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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Anonymous's picture
Anonymous
Replies 12
Last reply 1/19/2014 - 11:27am

I've poked around using the MPIP "search" function.  I'm not finding many ipi success stories (other than Jerry from Cape Cod).  Maybe a question for the old timers, but can you recall situations where the patients have had the standard FDA-approved course of ipi (4 infusions) and got great results?  Maybe all of those folks have left their melanoma lives behind and no longer post here?

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Julie in SoCal's picture
Replies 4
Last reply 1/19/2014 - 12:41pm
Replies by: Pink, Globetrotter, POW, BrianP

Greetings friends,

Just wanted to say that I had my first ipi treatment yesterday.  It was easy!  NOTHING like HD-INF.  I even drove myself home (through traffic-grrr).  Everything was easy!

Now I'm mostly just tired.  When I got home I was completely worn out and went to bed early.  I probably do the same today as I'm dragging.  This morning I had a bit of a headache, but this afternoon it's gone.  And of course I'm on the alert for the ipi rash with every itch.  

Just wanted to say how things are going here.  

Blessings,

Julie

 

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Pink's picture
Replies 6
Last reply 1/19/2014 - 3:43pm
Replies by: jahendry12, Pink, POW, Fen, BrianP

First brain radiation today, and the next 3 days

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CasieLV's picture
Replies 4
Last reply 1/19/2014 - 4:01pm

I am a stage 3 melanoma survivor and started my own small business. We sell melanoma t-shirts and give eight dollars of each shirt sold to current cancer fighters in need. We are small, and usually give out anywhere from $100-$200 per person to use on expenses not covered by insurance. Fill out our submission form at wear-awareness.com

 

Thanks and keep fighting!

 

Casie

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JerryfromFauq's picture
Replies 2
Last reply 1/19/2014 - 9:31pm
Replies by: JerryfromFauq, kylez

Last night there were three of us in the chat room. We kept getting bounced out and having to go in repeatedly. Finally we were knocked out and the Chat panel was just a blue panel in the side of the window. That is still what I get when trying To get into chat today. Is this happening to others?

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

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FayFighter's picture
Replies 5
Last reply 1/20/2014 - 1:51am

Hi Everyone!  First thank you all for being on this site. It has been so helpful since my husband was diagnosed with stage 3C in early August.  My husband finished his fourth round of Yervoy (3mg/kg) on Dec. 20th. Soon after he started having colon issues.  They have him on prednisone to help but I am interested in knowing if anyone has been able to modify their diet to also help with the symptoms. Any and all advice is welcomed.  And again thank you.

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Anonymous's picture
Replies 1
Last reply 1/20/2014 - 11:53am
Replies by: Gene_S

My Mom was diagnosed wit stage IV and has had 2 infusions of ipi and has also had a gamma knife radiation procedure for 8 brain nets 4 days before the first infusion. She had 18 tumors on her scalp, 1 large tumor behind her ear and 1 large tumor in a lymph node on her neck. These are very visible compared to those in her brain or trunk and I'd like to know others experiences with tumors like these?

My question is directed to those of you who have had ipi and the results you had as you received the ipi for any visible tumors.

In the first 2 weeks the tumor on her neck shrunk about 50% and those on her head became hard. In the week after her second infusion the tumors on her head seem to be getting smaller, as does the one on her neck.

She is not experiencing anything but extreme tiredness and a bit of diarrhea now. She had a very upset stomach, diarrhea, red spots, heavy breathing, with chest pain just after the first infusion.

If any of you have had tumors visibly change early into treatment can you tell me how your overall treatment went? Did your doctor later say that a early response indicated a higher probability of NED at a later response?

FYI
My Mom has had her followup on the gamma radiation for her brain. The tumors are shrinking and there are no new ones.

Also, she has been taking 1000 mg of cannabinoids and 4000 mg of Tumeric daily. And eating sauerkraut daily since the second infusion. I don't know if the first two things are doing anything, but the sauerkraut is good for the gut and some take it to help with colitis.... Not all sauerkraut is equal. So you should look it up if you want to try it.

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/20/2014 - 2:11pm
Replies by: Anonymous, buffcody, bodrum, Linny, washoegal, ecc26

Hey Folks - just wondering if folks have had issues with lymphedema in the chest/arm.  I had lymph nodes removed under my right arm.  Haven't really had many issues with Lymphedema (although not as careful as I should be).  

In the right chest I've had on and off for the last few years what looks like maybe fluid?  last scans showed thickening of the skin in the right breast.  Of course if you google that it mentions a rare inflammatory breast cancer lol!  thank you dr google!  haha.

I am talking with my doctor about it next week when I'm in.  Just wondering if other folks have experienced this at all.  

Thanks!

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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tschmith's picture
Replies 2
Last reply 1/20/2014 - 5:24pm
Replies by: tschmith, KRob

Has anyone had any positive results from Temodar? I am Stage IV.  I had a brain tumor (melanoma) removed in February of 2014.  There is a small nodule in my lung, right hip, and on the L2 vertebrae.  Most, but not all, of the tumor on the L2 was removed in October.  Two infusions of Yervoy resulted in Pituitary gland problems. The Pituitary has since recovered but my doctor does not want to continue with the Yervoy at this time. I am being treated at Johns Hopkins...we are also looking for clincal trials but something has to be done soon, which is why my doctor is considering Temodar.

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Anonymous's picture
Replies 8
Last reply 1/20/2014 - 5:50pm

More newbie questions.  Wondering who the best melanoma oncologist is in the Washington DC/Northern Virginia area.  We have heard great things about Dr. Evan Lipson at Johns Hopkins.  Just wanted to make sure we go to the best!

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mwcollins's picture
Replies 13
Last reply 1/20/2014 - 6:24pm

Many of you know of my husband, Kevin (kpcollins31). He posts frequently and is very actively researching this disease that has brought us all together. Well, in one weeks time he will have his PET scan to determine if the thickness in his small bowel is a met or possibly something else. I am hoping and praying with every ounce of my being that it is just a resurfacing of his diverticulitis, but the possibility remains. . . Anyhow, there is a nurse on Kevin's team that is in charge of the treatment plans, and basically the facilitator for communication. She and I had a wonderful conversation this morning. She was not sugar coating anything, but at the same time telling me that she can see Kevin being here for many years to come! Such encouragement from a medical professional! She went into details with me about Yervoy and the success that she has seen with it which had me very encouraged as well. Well, Kevin comes home and says that he did more research on Yervoy and said that the studies have shown that 46% of patients live for a whopping 1 year. His thoughts are that he wants to get into a clinical trial that can be even better than Yervoy. I can't and won't accept having my husband for just one more year. Our 4 year old will have little to no memories of his daddy, and that is just unacceptable to me. My question to all of you out there is about Yervoy. For those who have been on it, is it successful (for more than 1 year), are the side effects as bad as he thinks, is the nurse just trying to sell the drug that her hospital bought into? I am so confused! I just want this roller coaster to level out and get him healthy!

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Tim--MRF's picture
Replies 4
Last reply 1/20/2014 - 7:21pm
Replies by: Anonymous, aldakota22, JerryfromFauq

I received word earlier today that Don Morton died, after several years of fighting different cancers.  Some of you will know of Dr. Morton through his work as a pioneering melanoma surgeon and years of service is Chief of the Melanoma Program at the John Wayne Cancer Institute.  I am sure we will hear more about him in the next few days, but we have certainly lost one of the giants in the field.  Dr. Morton pushed research forward in many ways, and his efforts saved thousands of lives through the years.

Tim--MRF

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Anonymous's picture
Replies 12
Last reply 1/20/2014 - 11:03pm
Replies by: JerryfromFauq, POW, jahendry12, Anonymous, Webbie73, ecc26, Bubbles
bodrum's picture
Replies 5
Last reply 1/21/2014 - 3:39am

Is this possible?  my birthmark turned out to be BRAF positive but the result of the SLND turned out to be BRAF negative.  The pathalogist found 6 cells in one of my lymph nodes.   Now, one of the doctors is saying that maybe those 6 cells are not melanoma... 

I'm about to get the CLND. So confused.... 

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vincenl's picture
Replies 5
Last reply 1/21/2014 - 9:38am
Replies by: Anonymous, jack6020, vincenl, Janner, JerryfromFauq

 

I have a question: about 1 1/2 year ago I had a mole on my back removed. This happend in the largest academical hospital in Amsterdam. The result whas strange: my dermatologist said they where sure that it whas not a melanoma but they could not really say what it whas.

My dermatologist recommed to remove extra margins around it, to make sure it would not grow back. I,m not sure how big those extra margins are I think between 0,5 and 1 cm

It might be important to mention that before the mole or whatever whas removed I pick alot on it and tried to scab it off myself. Not a smart move I know but this might be the reason why they could not really see what it whas.

My question is does this happen more, that they could not really say what it is? and can they exclude melanoma but no say what it whas?

 

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