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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Hi Y'all,

I had my first Ipi a week ago. Tonight I found a new node, on the opposite side of my neck.  My "bad" side has the string of nodes, which seem to be swelling slightly but are not painful.

I've not had any swollen nodes or issues on this side, and just had an MRI of my neck 2 weeks ago. It came back "ok" for this side.

Has anyone else done Ipi, then had swelling in nodes that were previously clear? I'm trying hard not to panic and am praying that it means the Ipi is working on a potential future problem area.

Thanks,

TracyLee

Stage IV 5/16/11 - scalp/neck/lungs

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Lisa13's picture
Replies 5
Last reply 6/5/2011 - 8:53pm

Monday is my follow-up scan to see if any of those tiny nodules on my lungs have changed. I'm hoping they havn't since no change can be a good thing, especially when they're too small to tell what they are. That being said, 2 weeks ago I completed my blood work which was normal - my LDH was 181 and on April 28th it was 166.  Is this still normal?  Can having a normal LDH mean that melanoma isn't spreading or present in large amounts?  Obviously I'm thinking a million different things right now due to scanxiety, so any explanation would be helpful.

I really hope like alot of you that these nodules won't be there, won't have grown and if still there, will continue to not change for years.  If the plan changes, then I deal with it.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/5/2011 - 6:26pm
Replies by: Vermont_Donna, ValinMtl, King, Terra, Anonymous

Anyone heard how both these 2 wonderful ladies are doing.

Iam a little concerned because they have not posted  for a long time.

Jamie

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ShariC's picture
Replies 16
Last reply 6/5/2011 - 4:34pm

Hi All - I'm afraid I have a type of post that is fairly common and I'm just needing to sound off and express my anxiety to a group of people that can understand and empathize.  I'm Stage IIIc.  Finished biochem last February.  Over the past 10 days my stomach has become increasingly bloated and uncomfortable.  I changed the way I ate, rested differently, exercised, rested, etc...  Anything to alleviate the issue.  Its getting worse.  I would now characterize my abdomen as distended and its increasingly uncomfortable.  I called my oncologist and his nurse recommended I expedite my PET scan.  It is tomorrow AM.  I hope to have results by tomorrow afternoon.

I'm a wreck.  I KNOW many, many of you have been through this...and it doesn't matter how much you prepare ... its NEVER a good day to find out your cancer is back. 

MM is so random and variable.  Some people get years ... some months.  At any given time I try to tell myself to be happy with whatever time I do get. 

Maybe its not back, maybe this is an over-reaction? 

Thanks for listening.  - Shari

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Gene_S's picture
Replies 9
Last reply 6/5/2011 - 4:12pm
Replies by: Jim M., Melanoma Mom, Lisa13, Anonymous

Just wondering what your thoughts are about taking "Selenium" to help boost your immune system?

It seems that since this "beast" called melanoma came into my life, my full time job is now to find a cure for it!  :-(

My research shows that melanoma patients need to take Selenium, if so how much a day?

What are your thoughts?

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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stanscott's picture
Replies 1
Last reply 6/5/2011 - 2:02pm
Replies by: Carol Taylor

I did see the Derm on Thur. Found a Basal cell on shoulder and possible mm on leg will know more in a week or so. Thank you for encouraging me to go. Now seeing the group at Wake Forest Baptist.

Stan

Music is the river that navigates history.

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chenrydh's picture
Replies 6
Last reply 6/5/2011 - 9:56am
Replies by: chenrydh, Gene_S, Vermont_Donna, nickmac56, Anonymous

HI there - I will be finishing up my 4th infusion of IPI on the 8th of June, then will be following up with the scans over the next several weeks.  If the IPI has worked does anyone have any idea how long it would be inbetween time in order for me to do it again?  I've been told my other patients, as well as my drs. that the IPI has shown to have worked far after the last infusion so wasn't sure if it would be given again or I'd go into a wait and see pattern.  With melanoma and how fast it spreads I just am concerned about the length of time especially since I have mets in my brain and lung.  Thanks and to all who are dealing with this terrible disease stay strong and know that so many people are praying for you.  <3  

With God all things are possible. Never, never, never give up.

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Becky's picture
Replies 8
Last reply 6/5/2011 - 8:42am

Ben had a Pet scan yesterday and my mom scanxiety was in full force. He got the news today, all clear :)

Kepp fighting, everybody

 

Becky

Mom to Ben, age 22. Oral melanoma (tongue) stage 3, one year of interferon. 23 months NED

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FormerCaregiver's picture
Replies 9
Last reply 6/5/2011 - 12:47am

Here is my updated list of some of the most promising treatment options (depending on
eligibility criteria). Although I have tried to list them in order of efficacy, I am
really just making some educated guesses here.

1. Adoptive cell therapy (also called TIL treatment). It looks like this offers the
greatest chance of achieving durable remission in some cases.

2. GM-CSF (Leukine) together surgery when needed. Some long-term melanoma warriors are
using this approach.

3. Yervoy (ipilimumab)
4. BRAF and MEK inhibitors
5. IL-2
6. Other treatments such as chemo and biochemo.

The biggest problem that we face in trying to decide on treatments is a lack of reliable,
unbiased, and up to date information.

The other main thing to keep in mind is the medical term "overall survival". As far as I
know, only adoptive cell therapy and Yervoy have been shown to improve this in a
statistically significant amount of patients.

I look forward to your comment on the above.

Best wishes

Frank from Australia

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FertilityDoc's picture
Replies 4
Last reply 6/4/2011 - 9:15pm
Replies by: King, Carol Taylor, lhaley, awg

I just had my now biannual CT scan. Nothing of note to be found. The conditional survival curves tell me the numbers are looking a little better even though I know there is guarantee. I was diagnosed with Stage IIIB Melanoma in 04/2009. Had 2 positive nodes with microscopic disease but an ulcerated lesion. Had 2 weeks of the pity party but then moved on. I cursed the Meyer-Kaplan curves did. I know my tumor biology would determine the future and I have no control over that. It is the luck of the draw. I did the full year of interferon. Now 2 years later I sleep peacefully. I read the posts here at least once a week. I have to stay vigilant and read on the subject. None of know what the future holds. Sometimes I get teary eyed late at night when I read the heart wrenching stories here. My heart goes out to all desperately fighting for more time with their loved ones. One of reasons some of us come here is to read about the success stories. Hope is our most powerful ally. I post here today to remind everyone there is hope. Don't give up. Hug those close to you. None of us know what tomorrow will bring but treasure the day.

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LynnLuc's picture
Replies 8
Last reply 6/4/2011 - 5:29pm

I had my appointment with the ophthalmologist today...Dr Weber wanted me to go to one because I was having vision issues...now I know I am just getting old...and the fact my allergies will not ho away way down in sunny, humid and moldy Florida.  The anti PD 1 drug can cause blindness on rare occasions so we wanted to be sure my eyes were ok.. The eye guy says I have very healthy eyes,lens are clear and good, the nerves are great, the pressure is good and all the other stuff inside my baby blues are handing life very well. I have 20/20 for far away and I need plain old readers  to read close up...

Driving home was a challenge though..eyes dilated and numbing drops still in full effect  in them...sun so bright  it was like standing with a search light in my eyes...put on amber sun shades and drove slow all the way home. Went off the road a few times and had a laugh at my self because if the cops would have pulled me over...here is a social worker who had the biggest pupils ever...I bet they would have had me do a pee test right on the side of the road! 5 hours later and they are still wacked out!

Aw... the windows to my soul show nothing going on...tis good news! On the 8th ( Wednesday) I get the scans, blood work and visit Dr Weber and if I am NED still I go on to  take my first booster IV of anti PD 1 since the trial 3 months ago.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Lois54's picture
Replies 1
Last reply 6/4/2011 - 4:04pm
Replies by: NancyGM

Good morning--one of my friends posted this on my facebook. It is produced by DCMF in Canada, titled "Dear Sixteen Year Old Me"----very powerful!!!

http://www.youtube.com/user/DCMFCanada 

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Carol Taylor's picture
Replies 16
Last reply 6/4/2011 - 3:41pm

Carolb's sister-in-law posted this on Melanoma Prayer Center's wall less than 25 minutes ago:

brother just posted this...AT 10:35 her BP was79/65, at 10:45 it dropped to 61/22, at 10:55 it dropped to 48/30, they put her oxygen back on her and now at 11:00 its 51/27

Please lift her up.

Lord, in Your mercy, we lift CarolB to You. See her thru this and hold her family. Amen.

Grace and peace and sorry for how small that copied/pasted,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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boot2aboot's picture
Replies 8
Last reply 6/4/2011 - 3:15pm

More mel was found under my armpit...seems to remain local...found out this new info while in hospital for port placement ...new consences urges more surgry with radiation and biochemo after....or something stronger if it has spread....won,t rescan until surgery and rad is done....last pet was may 17...
Boots

don't back up, don't back down

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