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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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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sheri47's picture
Replies 1
Last reply 6/3/2011 - 8:03pm
Replies by: LynnLuc

 i know with breast cancer once you have radiation you cannot have it again in the same spot, with my mom the offered radiation for pain and to shrink the 3 masses  my question is if the masses grow bigger after rads can she have it again for pain control

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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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jblue's picture
Replies 6
Last reply 6/7/2011 - 1:44am

www.wemkea.com

Janaury 28th 1980 - June 3rd 2007

 

Our little girl  Josslyn

4 Years old

/http://postimage.org/image/1xgttm4ec/

 

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boot2aboot's picture
Replies 0

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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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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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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Ranisa's picture
Replies 4
Last reply 6/6/2011 - 6:30pm

Had orginal mole removed on July 7, 2010.  Melanoma Dx on July 21st.  SLB and WLE on July 26th.  Results of SLB on August 5th.  Report says no cancer found....so they got it all when they removed the mole on the 7th.  BUT I didn't get the report of all clear until the 5th.  I am just so looking forward to that 1 year mark.  Even if it is just a month sooner....kind of curious.

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I start my first ever treatment for my stage IV melanoma on Monday, June 6th at California Pacific Medical Center with Dr. Wang and Dr. Minor.  The regimen is IL-2 + interferon + 3 chemo drugs.  Here's a link to a whitepaper that helped to convince me to go this route.  http://theoncologist.alphamedpress.org/content/14/10/995.full  That, and the fact that my mutation is wild type NRAS Q61 so the new BRAF stuff isn't available to me. Although I like the approach of TIL therapy at NIH, I do not have a big enough tumor for them to work with, just many in the lungs, one lymph node and a bone met on my rib. 

Choel, username boot2boot on this board, started her biochemo today at a hospital in Ohio.  I spoke with her Tuesday and she seemed to be doing pretty well, but about as fearful as I am of the treatment.  Are there any veterans out there of biochemo or even IL-2 who can chime in and help me get my head into a better place?  I will be sure and post my experience as soon as I am able.

Thank you in advance for your comments.  This board has been invaluable to me.

God Bless.

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Anonymous's picture
Anonymous
Replies 19
Last reply 6/12/2011 - 12:25pm

i was recently diagnosed w melanoma.  there were 2 biopsies.  one came back "malignant melanoma in situ," and the other came back "malignant melanoma of superficial spreading type, invasive to a breslows depth of 0.72mm, clarks level 3."  but the biopsies were from the same lesion, just different portions of it.  and i cant get anyone to answer if its possible the depth could be increased in the location mole originated.  im just trying to understand how this disease acts. so far ive been told the same lesion shouldnt have come back w different pathologies, but it did. any help is appreciated...

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Geez................  trying to research and be proactive is important but time consuming.  :-)    Since I'm less than 2 months in on this MM journey, I can only imagine how much time and how many questions have already been spent in the proactive research phase by other patients/participants on MPIP.  

I spoke with a clinical trial specialist today and the only clinical trial in my area is one with high dose Interferon, so I will speak to my oncologist about it.  I know there are both pros and cons regarding Interferon, and I am in daily prayer asking for guidance about making the right decision.

Molecular profiling (utilizing the Target Now program) was also mentioned.  Has anyone participated in this?  If so, was the information gained beneficial to your treatment?

Sharon in GA, stage III

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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alicia's picture
Replies 3
Last reply 6/3/2011 - 6:55pm
Replies by: SharonK, alicia

Hey friends,
I have an app to see a Dermatologist Dr Ellis in Nashville soon. Just wondering if any of you have ever been to him and have any tips as to what I should bring or questions to ask while there. I have had 3 melanoma primaries first in 2006 stage 3 with positive sentinel node did interferon, second was July 2010 stage 1 Clark 2, and third melanoma primary surgery this Jan 2011 stage 2 Clarks level 4. I see a dr at Vandy who is referring me to dr Ellis cause he says I have a genetic mutation and all melanomas occurred after pregnancy thinking the decreased immune system plays a big part in these new primaries. Im still seeing my local derm In ky but my dr at Vandy feels it's important to see this derm cause he sees a lot more melanomas and possibly may have a clinical trial or better advice. It's just a bit far 5 hr drive and I just wonder if u all think it's beneficial or would I be just fine seeing my local derm. I want the best care and to be ahead of the game if something does pop up. Have any of you ever been to him and what did u think?
I just turned 29 and was diagnosed with my first Mel after just turning 24 I feel like I have a black cloud over me but Im still trying to live life to the fullest and enjoy every moment with my babies n family. I know a lot of you are dealing with way more scarrier situations than me and I continue to pray for u all as I read the devastation on this board. Thanks for taking the time to listen and be there for me. You all are truly great:-)

Thanks so much for your time,
Alicia

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awg's picture
Replies 8
Last reply 6/3/2011 - 7:41pm

Hello Everyone,

 

I recently had a node dissection (with muscle moved) on May 18th and I and looking for feedback on recovery process.

I currently have all sutures still in place as well as 2 drains. The drains and sutures are schedules to be removed on June 10th. My drains are still producing between 75-100cc per day. I do not have any lower leg edema at this time but I do have some swelling and tightness in my upper thigh on the lateral portion.  I have no problem walking but the tightness is noticeable and my stride is guarded (by choice) to protect my incision site and sutures.

In your experience...

What is a normal average time for the fluid output to drastically decrease and or stop?

Will the tightness and swelling in my upper thigh decrease over time?

What are some techniques I can do once the drains are removed to assist in moving the fluid?

 

Thank you,

 

Allen

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Carol Taylor's picture
Replies 1
Last reply 6/2/2011 - 3:01pm
Replies by: EmilyandMike

Yesterday I found a site that updates medical news from around the world at least daily. Though they cover lots & lots of diseases, conditions, palliative care, insurance, trials, etc... this is the link to their melanoma news, which includes new trials & meds.

http://www.medicalnewstoday.com/sections/melanoma/

Grace and peace,

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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