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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DonnaK's picture
Replies 5
Last reply 7/29/2013 - 11:23pm

HI All-  My husband, John, has Stage IV melanoma with mets in his lungs, lymph nodes and brain.  He was on Zelboraf for 7wks but had to stop due to significant liver toxicity.  While waiting for his liver to recover (~2wks), his brain mets re-grew (they had shrunk considerably after just 3wks) to as big or bigger than the original size.  As a result, we chose to start WBR immediately and are hoping to add in Ipi at the end of this week.  (Sadly, SRS is not an option right now as the number of mets are "too many to count", although they are reasonably small.) Has anyone else been through this combination?  If so, at what point did you add Ipi and how did you control the swelling?  John is on 5mg of prednisone as he has minimal swelling, but woke up this morning with a terrible headache.  The radiologist wants him to increase his steroids to control swelling but the oncologist wants him to taper off the steroids to maximize the ipi effect.  For today, he settled for oxycodone which seemed to control the pain, but I suspect the swelling will only continue, particularly if the treatment works.  I'm trying to avoid increasing the steroid level because we will have to delay the Ipi another week, but I also can't stand seeing him in such pain. Any advice??

Also, if anyone has some positive stories with WBR and/or ipi on brain mets, I could really use a happy story to alleviate this nightmare we are living.  

Thanks!!

Donna

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BrianP's picture
Replies 8
Last reply 7/29/2013 - 11:14pm
Replies by: Anonymous, BrianP, POW

Anyone ever heard of or tried this product.  I just saw a physician that highly recommended it.  The Product info is here:

http://www.theharmonycompany.com/product/AveULTRA-Avemar-Fermented-Wheat-Germ-Extract 

 

More interesting, the supporting data/clinical study info is posted here.  The first paragraph talks about study results in patients with melanoma.  The results are overwhelmingly positive.

http://www.avemarresearch.com/TOC.html 

 

You know what they say about stuff on the internet, it has to be true, right? (that's sarcasm by the way).  It does sound legit though and they claim the inventor is a nobel science awardee.  The stuff is about $150 a month so it's not cheap.  It just seems like the claims are too good to be true without having more widespread knowledge of the product.  I did a search on here and it was only mentioned twice and neither of those mentions was by anyone that had tried the product or were endorsing it.  Just curious if anyone has any comments.

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Everymoment's picture
Replies 10
Last reply 7/31/2013 - 10:46am

Hi,

So I met with my local oncologist and she scheduled the PET scan for this Wednesday. She wasn't too concerned that I just became anemic within the last 30 days which I see as a huge red flag just in general. The fact that I've never been anemic and now all of a sudden I'm anemic with all these other issues. Anyway, only 1 more day of waiting to get scanned and then a couple more days of waiting for results. Send some happy thoughts please!

Isabell

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DeniseK's picture
Replies 4
Last reply 7/30/2013 - 6:22pm
Replies by: DeniseK, POW, ecc26

Hello Everyone,

I'm hoping someone can help me.  I just had my second infusion of Ipi on Thursday July 25th.  Saturday I woke up with the worst pain in my arm just around the sub q on my forearm.  It feels like someone is stabbing me in my arm.  My chest also feels heavy and more back and chest pain than normal.  The sub q on my arm appears to be getting larger as well.  I looked and looked and I could have sworn that this might be normal and a sign that it's working??  I don't know what to do?  Should I call my doctor? I don't think I have much room for growth with my mets and it's scaring the (bleep) out of me.

Thanks for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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BrianP's picture
Replies 9
Last reply 1/6/2014 - 9:39pm

I traveled down to Moffitt this past week to enter a MAGE vaccine trial for Stage IV NED patients.  Unfortunately due to some delays with pathology request the scans I had several weeks ago which indicated no disease are now not recent enough for the trial so I had to get rescanned.  The new scans showed evidence of disease so I had to come up with a new game plan.  I'm now looking to travel back down to Moffitt this upcoming week to enter the BMS Nivo/IPI combo trial.  There's been a lot of press on this new combo but surprisingly I haven't heard of many people on this forum enrolled in the trial.  Would love to hear from someone on the trial if they could share their experinences so far.  Thanks!

Brian

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ad2424's picture
Replies 7
Last reply 7/29/2013 - 12:18pm
Replies by: DEK, Anonymous, JerryfromFauq, vivian, ad2424, Linny, Randy437

After learning of Stage 4 via VAT lung surgery in the summer of 2011 (initial diagnosis 15 years earlier), and having numerous lung nodules all under 1 cm, I did IL-2 in December of 2011 and March 2012.

All nodules have been stable since January 2012.  

I have have scans quarterly since. Sometimes just chest, other times chest, abdomin and pelvis, less frequently brain.

For those in a similar situation, what is the frequency of your scans. I seem to have no particular protocol.

Thanks.

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Anonymous's picture
Anonymous
Replies 17
Last reply 7/31/2013 - 5:56am

I just wanted to say that I apologise for any offence I may have caused regarding my reaction to POW's post and my subsequent advice to him/ her. This was not my intention.

I can fully understand that as a former caregiver the information given by POW is well appreciated but I personally feel upset that Gina and Vicki found me to be  "rude" and insulting.  I realise that my posts were rather curt so let me try and explain myself more...

As a melanoma sufferer, I do not feel myself to be part of a "club" on this forum and, rightly or wrongly, I feel uncomfortable with this term as to me it is more reminiscent of Facebook with its more social approach.  That's just my opinion and I recognise that others like the sense of feeling they have joined a club.  Each to their own but I'm an individual with melanoma  facing my own individual experience.

My advice to POW was meant to be well meaning from his/ her side of the equation, not from the side of those who value her replies.  I can understand that POW has gained a lot of knowledge during the role of caregiver  and kindly takes the time to impart this via the forum.  I can see that continuing to contribute to the forum following POW's sad loss may well help POW come to terms with this.  Perhaps, though, it is also good to step back from the world of melanoma when you don't have to be part of that world.  The melanoma sufferers and current caregivers have no choice but to be part of this surreal existence.  I feel particular concern for POW when he/ she continues to post so regularly and use the word "us" as really only those currently living with melanoma and their caregivers are part of the "us" group.

So Gina and Vicki, you probably still don't understand but I've tried to explain.  In particular Gina, please don't pray for me as in common with many other people I don't believe in God.

Also, I see no problem if I choose to post anonymously as most do the same in effect as their forum "names" give no clue to their real identity so are choosing privacy.

 

 

 

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dhrahn's picture
Replies 2
Last reply 7/29/2013 - 4:53pm
Replies by: joy_, WendyPam

Hi everybody - My husband was diagnosed 1 year ago with Stage IV melanoma.  He has been on zelboraf for a year and we had some awesome results but both adrenals are tumors and have started growing again as of last week ct scan.  Devastated, yes.  This last year was almost surreal because my husband was feeling overall really good.  Our oncologist has now presented 2 options...  yervoy or clinical trial.  What do we do?????  We are heading up to Angeles clinic in Santa Monica this Monday and then plan to fly out to Moffitt but I questioning if we should stick with yervoy..... As all of you know this is all so overwhelming.  Any advice would be greatly appreciated. -Holly and Dave

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Everymoment's picture
Replies 4
Last reply 7/28/2013 - 3:11pm

I appreciate your support. We are ruling things out which is making me more nervous. My recent blood work came back as being anemic which is the first time in 35 years! Now my oncologist is starting to think that we do need a PET scan. She said that although rare I could have a tumor somewhere that could possibly be bleeding which could have caused my stroke. The infectious disease people ruled out viral and bacterial infections. We have ruled out everything. I feel like melanoma is the elephant in the room. What a challenging two months mentally.

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mscala's picture
Replies 3
Last reply 7/27/2013 - 4:59pm
Replies by: Everymoment, mscala, Anonymous

Hello,

I had a dime sized superficial melanoma removed from my right buttock.  I remember the doctor saying it was .48 and we caught it very quick.  It was pink in color and she said it's good I came in right away because those tend to be more aggressive.

They did a wide excision of tissue, got 10 stitches which will get removed 8/2/2013. 

Just saying hello to the community and wish everyone the best!

Matt

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Does anyone know of a way to eliminate the constant bad taste in your mouth? No food tastes the same, it is not a metallic taste just a sour type taste of all foods. Husband is on Zelboraf 2 240 mg in am and 2 240 mg in pm. Does this drug normally alter your taste?

We are in it to win it!

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Tim--MRF's picture
Replies 1
Last reply 7/27/2013 - 6:59am
Replies by: randallgford

I was contacted by a reporter who writes for a well known national magazine and is writing an article on the stigma of cancer.  The question is this:  Do people with cancer diagnosis experience stigma not associated with other diseases (such as heart disease)?

In particular she asked if people with melanoma are asked about their habits.  Did you use sunscreen?  Did you go to tanning salons?  Did you get that mole checked out when you first noticed it?  

If you get these questions, how do you handle them?  How do you feel about them?

No names will be used in the article without permission.  Mostly this is a request for feedback.

You may post here, or contact the reporter directly.  Her name is Charlotte Huff, and I have read her pieces in the past--she is quite good.  Here is her email:   charlotte@charlottehuff.com. Her deadline is next Friday, Aug. 2.

I think this is a great topic and would love to see the voice of the melanoma community well represented in this piece.

Tim--MRF

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GAngel's picture
Replies 29
Last reply 6/18/2016 - 9:31am

Hello all, I am fairly new to the site.  I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month.  His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so debilitating that they reduced his dosage to 3 pills x a day and an every other week schedule. His last visit to the oncologist a few days ago revealed that he was still responding positively. Despite the great results we opted for the new treatment because  his oncologist advised that the side effects are less severe, and the results better, so this is our hope.  I was wondering if any of you are on the combo and if so how are you doing?

Thanks for reading and I will keep you posted on my husbands progress! I am praying for all of you who are fighting this dreaded beast, you are true warriors, may the Lord be your strength through it all! God Bless you and yours.

Sincerely,

Gina (wife to Rudy)

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Hello all, I am fairly new to the site.  I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month.  His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so dibilitating that they reduced his dosage to 3 pills 2x a day and an every other week schedule. His last visit to the oncologist a few days ago revealed that he was still responding positively. Despite the great results we opted for the new treatment because  his oncologist advised that the side effects are less severe, and the results better, so this is our hope.  I was wondering if any of you are on the combo and if so how are you doing?

Thanks for reading and I will keep you posted on my husbands progress! I am praying for all of you who are fighting this dreaded beast, you are true warriors, may the Lord be your strength through it all! God Bless you and yours.

Sincerely,

Gina (wife to Rudy)

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Tina D's picture
Replies 3
Last reply 7/28/2013 - 4:49pm
Replies by: NYKaren, buffcody, Fen

I got the call from Vanderbilt today that I am in the PD1 trial and I got randomized into the PD1 arm. I am happy, but also so aware that every single person who enters this trial needs the PD1. So, I am grateful..so grateful. But, I am sad that not every single person gets to just start out with the PD1. At least in this trial there is a cross-over, and I am glad for that. They had 2 people crossing over this week, actually.

Tina

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