had the maintenance Ipi in the adjuvant setting, but I am wondering if you're out there, how did it go for you, did it feel similar to the main doses, did new/worse side effects pop up? Just curious how it has gone for other Stage 3ers on maintenance Ipi.

Who knows if maintenance in the adjuvant setting is totally neccessary... but if my onc says I should go for it, then why not, I'll give it a whirl. My onc, Dr. Katy Tsai, will be at ASCO in June with a lot of other great melanoma specialists, her abstract is specifically about the efficacy and safety of PD-1 inhibitors with uveal melanoma, which is very rare but glad to see strides are being made toward finding good treatment solutions to those dealing with that rare form of melanoma. This conference should show some really great new research, which I am sure it gets better and more exciting each year. 

Feeling pretty exhausted today, relaxing with my dog Cooper and binge watching comedy specials on Netflix.

Next PET/CT is scheduled for June 7th.. oh joy.

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

Login or register to post replies.

Rlukas79's picture
Replies 1
Last reply 5/21/2016 - 3:52am
Replies by: Anonymous

My dermatologist told me at my annual skin check that there is no certainty that Melanoma in Situ will ever evolve into Invasive Melanoma.  Much like atpical moles not having a biological certainty either.  A lof of dermatologists are now following the Harold Kittler school of thought that invasive melanoma was always a melanoma, from the onset and that melanoma in situ will always be melanoma in situ.

Login or register to post replies.

jpg's picture
Replies 6
Last reply 5/20/2016 - 6:05pm
Replies by: jennunicorn, Shelby - MRF, Anonymous, youngann

It happened to me when I went to the google search and put MPIP.org in.  It says your information is not safe here.  I came in through the website to be safer?

Login or register to post replies.

What does co- existing nevus: present mean? Also wonder if the fact that biopsy report states there is a downward growth of the malignant cells into the dermis is of any significance. My husband seems to deal with this cancer diagnosis as he did with his prostate cancer diagnosis- not really a big deal or concern. Almost an ignore cancer. Thinks it is rediculous to follow up often for skin checks and lymph node checks on self. I feel doctors around here play down cancer diagnosis. I have read John Hopkins recommendations for his stage of prostate cancer and given his age he would not be a candidate for the active surveillance plan he was offered and chose. Anyone else out there with prostate cancer and melanoma? 

Login or register to post replies.

HZol's picture
Replies 10
Last reply 5/20/2016 - 9:00am
Replies by: mary1233, HZol, Anonymous, CHD, Lori Ann, jyc

Hello, My name is Heidi and I'm very new. I had a tumor removed from my vaginal area last month...for 3 months we thought it was a cyst and waited for it to go away, well it more than tripled in size in the month of March so on April 15th, had it surgically removed and biopsied by my gyno. The next week, we got the call...vulvar mucosal melanoma. Since then, its been oncologists and pet scans and brain MRIs. Pet scan...negative. Brain MRI negative. The tumor level was T4b which apparently is deep so they are doing a sentinel node biopsy as its "probable there could be node involvement". June 6th is radical vulvectomy for clear margins and node biopsy to stage me and create treatment regiment..my situation is extremely unique as I just had my right leg amputated last summer (from a role swing accident)...and the cancer is on my right side, therefore node biopsy will be on right... originally my oncologist was concerned how node involvement would affect my limb (lymphedema) and future prosthetic wear so they suggested I wait for biospy...then another oncologist suggested due to depth of tumor, we should biospy. We eventually decided to just do the biopsy during the cancer resecction surgery, as this mucosal stuff can be microscopically present and not be detected by the pet scan. ... What questions should I ask at this point? Our heads are spinning and not straight so I don't want to miss things. Any input would be greatly appreciated.

HZ

Login or register to post replies.

the shadow's picture
Replies 3
Last reply 5/20/2016 - 8:55am
Replies by: Janner, the shadow

First, I'm sorry if this is not an appropriate topic for the Board, since it's not directly related to melanoma.

I had a mole biopsied because it had a scab. The mole came back as a dysplastic nevus with severe atypia. I've had dysplastic nevi in the past (and probably have others), but never one with severe atypia.

The biopsy was reviewed by a dermatopathologist. Is there any point in seeking a second opinion, or should I just be glad it wasn't diagnosed as melanoma and get the WLE?

Thanks!

Login or register to post replies.

LaurieGayle's picture
Replies 12
Last reply 5/20/2016 - 1:05am

This is my first post, although I've read every post I could since my diagnosis in May. The people on this board have really helped me by sharing their experiences, so I felt perhaps mine will help another person who shows up here, looking for information and realy experiences.

I had a "funny spot" removed from my upper back/lower neck just to the right of center in April. It turned out to be melanoma and was deep enough that my dermatologist said I needed the WLE and SNLB done to either get it all out or get it staged. I had the surgeries on Tuesday 5/10 and am waiting for the results. The doctor expects to have them by my appt this Friday 5/20.

I had the shots for the SNLB done fairly early in the morning. I had been dreading that part having read some horror stories about the pain. I had 4 injections, 2 I barely felt and the other 2 burned for a few seconds and that was it. I was so relieved. I was told it's different for everyone, so maybe I'm just lucky!

The surgeries were in the afternoon and I was under general anesthesia. Two hours later I was waking up and was soon sent home with pain pills and instructions on how to care for the area. I only had one lympy node removed and it was in my neck to the left of the WLE.  I look like someone tried to chop my head off and for a day or two I also felt like that. My throat was sore on the inside from the breathing tube and my neck was swollen from the surgery. Six days later, i feel fine except for a stiff neck caused most likely by being told to sleep with several pillows behind me so keep the swelling down.

I share all this only to say that after a tremendous amount of waiting and worrying, it all went very well and really wasn't any huge deal. I only wish they could have taken care of it all those first couple of weeks!! So, if you are new and wondering or worrying about this part of the process, try not to stress too much. If you are stressed, come here and talk about it. I wish I had shared earlier. It just seemed to make it too real at the time. 

As I said earlier, I get my results later this week. We will move on from there! Thanks for being here.

 

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.

JohnA's picture
Replies 1
Last reply 5/19/2016 - 7:47pm
Replies by: Bubbles

Hey folks, 

 

These are being tested in other cancers, but I wonder if they will come to have relevance for the melanoma community?

I thought some of you might be interested-

John

 

In the 61-patient study, about 30 percent of those with Merkel skin cell carcinoma treated with Merck's avelumab saw their tumors shrink or disappear.

Avelumab, which German Merck is developing with Pfizer Inc , belongs to a class of drugs called PD-L1 inhibitors that block a mechanism tumors use to hide from the immune system, allowing it to recognize and attack the cancer. They are closely related to the PD-1 drugs already on the market from Bristol-Myers Squibb (Opdivo) and Merck & Co (Keytruda) seen as major advances against melanoma, lung cancer and other malignancies.

Roche's Tecentriq earlier on Wednesday became the first approved PD-L1 drug, gaining U.S. approval to treat advanced bladder cancer.

Login or register to post replies.

sister of patient's picture
Replies 16
Last reply 5/19/2016 - 5:19pm

Just a quick update on my sister. She had a brain MRI Friday morning and onc called last night confirming what was suspected (I suspected anyway) - brain tumours, big and small but too many to even count, several of the larger ones are bleeding.

I posted last week about her sudden development of severe tinnitus and so aready knew that brain mets are often a likely cause. She sees a radiologist first thing tomorrow morning and we already know that gamma knife is what they're going to try. Treatment will now be interrupted (ipi-nivo) but, again, we knew that would happen too.

What I'm reiterating here is that it's the excellent information I find on this board and the sharing of outcomes that makes me not so afraid of the future for her. Because this board exists and because people selflessly let others know what's happening, we know what we can expect with disease progression, treatments and outcomes. I have alot of hope for her and I will continue to do so!!

Best to all,

Barb 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/19/2016 - 4:47pm
Replies by: JohnA, DZnDef
DZnDef's picture
Replies 15
Last reply 5/19/2016 - 3:06pm

On February 1st, he drove himself to Urgent Care thinking he had a gallstone.  By the end of March he was too weak to stand without assistance.   On May 11th he passed away.   It all happened so fast.  For the past four years my family has worried about my health.  When I was properly diagnosed over two years ago, my mother and two sisters all got their skin checked.  My brother did not.  While in the hospital, they located his primary on his upper left arm.  The same location I had a suspicious mole removed ten years ago, as did my sister and our father.  My brother suspected that our family had an unusual reaction to a vaccine that created the weird mole in the same spot in all of us.  Bizarre possibility with no way to prove or disprove.

Our father passed six years ago, married to our mother for over 50 years.  Now my Mom has lost her son and  looks at me with the dread of losing another child.  She is 81.  I am not afraid of my own death.  But I am afraid of what it would do to her.  I will do my best to not put her through that again.

My brother had hope right up to the end.  He told me that I was a big reason for that.  I'm not sure if that's good or bad.  His doctor told us that my brother's melanoma was very different than my melanoma.  I don't know about that.  I think we just discovered his very late.  Too late.  He may have had it much longer than me.  I am so mad at him for not seeing a doctor sooner.  But nothing can be done about the past.  He is reunited with our Dad now which must make both of them very happy.  I will miss him until I join him myself one day.

Sorry for rambling.  It's a tough time.

I have not caught up on this site in a while.  I hope you are all doing well and defeating this beast.

Maggie - Stage IV (lung mets unknown primary) since July 2012

Login or register to post replies.

Charlie S's picture
Replies 4
Last reply 5/19/2016 - 2:15pm

That is how aldesleukin also known as Interleukin-2 is coming into me one bag at at a time every eight hours.

Nine bags so far I think since starting Monday morning at 7. 

As expected, this one week on after one week off is really giving me a chemical ass whipping.

My eyes are running and boy does it burn.

I am sweating a lot and that burns too.    And all of the juice coming out of me stinks.................I mean REALLY stinks, I smell like a toxic waste dump.

The rigors ( shakes, chills, whatever you want to call them) are worse this time and came on faster.  Thank goodness for the demorol that stops it.

My skin had not finished the first peel before coming back, and it is now.................well it is a mess.

I have a tablet (as in a Big Chief paper Tablet)beside of me and all through the day and I scribble what I would say in a post or just scribble,  then, all through the rest of the day I pluck away in my digital journal on my laptop and after many hours, I paste it and  it becomes this post.

I'm the only melanoma person here in ICU doing IL-2 this time.  Everyone else are renal cell folks.

This is no cup of tea for me, but it seems lke the other five people here getting IL-2 are having a tougher time.

Don't know, but everyone else here except me have people staying with them and at the risk of sounding crass......it seems  to me that the caregivers are causing the ICU nurses more trouble than the patients.

I think this has taken me two days to compose,, edit and spell check. so I'll go ahead and post.

My mind is really starting to turn me into a strange ranger, so dunno if I can go more than 12 or not.

Chemically yours,

 

Charlie S

 

 

 

 

 

 

Login or register to post replies.

Pages