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.

Expand/ Collapse Topic
 
Replies By
View Topic
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...

Login or register to post replies.

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)

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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).

Login or register to post replies.

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/

Login or register to post replies.

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.

Login or register to post replies.

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  

Login or register to post replies.

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?

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

Hi - sorry this question is so silly.

My history- mm in-situ, family history, over 100 moles, 50+ removed (some mild, some moderate, some severe and some benign)

Had a bunch off recently and one was benign w/ a peripheral margin involved.

Derm underlined that part and wrote "observe"... I'm not one for observing, but I assume in this case, re-excising a benign mole would be extreme overkill?

I'm annoyed because it was totally excised (or so I thought) by a derm who specializes in surgery....

Wasn't sure if I should call dr to just check.

Thanks- best wishes to you all!!

Login or register to post replies.

Rocco's picture
Replies 16
Last reply 6/2/2011 - 3:52pm

You'd think I wouldn't, but I still do - get nervous that is prior to scans.  This Saturday bright and early I'll be warming up the CT and MRI scanners at DFCI.  Would welcome any and all good vibes, prayers and kind thoughts you'd care to send my way!  My husband who is a kidney cancer survivor just received an 'all clear' from his scans 2 weeks ago...so I  hope to follow suit.

-Rocco, Stage IV sinc 2005

Luke 1:37

Login or register to post replies.

I've created a community facebook page called "Melanoma Warriors-University of Colorado Cancer Center", in hopes of creating a support network among UCCC patients.  And maybe we could also collaborate on a fundraising project for "our" cancer center or a larger cause like MRF?  http://www.facebook.com/#!/pages/Melanoma-Warriors-University-of-Colorado-Cancer-Center/215693965130780

Rich

www.hotelmelanoma.blogspot.com

Login or register to post replies.

Pages