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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lisamariehenry's picture
Replies 5
Last reply 4/19/2014 - 3:32pm
Replies by: lisamariehenry, Anonymous, patobs01, bj63, Fen

What should I do to prepare for this?  I know I have to take 650 mg Tylenol and 50 mg Benadryl 30 minutes to 1 hour before.  My appointment is for 2:30 p.m.  Should I eat lunch before?  Any info at this point would be greatly appreciated.

thank You!

Lisa Henry

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secondhalf's picture
Replies 2
Last reply 4/19/2014 - 2:21pm
Replies by: secondhalf, SoCalDave

We are  in the early stages of planning Round 2 with Metastatic Melanoma Stage 3.  One option for treating the is isolated limb perfusion chemotherapy at Georgetown.  We turn to those of you that have blazed this trail - what are you thoughts on this treatment?  

We are still waiting to see if this tumor is BRAF negative like the first one that was found in the axilla.  The 'new' tumor is in that same side and it grew quickly.

We also have our Johns. Hopkins visit scheduled.

Thanks in advance!

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Replies by: POW, Beccy2907

My mother is currently going through one of the toughest situations of her life. As her daughter, I truly don't know how to vent or show how scared I am about her diagnosis today. Today after 4 weeks of visiting specialists and getting referred from hospital to hospital, it has come to the conclusion she has Choroidal Melanoma. It all started about a month ago when she started to complain of flashes of light, black spots and floating objects from her right eye. She said she had immense pressure on her right side of her head and her headaches and migraines were getting worse. Ever since I was a child, my mom has suffered from migraines, but doctors never said anything about them. When she went into her primary 4 weeks ago about her vision and headaches, her primary measured her intraocular pressure and said it was high. He referred her to a basic ophthalmologist , (which took her insurance 2 weeks to approve) and he was the one who determined there was retinal detachment and a "mass" pushing on the retina. Once again she was referred, to another specialist, now this doctor I completely have the highest respect for, he was thorough, he has been wonderful and supportive, he was the one who did the B-scan, ultrasound, determining the tumor was inside the eye, thus ocular tumor, when I saw the ultrasound, my heart started to race, the tumor not only takes over half of her eye, but about 3/4 of her eye. As I write this I find myself tearing up, I am truly scared, I just found out about this today. I dont live with my mom, and my moms English is very limited, I feel like she is just so unaware of what is truly going on, and I dont want to show how much anxiety and how scared I truly I am for her. This doctor does not specialize in intraocular tumors, so we have now been referred to another specialist, but now we must wait until insurance approves, and it is a waiting game. They still need to do an MRI and blood work they said to see if she doesnt have tumors in other places or if it has spread. I am really scared, my mom is my best friend and this is just not easy for me to take in.

Elizabeth G.

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hannahcopeland1's picture
Replies 8
Last reply 4/19/2014 - 10:21am

Hello to anyone that is interested,

I am Starting a PD-1 trial on April 28th at Sarah Cannon in Nashville. It will be a much longer commute than I'm used to bc I am from Atlanta and have been basically able to walk to Emory to see my doctors for the past 2.5 years. A bit nervous about the stress that comes along with that . But eager to start the trial. I've got a pretty debilitating cough from the 2 tumors in my lung. I'm just hoping this version of PD-1 called AMP-514 works as well as Merck's. They have been doing the study at lower doses so far and I will be joining for the highest dose of the study, so I guess that's a good thing.

The only treatments I've done so far have been braf (first zel and then the mek/braf combo) until it stopped working last month. So This will be my first dive into immunotherapy treatment. And I'm nervous! I want it to work so badly! I'm getting married in August!

I guess I don't know what I'm posting about in terms of questions, other than if anyone has experienced this AMP-514. Maybe some encouraging words or advice for this 27 year old new commuting immunotherapy patient. I know many of you have a lot of experience and are very seasoned at dealing with these things. I'm trying to decide if I should try to hang onto my job throughout this trial etc

oh also, does anyone have advice for what to take along with codeine cough syrup so I can sleep? It does wonders for my cough, but keeps me up all night.

 

thanks for reading.

Hannah Copeland

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Kate_perth's picture
Replies 15
Last reply 4/19/2014 - 4:22am
Replies by: Kate_perth, Lisa - Aust, washoegal, Anonymous, laura b

Just wanted to share this:-

When I was first diagnosed in 2012, I tested braf negative. It seems to be generally acknowledged that if you are braf negative, you always will be so you're not usually tested again. However, in 2013 I had a small metastases to my left breast and went to a breast specialist at a different hospital for surgery. As this was my first tumour with her (and very luckily for me), she tested me again for braf and the test came back braf positive. I am now responding very well to the braf/mek combo!

After speaking to a few research nurses, they have said that this seems to have happened to a number of their patients, though no one seems to know whether the tests are a little unreliable or the melanoma can mutate into braf positive with time.

My advice is ask to be tested regularly for braf... I can't even believe how lucky I was... If it wasn't for that small bit of luck, I would very likely not be alive - and now I have my best prognosis since diagnosis!

Take control, look after yourself and never ever give up hope!

Kate_perth

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tcell's picture
Replies 9
Last reply 4/18/2014 - 6:02pm
Replies by: BrianP, tcell, Mat, pigs_sty
Anonymous's picture
Anonymous
Replies 0

For east coast there's now some listing.  On MIF's melanomaforum.org

 

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5374brian's picture
Replies 7
Last reply 4/18/2014 - 7:59am

It has been several months since i was last looking over the boards and posting comments. We were scheduled to start a PD1 trial July 11 but that had to be canceled due to Keri getting DVT in left leg at 1 am that morning. Since then she has had surgery for the DVT against several doctors suggestions, After the surgery she did have a rough time and we went into hospoice care. Hospice worked with us on pain management for a few weeks and we thought she was climbing back up the hill. A few weeks later she was having sever pain attacks in the abdomen area. We went back into hospice for 10 days and on the 8th day she woke up feeling fine with no pain and a appetite. We have been back home since working on eating little meals each day and keeping pain under control. Her pain now is controled by a PCA pump. Today was a big day for us. Keri came out of Hospice care for a 3 rd time since her diagnosed Stage 4 in Dec 2012 and will be returning to Moffitt Sept 26 to get scans, tests, and a plan of treatment. She has been a miracle to all of us. She said 1 week again if i am going i want to go fighting. She is not 100% but she has been through 3 surgeries and told she wouldnt make it several times. I say all this to everyone so you can know not to every give up. She has been determined since the beginning to fight and now we are back again. I feel so blessed to have her in my life and cant wait for the doctors plans on Thursday. 

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Marianne quinn's picture
Replies 5
Last reply 4/17/2014 - 11:18pm

My husband was in the 10 mg. Ipi arm of the ipe vs. interferon trial. He did very well with the induction phase- being careful with his diet and a rash that is pretty easily controlled with Benadryl and lotion. He was 3C.

2 weeks after the induction phase, a CAT scan was done, then a PET.. It showed a 2 cm. nodule in the liver by his diaphgram.  We were devastated. A biopsy was done ( with difficulty) and it was positive.

Stereostatic radiation or ablation was offered. A very confusing story, but  another CAT scan for placement for stereosstatic radiation was done  2 weeks  later. and all the radiologist said was "very small, a blush. We elected to go with ablation for a variety of reasons. We are wanting another CAT scan before surgery as the radiation oncologist could not give us a dimension on the lesion. I don't know why as the lesion on the CAT scan and the biopsy done with CAT scan was very easily seen. This is upsetting.

My question is - has this happened to anyone? The oncologist says the ipi is obviously not working due to him being NED prior to entering the study .( December 31, 2013) I am not sure that is correct. We are seeomg  a general oncologist who we like very much but who admits she has little experience with ipi. I know that ipi can have a delayed reaction and can make a scan look horrible at first. The main concern seems ti be that he was NED prior to the study. He has been removed from the study.

If this lesion has disappeared, he wants to get back in the study. Is that possible?

Has anyone out there had good results with ablation?

Has anyone gone from NED to Stage 4 while on ipi? What happened to you?

I was so worried about the 10 mg ipi side effects etc. It never crossed my mind that a lesion would show up right after he reached therapeutic levels . This sucks.

Any info will be greatly appreciated. We will probably ask for a consult with a melanoma specialist after the surgery. We would have asked for one earlier, but things were going so well there did not seem to be a need.

Thanks.

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jswce77's picture
Replies 8
Last reply 4/17/2014 - 8:45pm
Replies by: jazzygal, tickyloo, Janner, dellriol, jswce77, Anonymous

My husband was recently diagnosed with an amelanotic T1b melanoma on his face. He is having it excised as well as a SLNB this week. Our doctor is hesitant to perform any scans. From what I've read, melanoma is unpredictable. We have young children and I want to error on the side of caution. Should I push for a scan of some sort? Is it typical for a T1b patient to get a scan or chest x-ray? Any advice would be greatly appreciated. Thank you. 

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MixtaJones's picture
Replies 11
Last reply 4/17/2014 - 5:15pm

Hello,

I am new to the world of melanoma and was only diagnosed with Melanoma 2 weeks ago. I just found out today I am most likely stage 4. I just met with a oncolgist today and will meet with radiation oncolgist tomorrow. Although I have full intention of giving this cancer hell and not giving in to it I am freaking out a bit. I feel the more research I do the less I feel I have a chance to survive. I had a ALND done and 24 nodes removed but they could not get them all. Everything I read says the drugs help people survive 10 months longer. That concerns me a ton.

I am hoping I can find some hope and guidence on this forum. I have tried reading some post but I have no clue what the lingo is. I feel like I am learning to text all over. what do "met" and "NED" mean? Are there any other terms I need to know?

Hope you all are winning your battles!

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Replies by: Anonymous, Gene_S, Kim K

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/17/2014 - 12:52pm
Replies by: Anonymous

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The Independent ,

CHARLIE COOPER HEALTH REPORTER,

17 April 2014,
737 words,
English,
IND,
1,11,
© 2014. Independent Print Ltd. All Rights Reserved.

News | * Trials of revolutionary personalised drug treatments to begin this summer * Genetics-based approach will 'rewrite the rulebook', says head of Cancer Research UK ‘These treatment trials will rewrite the rulebook’

A "revolutionary" drugs super-trial aimed at discovering personalised treatments for the UK's biggest cancer killer is to get under way this summer, opening what experts have called a "new era" in the fight against the disease. Scientists will exploit a new understanding of the genetic properties of cancer tumours to help them identify drugs to be "targeted" at patients with specific variants of lung cancer, in an unprecedented partnership between researchers, the NHS and the pharmaceutical industry.

Scientists at Cancer Research UK, who have spearheaded the "genetic revolution" in cancer treatment, will be given access to the drugs libraries of the pharmaceutical giants AstraZeneca and Pfizer from July this year.

The trials, which will seek new treatments for patients at advanced stages of incurable lung cancer, are among the first of their kind in the world. Initially, they will test the effectiveness of 14 drugs against 21 genetic abnormalities identified in the tumours of several hundred people.

However, it is hoped that drugs which work against the different genetic varieties of every type of cancer may one day be discovered in this way. Professor Peter Johnson, chief clinician at Cancer Research UK, said the trials marked the beginning of "a very exciting time" in the fight against cancer. "We've been talking for a long while now about how the genetic revolution was going to impact cancer care and we’re really starting to bring these things together now.”

Over the past decade, new technologies have allowed scientists for the first time to perform detailed genetic analyses of cancer tumours, revealing the molecular changes that take place when healthy cells turn into cancer cells.

Scientists have identified a wide range of abnormalities, and cancers previously thought of as one condition have now been revealed to have particular genetic variants in different patients – opening up the potential for more targeted drug treatments, known as stratified medicines.

In the trials, small groups of patients will be identified who are likely to benefit from a certain drug. Up to 12 molecules developed by AstraZeneca will be included and two from Pfizer, but it is hoped that other pharmaceutical companies will open up their drugs libraries to cancer trials in the coming years.

Dr Harpal Kumar, Cancer Research UK’s chief executive, said the trials would “re-write the rulebook”.

“We’re talking about giving a number of options to patients who otherwise would have exhausted their treatment options,” he said. “[This] shifts the emphasis of designing a trial around a single drug to designing a trial that selects from a range of drugs, for a specific patient.”

Lung cancer is the biggest cancer killer in the UK for men and the second-biggest for women. There are 42,000 diagnoses and 35,000 deaths from the disease every year. Globally it kills 1.6 million people a year and while rates are declining in men, women have become more susceptible because of changes in patterns of smoking. Dr Kumar said survival rates for the disease had remained low, making it a good candidate for these first clinical applications of scientists’ new genetic understanding of cancer.

Menelas Pangalos, executive vice-president of innovative medicines and early development at AstraZeneca, said it was “not beyond the realms of possibility” that targeted cancer drugs could, within a decade, dramatically lengthen survival times for patients with certain types of tumour.

“One of the challenges we have is how to get these targeted molecules to the right patients in a cost-effective and time-effective way … [Over the next decade] we could start to offer patients a sequence of therapies that could prolong their life and make this more of a chronic illness, rather than an illness that is fatal within months,” he said.

Professor Johnson said analysing the “molecular landscape” of cancer patients’ tumours from the moment of diagnosis could become the norm, allowing doctors to prescribe treatments aimed at the specific genetic characteristics of their cancers.

Patients from 18 Cancer Research UK centres, attached to NHS hospitals, will take part in the initial trial, which has been hailed as “ground-breaking by the Health Secretary, Jeremy Hunt.

Independent Print Ltd.

 

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Ased's picture
Replies 7
Last reply 4/16/2014 - 8:51pm

Hello to all. My wife has been diagnosed with melanoma stage 4. Mass in esophagus and small spots in both lungs. She started on zelboraf last Monday. We are in Canada, so ipi is only available as second line treatment.  First few days she felt great, but yesterday she started to develop red painfull lumps on her legs and a few on her arms. I read the side effects and it is listed as a possible side effect, but it did say to contact physician immediately if it was present. It's Sunday so we can't call the oncologist until tomorrow about them. She is having a really hard time today as they are extremely painfull.

Has anyone else on zelboraf experienced this, and if so did the symptoms last or go away?

Thanks,

 

Ased

 

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