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My mom is scheduled to begin (in 2 weeks) a clinical trial with Ipi (Yervoy)/Nivo (Opdivo) injections... from what i understand, it's pretty toxic and the side effects are quite severe.  Can anyone attest to this?  Are the side effects as severe as it seems?

Also, just wondering if anyone has tried Adoptive T-cell Therapy instead of Ipi/Nivo?  T-cell therapy seems less toxic and more specific to the individual, given that it uses the person's DNA.  Does it take too long to get this type of treatment set up?  (My mom is Stage IV metastatic ocular melanoma in her lungs).

Alternatively, are IL treatments equally as toxic as Ipi/Nivo?  are those treatments as effective?

Thanks,

Shelley

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Hi 

I'm a newbie here. I was diagnosed with subungual melanoma in 2006 and had to have my toe amputated. I have been clear since, but I have this lump in my groin which has been worrying me. I'm going to see my dermatologist next week. The thing is today, the lump feels smaller, does this mean no need to get checked? As i assume the fact it has got smaller, means it's nothing serious?? 

Thanks xx

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Hi guys ,

My brother did MI profile and he needs to receive Zelboraf or Taflinar. Actually my brother lives in Egypt and he does not has insurance so we can not afford the drug's price. Also the drug does not licensed yet in middle east. Do you still have the extra doses and I wonder if you could help me ? I have all medical reports and the result of MI profile that did in Caris life science Lab in USA. I spend last month searching for any financial assistance program for my brother in USA but they only accept U.S resident .  Note:  live in USA.

 

Thank you , I am looking forward to hearing form you soon.

Mai Said

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Hello, I am based in the UK and was diagnosed with choroidal melanoma on monday - a medium to large tumour. I would like to understand other people's experience of brachytherapy - in particular:

1. what "quality" of eye life people now enjoy post brachytherapy. by which i mean not just % vision (i have been told the surgeon thinks they could save 70% of my vision) but the experience of life - how much maintenance does the eye take, do you see stars or colours v differently, what are the issues with a post brachytherapy eye.

 

2. the risk of complications and what complications people have experienced, My family has a history of glaucoma and retinal detachment in any case (not experienced by me to date)

 

I am 51, fit and otherwise very healthy. I do not yet have the results of the PET and MRI scans done earlier this week.

I don't know whether its possible to talk oh the phone to people who have had this treatment. I am getting a second opinion via phone/email with the Shields at Willseye early next week. 

Thank you very much. 

 

Seaspirit

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Vrsomerset's picture
Replies 2
Last reply 2/12/2016 - 10:57pm
Replies by: Vrsomerset, Adam-MRF

I was disgnosised with chorodial melanoma 2 weeks ago and had plaque therapy last week.  My regular eye doctor is excellent and has been keeping a close eye on the nevus for years.  It was removed this past Monday.  I'm being treated at the Wills Eye Hospital in Philadelphia.  I'm very scared that I may lose my eye and of the cancer spreading.  I had the biopsy done but don't have the results yet.  The tumor was small and they say the results of my treatment should be good.  There's not much information out there to read up on and I have no one to talk to about my fears and how they've made out.  Any help and info from other CM folks is appreciated.  Thank you, Vicki

 

Vicki spisso

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Anonymous's picture
Replies 4
Last reply 3/8/2016 - 2:07pm

So my life has been on standstill for the moment due to melanoma. i just found out today that I have melanoma. I have the copy of the report and the specialist said that it is very early, thin, and easily curable. I have the melanoma on my scalp. The report states "pT1a, mitotic rate is 0 per mm sq. and it is 0.30 mm thick." I am effing scared. The survival rate, I was told was very high, but since it is locate on the scalp, my fear is brain cancer. I will see my derm again tomorrow for a full body skin check, and I will see a physician for an annual physical. I will tell the derm many questions, and I will ask the regular physician to draw blood out for any signs of cancer, and I will do like CT Scans, MRI's, just to be safe. The specialist said it has not even spread. But I want to be safe. I am still hella scared out of my mind and obsessing about a blurry future.I am a full time University student, and healthy. Sorry if I am overreacting, but I am scared. Coming from personal stories, is there a chance that this melanoma would come back, and eventually spread? If so, what is the survival rate?

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/30/2016 - 6:34pm
Replies by: TeoFriendly

Does anyone have this or know of someone.

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threeaces97's picture
Replies 2
Last reply 12/1/2015 - 10:44am
Replies by: threeaces97, gregor913

I'm stage 3c, and just recently completed a 4 month clinical trial.  PET scan show 4 new cancer filled lymph nodes.  Met with one surgeon today and another one tomorrow, along with m y oncologist.  Lymph nodes are in a tough location (upper axillary (armpit) and surgery could result in lymphedema and/or nerve damage to my right arm.  DR. is recommending a combination of Yervoy and opdivo IV TX over the next 12 weeks.  Looking for anyone that has gone through this.  Thanks    Mike

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Dear MPIP Community:

We are doing some research into support groups for patients diagnosed with rare subtypes of melanoma - ocular and mucosal. If you have been diagnosed with ocular or mucosal (including acral) melanoma and would like to help us, please fill out the survey HERE. It should take you less than 5 minutes to complete. Thank you in advance for your feedback!

Sincerely,

Shelby - MRF

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Just wanted to say hello to everyone. I have not yet had the results of biopsy but it seems certain that it is melamona. What is so awful is that I went to the doctors about this particular mole a few years ago and she told me that there was nothing to worry about so I did not take a lot of notice of it, but when a friend saw it a few weeks ago she advised me to see a doctor again which I did and this time my own doctor was not there - she was just as useless when I delveoped cancer of the womb -  and the diagnosis of cancer of he womb took up my time instead of concentrating on the mole on my leg I then had to concentrate on another cancer and I suppose what with having PAT TECS I thought if I had any cancer anywhere it would show up but I still did not thing anythihg about the mole on my leg.

 

I had it removed yesterday and so am waiting for the results. The Dermatolgist seemed to think that it was Malegnant Melanoma so I am not holding out much hope of it being anything else and I feel just terror also because I had it such a long time!

 

Just wanted to say hello anyway.

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stemat2's picture
Replies 3
Last reply 3/2/2016 - 1:28am
Replies by: Anonymous, Jessica666, ljohnston

Hi,

I know that my question is probably impossible to answer, I know what's melanoma like, that every single patient reacts differently, so I am rather looking for advice and tips that could be useful for our decision.
Long story short, my father was diagnosed in November last year, when he had two operations. After that, he had no therapy and by the end of January, mets spread to the whole body(it happened really quickly, in two weeks maybe). All that happend, because doctors promised him to enter clinical trial, but delayed the process, apparently on purpose, until mets appeared, so he became uneligible for the trial - which eventualy made us buy Zelboraf on our own, as we live in freaking Serbia, where advanced melanoma is not treated at all, except using chemo, which is ridiculous in my humble opinion.
Now, after 5 months of Zelboraf therapy (which was btw really efficient, he responded better than average), tumor markers are rising again from day to day, and I think we will need a new option very soon. We heard about TIL in Manchester, it's cheaper than in usa and Israel, so we might get money for that, and are considering that option. Second option is to start buying Keytruda, we would be able to collect funds for 6-7-8 months maybe. Tricky part is that, whatever we choose, it would leave us with no money, in deep debts, and without chance for further actions, so this seems like a really hard decision. There is third option, as we could get antiPD1 for frer here if my father goes through Ipilimumab treatment first, but it is really hard to find trials for ipi, and it is way to expensive for us to buy it.

In the end, just to add that we also considered going to Israel, Tel Aviv, to Ella Clinics on Sheba Medical Center (dr. Schachter), because we heard that they are really good in Melanoma treatment, but are unsure of therapy prices there. I know that TIL there is around $200,000 and that is out our league, and cost of one doctors examination is around $5000, which is also a lot. However, I have heard that they are willing to find clinical trials for their patients, and that you can go there every 3-4 weeks and pay just for examinations/consultations, but I don't know if it is true.

If anyone has any advice on what to do or not to to, what to take into consideration, it would mean a lot to us.

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If you are able, please help my father to get a chance to fight melanoma, details can be found on the following link:

http://www.youcaring.com/dragomir-kostic-407622

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Thank you Sarah and your team for an awesome conference.  Full of info, and meaningful connections with other OM friends and family.  God bless your work.

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wendyrlandry's picture
Replies 4
Last reply 12/19/2015 - 1:42pm
Replies by: TomJ6299, Anonymous, PamDeCicco, joelcairo

Hi! I was diagnosed yesterday with Choroidal Melanoma. It was a complete shock! I went to my eye doctor on Tuesday for my routine eye exam. When he dilated my eyes he saw something that "caused hin great concern" on my right retina. He thought I might have a detached retina and scheduled me an appoinment with a retinal specialist yesterday.  the retinal specialist did the dye/photo test as well as an ultrasound. He then looked at me and broke the news. I was devestated!

I now have an appointment with 2 specialists in Memphis, TN on March 17. (I live in Louisiana) I'm super nervous and scared of losing my eye. He did not tell me if it was a small, medium or large tumor. I am having MRI and CT scans done today in preparation for my appointments in Memphis.

I have two small children and the thought of not being able to see their beautiful faces with full vision is depressing. The docotr I saw yesterday seemed hopeful that this will be able to be treated with the plaque radiation and that i would not lose my eye. Fingers crossed he is right.

Can anyone give me some insight from a patient's point of view? What is in store for me?

Thanks!

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