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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Maureen038's picture
Replies 28
Last reply 9/12/2013 - 3:35am

I love the new web site! Excellent job Tim and to all the other people involved in the changes.

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Junk1962's picture
Replies 9
Last reply 9/14/2013 - 4:41pm
Replies by: TSchulz, HopefulOne, katie1, karebear1905, Junk1962, Anonymous

My husband decided on this clinical trial at DFCI. After reading so many posts I can't believe no one else is in this trial?? Am I just "searching"
The wrong way? I've put in many ways to search for other participants-no luck! He is starting the trial on Tuesday and got the 10mg ipi arm. Since he is currently NED and we have only had one large (15mm) tumor in his leg removed in June-we would love to hear from other stage III -stage IV patients who went right to ipi after initial diagnosis (and resection) before any other signs of spreading. So many posts here show great success with ipi shrinking tumors! But, thoughts on ipi when no tumors or mets are present? Need a crystal ball!

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blden2186's picture
Replies 4
Last reply 9/14/2013 - 4:06pm
Replies by: blden2186, ecc26, maryb-z

Just took my 1st dose of the 11th months maintenance of Intron A. Does anyone know if it helps to ice the injection site before you give yourself the shot?

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/30/2013 - 10:49am
Replies by: Cindy VT, Anonymous, bkinman, POW, pd1gal

Sorry to post this as "anonymous", but I have family members who are active readers of this site, and I don't want them to panic.  Also, I don't quite want to admit to myself that I could have brain mets.   So...in the last few weeks, I have had the weirdest feeling that my vision is a little off, that I have to remind myself what I am doing, especially when driving, that I am feeling pretty sad, and that I am breathless and dizzy sometimes, even though I continue with my fairly strenuous exercise routine for a 62 year old.  I have been stage IV for almost 24 months with only surgery as treatment.  I imagine/hope this is just depression, ( I have suffered from that before), but the vision thing is different , and so is the feeling that I am forgetting how to drive.  I realize that the symptoms of brain mets differ depending on what part of the brain is affected, but I would love to hear how brain mets manifested themselves to any of you.  I  do have chest, abdomen and pelvis scans scheduled for a month from today, but I could add the brain.  Don't really want to know, but perhaps that is childish!?  Please help by sharing your experiences.

Love and light to all.

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bj63's picture
Replies 7
Last reply 9/12/2013 - 3:08am
Replies by: JerryfromFauq, bj63, Anonymous, POW

This is a great summary of the latest drug therapies for the treatment of Advanced Melanoma (both FDA approved and investigational).  I found it really helpful and I thought I'd share.

http://www.onclive.com/publications/obtn/2013/August-2013/Novel-Agents-Revolutionize-Melanoma-Treatment

bj63

Sometimes no news is the best news!

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Kim K's picture
Replies 5
Last reply 9/8/2013 - 2:33am

Just stopping in to say Hi.

I also "graduated" to yearly visits to my surg. onc.  I see the med. onc in March.  Hopefully I can graduate to yearly visits with him as well.  I would love to stagger one in the summer, and the other in the spring so will still be monitored every 6 months.  Either way, there must be some reason why I am sticking around.

I am so happy for my girls, Emma now 5, and Jade now 8.

Aloha Y'all'

Kim

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Becky C.'s picture
Replies 3
Last reply 9/8/2013 - 2:48am
Replies by: tasjacques, Bubbles, BrianP

Hi. I wanted to ask any patients that are on anti-pd1 if it made you sick soon after receiving treatment I have been getting sick on day two. Doctors seem really surprised by it. I appreciate any feedback.

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JoshF's picture
Replies 4
Last reply 9/7/2013 - 10:13am
Replies by: JoshF, MattF, JerryfromFauq

Saw oncologist this morning who felt lump in scar. Set up appt with Head& Neck Surgeon/ENT this afternoon. He thought it could be a clogged partoid duct from original surgery. That being said they won't risk wait & see. Luckily got MRI scheduled tomorrow. He was going to speak with onc about doing PET scan. He said nodule was around 5mm. He prefers this over cutting open my face. I didn't think a PET would light up a 5mm tumor. Anyway I'm extremely nervous and know someone who had Mel on scalp and then go to parotid gland. Doc said doesnt think gland would be involved. Any thoughts? We've all seen some scary stuff so I'm trying to prepare for worst. Keep up the fight!

Josh

Let's work for better treatments....for a cure!!!!

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Tim--MRF's picture
Replies 6
Last reply 9/10/2013 - 1:40pm
Replies by: bj63, nancyg, Anonymous, BrianP, JerryfromFauq

All,

As I mentioned last week, the MRF’s website is about to experience an impressive transformation. The new look and feel of the site will launch on Monday, September 9 – just 3 days away!

One of our top priorities is to make sure MPIP and other community resources are preserved. In order to do this, we will be migrating all of the existing discussions, threads and active user profiles over to the new site. We are working with an extremely qualified partner to do this and we don’t anticipate this impacting you or the MPIP forum. However, just in case, we suggest you avoid posting in the forum from 4 a.m. to 12 p.m. EDT on Monday, September 9. During this window, we will be transferring all the above mentioned content. If you do post during this period, we recommend you make a copy in case there are any hiccups in the migration.

Not only will you see a vast improvement in the navigation and look and feel of www.melanoma.org, but you’ll also see your posts on this forum appearing faster.

We look forward to hearing your thoughts on the new site!

Tim - MRF 

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nancyg's picture
Replies 10
Last reply 9/10/2013 - 9:18pm

My husband did ILl-2, 14 doses... Has tumors in
Lymph nodes in chest and a mass on lung-- went for
His CT scan today-all of the tumors grew, but
there are not any new ones anywhere else ..that they could see on the
Scan.... Now waiting to see if he has NRAS mutation
For a clinical trial... Also trying to get insurance to
Approve Ipi... So disappointed and frustrated...does anyone
Know the percentage of people that ipi helps??
For IL-2 it was 20%
Thank you so much,
Nancy

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Janet Lee's picture
Replies 8
Last reply 9/10/2013 - 9:15pm

My husband, Don, began Ipi treatments on May 20th, after Zelboraf worked for only 2-3 months. The scans Don had this week show definite improvement, and Dr. Flaherty at Mass General said there is no doubt that Don is having a positive response to the immunotherapy. He is so happy with Don’s progress, that we don’t have another appointment for at least eight weeks!

Needless to say, we both shed a few tears in that doctor’s office yesterday – tears of joy and happiness, tears of relief. Dr. Flaherty was beaming, and his nurse practitioner came in to give us both hugs. We both recounted how the first oncologist who gave us Don’s diagnosis in January told us there was nothing that could be done and he had maybe three months…. (that was the last time we saw that guy!).

Dr. Flaherty felt the prognosis at this point is positive, but we must remain vigilant with blood tests and scans and MRI’s and see how things go over the next few months. Truthfully, I'm afraid to "relax," although I do intend to enjoy the next several weeks. I would love to hear about any experiences with Ipi showing success, and what comes next? 

In the meantime, Don and I hosted a beautifully romantic wedding for our daughter, Georgi, on August 31st. And yes, Don did get to dance with his daughter! Our attention now transfers to eldest daughter, Tori, who is pregnant with our first grandchild -- a GIRL! -- due 12/31/2013. Don and I can't wait for this, but we will while away our time in Florida for a bit before returning to central Mass for the holidays and baby's arrival.

Heartfelt appreciation to all of you who share this war on melanoma with us.

Janet Lee

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Replies by: JerryfromFauq, BrianP

Have CT scan 1330 to 1500, See Dr Weiss 1600.

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

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Junk1962's picture
Replies 8
Last reply 9/12/2013 - 4:32pm
Replies by: Benpotts, JerryfromFauq, Junk1962, Gene_S, Anonymous

My husband had what doctors thought was a cyst removed on his leg in late may. Two weeks later he was told it may be melanoma!
We were referred to a surgical oncologist at MGH who removed the tumor and was confident the margins were clear ( he did no
Lymph node testing). The tumor was large and thick and after meeting with a melanoma specialist it was determined to be a melanoma
With an unknown primary. He had PET and CT scans all were clear.. he tested BRaf negative. They recommended either interferon or a clinical
Trial currently going on for high dose yervoy (10 mg?) We got a second opinion at Dana farber and they feel the same. Dana just repeated all scans
And a brain MRI -NED. The high dose Yervoy trial has been having a few incidence of bad side effects (colostomy-even 2 deaths!) we are starting to have our doubts about trial. We know melanoma is a terrible disease but none of these treatments seem to be a cure. Given no recurrence, or evidence of disease we are nervous about quality of life. We know interferon is no picnic but, we are scared of the high dose trial!! He is not eligible for the lower dose because he has no identifiable tumors or mets. Is anyone out there in the same predicament?? He has to start the trial on Tuesday so any info would be much appreciated!!!!

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My husband had what doctors thought was a cyst removed on his leg in late may. Two weeks later he was told it may be melanoma!
We were referred to a surgical oncologist at MGH who removed the tumor and was confident the margins were clear ( he did no
Lymph node testing). The tumor was large and thick and after meeting with a melanoma specialist it was determined to be a melanoma
With an unknown primary. He had PET and CT scans all were clear.. he tested BRaf negative. They recommended either interferon or a clinical
Trial currently going on for high dose yervoy (10 mg?) We got a second opinion at Dana farber and they feel the same. Dana just repeated all scans
And a brain MRI -NED. The high dose Yervoy trial has been having a few incidence of bad side effects (colostomy-even 2 deaths!) we are starting to have our doubts about trial. We know melanoma is a terrible disease but none of these treatments seem to be a cure. Given no recurrence, or evidence of disease we are nervous about quality of life. We know interferon is no picnic but, we are scared of the high dose trial!! He is not eligible for the lower dose because he has no identifiable tumors or mets. Is anyone out there in the same predicament?? He has to start the trial on Tuesday so any info would be much appreciated!!!!

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/8/2013 - 3:58pm

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