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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Nadia's picture
Replies 20
Last reply 2/2/2014 - 10:40pm
My husband, Dave, is Stage IV, dx in August 2013, and, of course, was told he has 8 months to live.  He was accepted in the Phase III, three arm double blinded Nivo+ipi, nivo, ipi, and he had the first IV on November 1st 2013.   The CT scan (Jan. 28) didn't bring us the good news we were hoping for.  Just to keep it short, some tumours decreased, some tumours increased.  No new tumours were seen.  The preliminary report shows close to 20% progression in the tumour load.  The biggest increase was noted on the liver tumour, and on the lungs nodules. Despite this, Dave feels great, energy levels are high, just like before the treatment started.  All his blood tests are normal, including the liver enzymes.  The LDH is 138 and it's been around this value since the beginning.
 
We are still part of the Trial, as Dr. strongly feels there is still a chance Dave can benefit from the trial. He is receiving an IV every two weeks, for the next six weeks, at what point he is getting scanned again.
 
My hopes are:
1. There were almost three weeks in between the base line scan and the start of the trial.  There is a very good chance the tumours grew fast in this time frame and actually, although the numbers don't reflect it, his tumours are stable in size or even a little smaller.
2. He is a slow responder to medication, and maybe the treatment will kick in soon.
 
I kept track of all the side effects he had, and he had a lot.  None of the side effects sent him to the hospital.  The only drug he took  was Reactine, 2/day, to deal with his skin rashes and itchiness. 
 
At some point I was sure he is on the combo arm (nivo plus ipi).  And then I thought he’s on nivo, and then on ipi only.  To tell you the truth...I have no idea.  I would almost prefer he was on nivo only, because that means ipi is still an option.  But if he was on the combo arm or on ipi only, well, pd1 is not available for him as a follow up.  He is BRaf positive (V600E).
 
We are very positive people, we are going to fight this with all it takes.  We are not giving up, we have an amazing life and we have all the reasons in the world to fight our fight.
I don't know how other people deal with the reality of this disease, but I am not listening to motivational tapes, or read positive and uplifting messages from the internet.  All I do in all my spare time is research, reading articles, links, blogs, fb, forums, all melanoma related.
 
 I hope from the bottom of my heart the scan in 6 weeks will show either stable or a decrease in the tumour load.  
But if there is progression, and he was on ipi, what Plan B, Plan C, and Plan D look like?
It seems the options would be:
•  Tafinlar and MEK.  That, of course if this gets approved as standard care for Braf positive patients.
-  TIL, either at NIH, Moffit, or MD Anderson
-  Vemurafenib (Zelboraf)) 
 
Now I need help from everybody involved in any of the above, or they know somebody that knows somebody:  please, let me know 
- Is there any other treatment option that in your opinion would work as well and I missed?
- what worked for you from the options listed above?
- based on what you know from your experience, or somebody else's, in what order would you do the treatments above?
 
Thank you very much for your patience and for your input.   As I said, I hope everything is going to be ok, but I need to know the answers and the options to the what ifs, it's my way of dealing, it's what keeps me going.  I have no prior experience with any kind of illness, I'm just doing what I can to take care of my man.
 
Also, english is my second language, please be kind with my grammar and choice of words.
 

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Please write Dr Oz's show too! .......I'm getting on the SOAPBOX again. Dr OZ: Yesterday (1/30/2014) a guest made a statement about Black spots on ladies privates NOT BEING A PROBLEM unless they are several centimeters in size.. How many hundreds of ladies will die from your show's off-hand diagnosis of what can lead to their DEATHS?
Today (1/31/2014) you are talking about "skin cancer".
So far no mention of MALIGNANT MELANOMA! Is this "just skin cancer?"
"SKIN CANCER" is what people need to watch out for?.
Most of your guests said their family members have just had it removed. - Indication - NO more problem!
.....Melanoma is not just a skin cancer! --Melanoma: Isn't it ONLY skin cancer ? Where is it also found in addition to the skin? ---=(and liver, and kidney, and lung, and bone and brain and anus, and vagina, and vulva and cervical and intestinal, and stomach and esophageal, and tongue and gum and ear and penis an eyeballs, inside nose and sinuses - I'm getting tired of typing- but have not yet covered all the places "JUST MELANOMA skin cancer" can show up!) and KILL from.

................... Please, Dr OZ, please read the following cancer org article...........
http://www.cancer.org/cancer/vulvarcancer/detailedguide/vulvar-cancer-diagnosis

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/2/2014 - 1:22pm
Replies by: kylez, JerryfromFauq, POW

I am at a patient and physician meeting the MRF is hosting and hearing data from some excellent melanoma doctors.  A couple of things have stood out so far:

We have seen data that for patients whose tumor has the BRAF mutation, combinging a BRAF inhibitor plus a MEK inhibitor is better than the BRAF inhibitor alone.  We also know that most patients respond to these drugs for a few months then the tumor finds away to work around these inhibitors.  The question remains whether you should take a BRAF inhibitor first and save the combination for after the BRAF alone stops working.  Data now shows that people who have progressed on BRAF monotherapy do not perform as well on the combination as do people who have not had prior BRAF therapy.  This suggests it is better to start with the combination.

About 50% of melanomas have the BRAF mutation.  Another 20% have an NRAS mutation.  Data now suggests that patients with an NRAS mutation respond better to the immunotherapy drug ipilimumab (Yervoy).  This may be because NRAS patients tend to be older and more tied to long-term UV exposure, and older patients tend to have more mutations in their tumors overall.  This, in turn, may make those tumors easier targets for the immune system once it becomes activiated against tumor cells.

Tim--MRF

 

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heiditemple's picture
Replies 16
Last reply 2/3/2014 - 7:53pm

My name is Heidi and I'm 27 years old.  I was diagnosed with melanoma at the Elmendorf AFB hospital in Anchorage, Alaska in October 2013.  The dermatologist performed a shave biopsy, and assured me that he didn't think anything was wrong.  My husband was in the middle of getting out of the Army the week I was diagnosed, so my dermatologist referred me to the Vanderbilt Cancer Center in Nashville, TN because we were moving to Knoxville, TN.  I had a great surgical oncologist there who performed the WLE and sentinel node biopsy.  Unfortunately, the biopsy found 4 positive lymph nodes of the 8 that he removed.  Two weeks later, I had a radical neck dissection, where no more new positive lymph nodes were found.  Unfortunately, during the radical neck dissection, my doctor severed my spinal accessory nerve and I'm having some difficulties with that. Vanderbilt told me that their clinical trial was closed, so I was referred to the Thompson Cancer Center here in Knoxville, TN.  Thankfully, they accepted me and I was randomized for the high dose Yervoy infusions.  I have my port placement on Monday and then have my first infusion on Thursday.  I've read through a lot of the forum posts on here and I have learned a lot.  Does anyone have any advice for me as I begin?  Thank you so much!

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Socks's picture
Replies 3
Last reply 2/15/2014 - 12:58pm
Replies by: Socks, joy_, jahendry12

I'm new around here and still waiting on the staging of my melanoma, so there's not much help I can offer. The only thing I can do is if anyone is going to M.D. Anderson in Houston, TX for treatment, and especially if you plan to stay in the Rotary House, I can answer questions, offer tips/advice, etc.

My mom has been going to M.D. Anderson (she lives in Indiana) since mid-2012 for her Non-Hodgkin's lymphoma, and I've gone with her on all but two of those trips. She and I stay in Rotary House every time we go, and we lived there for four months while she got a stem cell transplant and did her 100 day recovery from it.

So despite the fact I live in Michigan, I can offer a lot of help with M.D. Anderson if anyone needs it. It's about all I can share at this point. ^_^

"Be who you are and be that well." - Saint Frances de Sales

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Yvonne.D's picture
Replies 4
Last reply 2/4/2014 - 12:40am

I had my WLE results appointment on Wednesday and it was good news. I posted both my path reports below. I finally got a copy of my original shave biopsy as well. Thank you to everyone who answered my questions these past 2 months.

I had my full body check up last week to and they want to do 5 more biopsy's. I talked with my surgeon and she said that instead of my dermatologist doing shaves, she will do them from here on in and do punches. So I will have 3 biopsy's done on March 4th and then the other 2 later. In Ontario, our healthcare will only allow them to do 3 at a time apparently. I will be seeing both a derm and my surgeon for my 3 month check ups.

Ultrasound appointment is Tuesday for the results of my lymph nodes. The guy said they just look like lymph nodes. The surgeon also checked and she said that they just feel reactive. Everyone was right. Thanks! I am healing nicely now and bruising is almost gone. She took the tape off and you can barely tell it is there.

So we are done with this spot and on to the others. Lets hope they are just little dark ugly moles.
----------------------------------------------------------------------------------------

Specimen

A. Skin - LT BUTTOCK LESION

CLINICAL HISTORY

MELANOMA

Gross Description

The specimen is received in formalin in one part.

Part A is labelled with patient identifiers only and consists of an ellipse of skin and subcutaneous tissue measuring 3.5 x 2.2 x 2.3cm, in the center of the surface is a wrinkled slightly concave gray tan oval area measuring approximately 1.3 x 1 cm, coming to within 0.4cm of the closet margin. Marker with silver nitrate, serially sectioned and all submitted in blocks A1-A11. Ic

Final diagnosis

A. Skin left buttock, excision:
-Skin with underlying dermal scar and biopsy site changes
-Negative for Residual in Situ or Invasive Melanoma
-------------------------------------------------------------------------------------------

She got it all in the shave biopsy!
 

I did get a copy of the original biopsy report which I wrote out below. I don't know what any of it really means. Thanks to Janner for helping out before with staging for me.

--------------------------------------------------------------------------------------------

Specimen Submitted: Skin, Left Thigh

Sur-Path Level 4

Micro Examination:

This biopsy is cut in three sections and submitted in TOTO. The epidermis shows elongation of the RETE ridges and there is prominent proliferation of nests and single large epithelioid atypical pigmented melanocytes along the dermal epidermal junction and there is upward migration of single melanocytes noted in focal areas. The cells have large necleus and prominent necleolus and there is invasion of the papillary dermis by some nests of atypical melanocytes with dense infiltrate of melanophages and some lymphocytes. The appearance is compatible with superficial spearding melanoma, Level 2 invasion. The vertical height is 0.47mm with no ulceration. The mitotic index is one mitosis per one MM squared.

Diagnosis: Superficial spreading malignant melanoma, Level 2 invasion. The vertical height is 0.47mm with no ulceration- not excised.

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ElizabethS's picture
Replies 3
Last reply 2/3/2014 - 9:58am
Replies by: kylez, JerryfromFauq, Momrn5

My husband has a rapidly progressing Mucosal Melanoma with a NRAS mutaion. He was diagnosed in August with a local tumor and is already stage IV with mets in multiple organs and unable to work.  He enrolled in the Merck PD1 vs ipi trial and got randomized to ipi, his oncologist did not think ipi a good option as he is progresing so fast there is not enough time to wait and see if he is one of the lucky ones that ipi works for.  Instead we went with a combination (tram and GSK795) to block NRAS (just started on Friday),  we were really lucky to get in tthe trial, but this is an unproven theray since NRAS has been very difficult to target and I need to find a back up if he does not respond, or it the toxicity is too much.  We don't have 6 to 9 months to wait for PD1 to be approved by the FDA and it seems really difficult to find any open PD1 trials. I'd be really grateful for any leads?

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Momrn5's picture
Replies 1
Last reply 2/2/2014 - 7:48pm
Replies by: jahendry12

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/4/2014 - 11:55am
Replies by: Anonymous

Would like to hear from some folks who had only mild side effects from IPI but had good response...?

Thank you All... So appreciate everyone's knowledge, resilience and compassion

Sally

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jahendry12's picture
Replies 2
Last reply 2/2/2014 - 4:20pm
Replies by: Bubbles, jahendry12

If you are a facebooker, here is a way you can support cancer survivors as well as those currently battling cancer.  For every facebook profile picture that is turned 'purple,' Chevy will dontate $1 to the American Cancer Society.  Just follow the link below.  You can not do this from your mobile phone.

 

www.chevrolet.com/purple-roads-cancer-world-day.html

 

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POW's picture
Replies 5
Last reply 2/3/2014 - 8:14am
Replies by: Anonymous, POW, Momrn5, kylez

Momrn5 just posted this link to what she correctly refered to as the "Melanoma Therapy Finder". 

You can access it at  http://therapy.collabrx.com/melanoma or, even better, at Mom's original MedPageToday link. 

Indeed, this online tool can help you find various treatment options for melanoma, the manufacturer and whether or not it is FDA approved. Thanks, Momrn5! Great catch!

But what's even better (and the reason I am posting this again here) is that it is also an interactive clinical trial finder! You can enter your melanoma stage, location of mets and your GENE MUTATIONS and it will present you with a list of possible clinical trials. If you choose BRAF mutation, it will also ask you if you have already taken a BRAF inhibitor and then present you only with clinical trials for those who had BRAF inhibitors. If you are presented with a long list, you can click on the name of the study drug (like MEK162, for example) and it will sort the list to show all the MEK162 trials as a group.

This is exactly what I was suggesting in a post last week suggesting that we lobby for a better clinical trial finder than clinicaltrials.gov.  

 Thank you to Drs. David Fisher and Keith Flaherty and their team for creating this wonderful tool and to Momrn5 for bringing it to our attention. I strongly suggest that MIF add a link to this site on their "Resources" page.  

 

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lll.ll.lll.ll.lll's picture
Replies 3
Last reply 2/3/2014 - 1:39pm

So.. where did I leave off..

Finally got my insurance and got to see some Drs.

My primary got the ball rolling with finding out that I was just at stage 2 and it was just lateral, she got me a cat scan set up and a new appointment with a new dermo.

The new dermo did a full check of my skin and took note to my lymph nodes being so enlarged. So much so she got my CAT scan changed to a PET scan and to see a surgeon after.

I did my PET and went to see the oncologist. We went over the scan and he told me everything looked good but he was concerned about a spot on my lung right under my melanoma. He said he wanted to wait to see what it was like after the melanoma was out. When I asked about my lymph nodes being so enlarged he told me they were normal and that the mind is a very powerful thing LOL that being said I was late for my surgeon three floors down.

My surgeon looked me over and started checking my lymph nodes.. starting under my armpit.. he said it was enlarged (even tho an oncologist said 20 min earlier they were fine) and wanted to do a sentinel node biopsy before surgery to see where it has spread.

Last Wed I had my surgery scheduled and I went for my biopsy first thing and low and behold lymph nodes in my chest lit up. Mind you I've been now told by the original dermo that what I had going on had nothing to do with my melanoma (he wanted to remove it in office tho and my surgery was over two hours and I have an 8" incision on my later) my primary had basicly told me I was a drug seeker cause my PET came back clean and there was no way I could have pain even tho my lymph nodes were so enlarged and an oncologist basicly tell me I was mental smh

If I would have listened to any of the three I would have been butchered in a drs back room while this progressed inside of me.

Since the surgery most if not all my nodes have gone done.. the pelvic pain.. lower chest pain.. groin pain.. all but gone..

I'm FAR less knowledgeable than most in here on this but never let any Dr tell you what you feel or how you should feel..

Thanks for reading

Adam McCurry

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kpcollins31's picture
Replies 8
Last reply 2/4/2014 - 1:45pm

Bowel resection surgery is scheduled for tomorrow morning but I am being admitted today for bowel prep, bloodwork, EKG, and chest x-ray. I have really not been looking forward to this as I still feel really good physically and I know this surgery is going to knock me down a few notches for a while. My hope is they get in there, take it out, and return me to NED status (albeit at stage 4). I am very comfortable with the surgeon (Dr. Stewart) who is also my melanoma specialist at Wake Forest Baptist Health.

Despite a terrible football game last night, I was at least able to enjoy some good food and drink prior to the surgery.

Wish me luck.

Kevin

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kylez's picture
Replies 10
Last reply 2/6/2014 - 2:20am
Replies by: kylez, LuckyMan51, eric w

If you've completed Yervoy/IPI reinduction, were the side effects for you similar to the first time, or stronger the second time around? 

From some posts here it seems like side effects esp. colitis tend to be stronger the second time. My doc mentioned the chances of colitis may be higher the second time around. For me it would be 2.5 years between rounds. Anybody _not_ get colitis on reinduction?

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cornishman32's picture
Replies 5
Last reply 2/6/2014 - 5:47pm
Replies by: KYDonna, bj63, Linda56, joy_, kylez

My daughter Shirley is now suffering the full range of side effects from this drug, and I would like to know whether these will continue throughout thye time she takes it,  What is the liklelihood of the side effects moderating?

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