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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Erinmay22's picture
Replies 7
Last reply 12/8/2014 - 10:46am
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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yazziemac's picture
Replies 2
Last reply 12/9/2014 - 10:57am
Replies by: yazziemac, AnitaLoree

Hi all

This is from Princess Margaret Hospital in Toronto where my husband, Pete, is getting treated for his Stage 4 Melanoma by Dr. Hogg.  I found it easy to understand and I learned a lot about how immunotherapy works.  It will be basic information for the more seasoned of you, but I thought I'd pass it along.

Yasmin 

 

http://www.campbellfamilyinstitute.ca/CFI/media/Documents/PMCFImmuneTher...

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arthurjedi007's picture
Replies 2
Last reply 12/8/2014 - 7:49pm

I was wondering if anyone has heard from Shane? He did the TIL harvest and they had his cells ready but he was in too much groin pain so he was getting it radiated then was going to continue with TIL. That's the last I heard.

Artie

 

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Linda56's picture
Replies 3
Last reply 12/7/2014 - 11:20am
Replies by: Linda56, rick1981

Hello everyone,

 
Thought I should post another update which will give hope to other fellow sufferers.
 
In March 2014  changed from Zelboraf to Tafinlar which shows lesser side effects for sun sensitivity and skin problems.  Tafinlar contains the same substance as Zelboraf, namely vemurafenib.
I had some troublesome months since April 2014 when small lesions started to appear on the scan.
There was among others a possible bone metastasis on the sacrum wing and the doctors were already planning some radiotherapy sessions, but since it didn't hurt anymore, they decided that it was not appropriate to start the irradiation.  They decided to wait until the next scan and the lesion showed unchanged after two months.  
In the meantime, I had an accident and I broke my hip.  This happened in August and during surgery they placed a hip prothesis.  My scan of September showed also various lesions, but the doctors said that this was due to the accident.
And then in October 2014, I passed another petscan which shows NED again.
This is just to say that when the scan shows sometimes worrying lesions, that these can dissappear again after a few months.  During all this time I didn't stop my medication and I feel very good for the moment.  I have very little side effects now and I'm fully recovered from my hip surgery.  
I will be able to celebrate another wonderful Christmas together with my family. 
 
Greetings to everyone  :D 
 

Linda

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Kmiles's picture
Replies 28
Last reply 12/12/2014 - 9:24pm

Hey guys,

I'm trying to plan for 2015 and the upcoming interferon one month IV followed by the 11 months of injections.  I know that no two people are alike but I'm trying to figure out working, family trips and just life in general. 

Were you able to work during the month of daily IV?  What about during the injections phase?  We have a multi family Disney trip planned... I'm trying to figure out if that is possible or not?  Hubby needs a knee replacement that was planned for February.  I want him to go ahead and do it so we can take care of each other together.  He wants to postpone it.  

One more, one more question.  Would you suggest a port?  My gut is saying yes to the port.  What is your thoughts?  

Can someone loan me their crystal ball??? I love to plan everything in my life... I'm thinking this is not for me to plan!  

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rick1981's picture
Replies 10
Last reply 12/8/2014 - 2:16pm

Hi everyone, My wife (Stage IV since June '14) has started on Keytruda Wednesday this week and she also got a shot of Xgeva to strengthen her bones. She was in a pretty good physical condition at that point, walking every day, feeling well - but she has gotten severe bone/joint pains and has had fever & sweating spells since. I have looked at the archives here at MPIP and have found that Pembro can cause arthritis-like symptoms and the Xgeva could cause the fever. But if you have any more thoughts, I'd be happy to hear as it's just a shock to see her move from such a good state to being bed-ridden after the start of Keytruda. Just hope these are side effects (and not directly due to the melanoma; she had "tumor fevers" in June) and that these are signals of the therapy working. It’s scary to see her change so quickly... Thanks for any advice!

 

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Maureen038's picture
Replies 14
Last reply 12/16/2014 - 10:39pm

There are many very courageous  warriors out there that have signed up for trials with any of the big pharmaceutical companies. The patient has to sign a mountain load of paperwork and give more than 20 vials of blood sometimes and weathered many side effects to try to save his or her life. My husband had hemoyltic anemia after his third dose of ipi/nivolumbab .There are many very dedicated and compassionate  doctors who stand along side of the patient and do everything possible like my husband's physician, Dr. Kirkwood. I think he just assumed BMS would do the right thing. The official word is NO. My husband can't stay on the trial of ipi/nivo because it's working SO well that 8 lung nodules and 5 lymph nodes don't show any activity on the PET scan and they continue to shrink and/ or stabilize. Unfortunately, he has to have VATS   Surgery for the one lung nodule on Dec 22. Please say prayers for my unbelievably brave husband who has worked full time most of the time while going through HD interferon, TIL therapy at NIH and now this trial. If all goes well with the surgery, he will only have 2 spots that showed very little activity.

Wouldn't it make sense that BMS would want this tissue to explore why it didn't work on this one nodule? Couldn't this information possibly help other patients? After my husband has been on nivolumbab over a year, wouldn't they want to have the chance to "cure" a patient? No!! They make billions of dollars while the patient has virtually no power at all.  After surgery, my husband will have to switch to Mereck's Keytruda and hopefully he won't have any new side effects.

Who is looking out for the patients at Big Pharma? This rant is dedicated to Nick Auden and the countless other vibrant lives that have been lost because saving lives is not the number one concern to Big Pharma., making money is. Shame on you  Big Pharma because if your husband or wife had this disease you would NOT play by the rules you make!!!!

Maureen

 

 

s

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SABKLYN's picture
Replies 2
Last reply 12/6/2014 - 4:41pm
Replies by: SABKLYN, Marianne quinn
Mat's picture
Replies 2
Last reply 12/5/2014 - 10:20am
Replies by: arthurjedi007, Bubbles

In 2013, there was a Phase I trial combining dabrafenib and ipi.  (There was also an arm that included mekinist, but it was suspended due to a disproportionate number of patients experiencing colitis.)  As a Phase I trial, the purpose was to test safety and tolerability--but does anyone have a sense for how the patients on this trial are doing?  At one point in the not-so-distant past, folks were very optimistic about this combo.  Thanks.

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Emcjones1's picture
Replies 3
Last reply 12/5/2014 - 1:07am
Replies by: Momrn5, Emcjones1, BrianP

Quick questions for those who have had PET CT scans, did your oncologist mentions the presence of nodules they would be keeping an eye on that showed up in CT, but we're not active on the PET. I am wondering how common this is?

i suspect it is common, but am wondering.

 

thanks 

Genie

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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Anonymous's picture
Replies 2
Last reply 12/5/2014 - 12:17pm
Replies by: sweetaugust, DZnDef
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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New webinar on MIF.  It's titled "Melanoma 101" and as the name somewhat indicates, those that have been in the game for a while may not learn anything new.  However, the longer it goes the better it gets and toward the end there was some pretty interesting information.  The first 30 minutes is more prevention but after that it gets to treatments which Stage IVers will find more relevent.

http://melanomainternational.org/webinar/2014/12/melanoma-101-a-brighter-outlook/#.VH3oJzHF_Ls

Brian

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Anonymous's picture
Replies 4
Last reply 12/5/2014 - 11:31am
Replies by: StephyD83, Janner

Hi Everyone-

I wanted to get everyones opinion on this. How likely is it that I can have matestis since the Shave biopsy that was done in November 2012 was said to be Severly Atypical and never removed any further when in fact it was Stage 1A .4mm with occasional mitotic figures & peripheral margins involved. It wasnt until March 2014 that I had the re-excision and it was found to be a Scar with residual Melaonma In Situ extending to within 1 mm of the peripheral margin and it says that the dermis is alteres by a moderate degree of solar elastosis.

So now it has been 2 years & I still do not have the propert 1 cm margins as of yet.

Any advise is welcomed.

Thanks!
Stephanie

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kalisama's picture
Replies 6
Last reply 12/8/2014 - 8:33am
Replies by: kalisama, ncdaniel, mary1233

landed in the hospital, when i thought i was going for a final yervoy treatment. my body had other ideas. still looking towards starting the Keytruda, but am focusing on getting my strength back for a few weeks first.

question, we haven't heard about Temador in many years. my onc is suggesting i go on this due to my proclivative towards brain mets and LMD. he is suggesting i start this now and use it in combo with the PD1/

this is starting to sound a bit mad scientist to me. has anyone with brain mets here had any success with Temador. i've searched the forums and while people were having some success, this was quite a while ago. there were threads of people combining with early PD1 trials but i found little follow up.

if anyone has gone this route or has thoughts about it, i am very open to hearing.

as always, thank you in advance and bless,
kali

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