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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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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EmilyandMike's picture
Replies 3
Last reply 6/2/2011 - 11:11pm

A few years ago, I never thought I would follow an oncology conference with excitement. But here I am and I am sure you have seen a lot of news on melanoma due to the upcoming ASCO conference this weekend since melanoma drugs are a top focus at the conference. The results of the Ipi trials are what I am waiting to hear about, but here is a good overview of the "Drugs to Watch at ASCO".    The last paragraph seems interesting - regarding the drug P28 for solid tumors:   http://seekingalpha.com/article/272953-drugs-to-watch-at-asco-2011

AND 

This press release came out today announcing a Roche/BMS combo trial for the BRAF inhibitor and Ipi.  Good news!

http://www.fiercebiotech.com/press-releases/roche-enters-collaboration-b...

Our experience with melanoma: http://emandmichael.wordpress.com/

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mom3girlsFL's picture
Replies 13
Last reply 6/25/2011 - 12:27am

Hi All,

I am 7 mths NED IIIc metastatic melanoma while on interferon.  Off interferon since (sept?) - don't remember.  I am 44 yrs old and started my menstrual cycle when I was 11.  I  have not had a cycle for 2 mths now. NOT pregnant, several tests done.  Belly feels "full" and big, but I also relaxed a little after my CT 6 mths back which came back clean.  When I say relaxed, I mean a little Ben and Jerry's, a better appetite, and so on.  Nothing (that I feel) too extreme diet wise to cause the fullness.

My mel was in left groin, with recurrance in additional nodes resulting in radical groin dissection.  I did have regular cycles on interferon, before and after surgeries, normal till recently.

My follow up onc appt is Monday which I will, of course, bring this up.  Just throwing this out there if anyone has thoughts, recommendations, questions I should ask...I (think) he will be ordering a PET b/c we talked about doing one every 6 mths for the first year.

Guess I just might be letting my thoughts get the best of me again...

Laurie

Do not fear tomorrow, God is already there.

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aynw's picture
Replies 13
Last reply 6/17/2011 - 8:26am

Hello.  I live in Manitoba, Canada and was recently diagnosed as Stage IIIA.  The oncologist advised that in my province the options are to do the 1 year of interferon alfa 2b, or observation. There are no other treatments or clinical trials that I qualify for here. I know there is controversy regarding efficacy of i/f - I am wondering if any of you could provide advice / feedback based on your own experiences.  I am 41 with 2 daughters at home and want to treat this as aggressively as possible...so interferon, observation or is there something else out there that is considered more effective?

I know in the end it is a personal decision my husband and I will have to make, but your feedback will be helpful. 

Take care,

Ayn  

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Hereiam's picture
Replies 1
Last reply 6/2/2011 - 4:59am
Replies by: James from Sydney

Virotherapy seems to be developing in melanoma treatment. Somewhere it' s already used officially. Do you know something more?

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Hi, the hits just keep coming. Had 2 recent biopsies. One was just fibrosis. The second was melanoma in situ. Waiting for a wider excision. My sister called yesterday to say her breast bx was positive for cancer. Praying it's early, but already not thrilled w what she read me from path report. Now today found lump at bottom of LND scar. This seems near to area where PET scan had concerns, but was only 3 weeks post op (now 3 months out). Have to wait until next tues to see oncological surgeon. Phoned oncologist they are moving up my pet scan. Hoping it's not mel again so soon. More worried about sister than me. This sucks!

Just venting,
Julie in Las Vegas

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/1/2011 - 9:04pm
Replies by: Vermont_Donna

Hello everyone!  I am stage 4, began IPI on May 2nd and had my 2nd on May 24th.  I have been finding bruises with lumps under them, first started showing up after my first infusion and then found more after my 2nd infusion, my doctor told me it is too early to start seeing reactions to the IPI, but I believe that is what I am seeing....I find it hard to believe that just out of the blue these start pooping up....I have read other topics etc.  What have the rest of you experienced, have you experienced this also and how soon did you find these appearing if so.....

When I called at first the PA told me this is common and they will go away...so is this the melanoma being found by my immune system and surrounding it, preparing to destroy?  I would sure like to hear from the rest of you on IPI.  I'm not freaking out, but would be more reassured if others have had this happen also. 

Thanks for you time.........go IPI go!!

Get a skin check at least once a year by a dermatologist and stay out of the sun.

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