Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

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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Tracy Chicago's picture
Replies 4
Last reply 8/15/2012 - 12:52pm

My friend Pete lost his best friend Larry Poplawski to melanoma 10 years ago and recently hosted his 9thannual golf outing in memory of Larry to benefit the Melanoma Research Foundation.  As a melanoma survivor, I have been honored to help Pete with his outing for the past three years and would like to add on to his fundraiser.

From August 1stthrough August 10thI am hosting an online fundraiser to benefit the Melanoma Research Foundation by donating all of my commission to MRF from my Thirty-One Gifts independent consultant sales. This means that 25% of the proceeds from any order placed with my Thirty-One account will be donated to MRF.  If you would like to place an order please go to www.mythirtyone.com/tracywelgeand select “Place an Order.”  Then choose the 9th Annual Lawrence Poplawski Memorial Golf Outing Event.

Please share this with your friends, family, coworkers, teachers, etc. Sometimes people are more willing to donate to a cause if they get something in return (like maybe a cute tote)!

Thirty-One Gifts is a direct sales company that sells totes, bags and organizational products that can be personalized. Please note that Thirty-One is not donating to MRF. All donations will come from my commissions. If you have any questions, please post them here or email me:  welgetracy(at)gmail.com. 

Thank you,

Tracy Welge

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BillMFl's picture
Replies 2
Last reply 8/11/2012 - 9:16pm
Replies by: jag, BonnieLea

ya so nothing new. up here in maine doing the boat thing. lost the end of my nose earlier this year but they grew a new one for me. pretty as ever. no caps cause i m lazeee. hi to anybody that cares. hi to the rest too. hang in there jag. hugs to marie m. i dont visit the boards anymore. turned 70 this year and want to keep my head clear and enjoy life for now. pat is doing fine.

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King's picture
Replies 4
Last reply 8/10/2012 - 4:49pm
Replies by: Janner, BonnieLea, King

Hi,

I don't know if it's me and my memory (very likely) but I can't remember how to find someone's email address.  I thought with the prior format, one could click on their highlighted post name and the email address would appear.  Now that seems to take me to their profile.

I've had an email exchange (I shared my email address on a post) with a member.  I must have deleted the email and I guess I didn't put her email address in my contacts.  I would like to contact her with more information.

Any help would be appreciated.  And BTW, in case you see this, her posting name is KMT2003 (Kelly).

 

Stay Strong
King/Kathie

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jag's picture
Replies 9
Last reply 8/6/2012 - 10:49am
Replies by: BonnieLea, jag, Kimmer

Have been reading this blog-quite inspirational, picked it up on my google alert for a new brain tumor treatments.  Hers is a personalized brain tumor vaccine that she is considering. 

http://jessicaoldwyn.blogspot.com/

it is about a woman who was diagnosed with an astrocytoma at the age of 29.  She is a former runner and running again too..

I did a 2 mile round trip to Jedd's future elementary school.  Couldn't really run the whole thing.  I jogged for 2 telephone poles, then walked one, then jogged 2 more etc.  Endorphinsdo feel good.  Broke a nice sweat in the hot humid weather here.  Needed to get out after a full day of taking care of little Jedd.  Merry got to go out on calls for the business. I sat home in the "shoe box on the rocks" as Merry's first cousin from Australia named it after visiting us.  Fed Jedd every 2 hours, in between paid bills, wrote records, and tried not to fall asleep.  Needed to get out at the end of the day.  The run kind of woke me up a bit, so now I am able to be more productive at the end of the day.  Now my abdomen is sore from my first lung surgery where they tacked it with staples, in front.  

Watching the Tour de France, this time an Englishman seems to be in the lead (for now).

Will have to see if I can work up to 26.2 miles. 

Insert Generic Inspirational Motto Here

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Rdmstm's picture
Replies 5
Last reply 8/3/2012 - 1:06am
Replies by: porton, wsx111, jag, KyCyn

I just received news that I have melanoma in situ and I'm very frightened and feel like I'm in a very bad nightmare. I have meetings next week with 2 differen surgeons to advise me treatment. I'm terrified that they are going to provide me with a bad prognosis. This is what my path report said:

melanoma in-situ, early lesion
 (note: the lesion extends to lateral margins)

Clinical Data History:
shave w/ margins, 0.2 x 0.3 new 2 tone macule, R/O A typical nevus

Microscopic Description
Melanocytes, some of which have hyperchromatic nuclei, are arranged as solitary units and in nests with the epidermis.  There is poor circumscription and in foci melanocytes arranged as solitary units predominate over nests.

Any words of wisdom or questions I should ask my doctor would be greatly appreciated! Thank you

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MarieM's picture
Replies 0

John, I need to ask you something but I don't have your email. Please email me at Mariestime@aol.com.

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Rdmstm's picture
Replies 1
Last reply 7/31/2012 - 6:27pm
Replies by: Tracy Chicago

With my diagnosis of melanoma I've recently been thinking about purchasing a self tanning creme, and possibly splurging on a professional spray tan. I mentioned this to a friend, and she thought these cremes and spray tans could contain harmful chemicals?? Does anyone have information about the advers effects of these services?

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BonnieLea's picture
Replies 2
Last reply 7/7/2012 - 8:51pm
Replies by: BonnieLea, CarolA

Hmmmm. Well some of you may know I (we)are AWACBE. My incision is still oozing but not bad. I am hoping to get the staples out tomorrow. But who knows now. The kidney seems ok. To those who thot I lost a whole kidney nope just a portion. (whahooo clear margins). Not mel simply RCC as if that is simple

Now boob onc wants further testing due to 3 or 4 unrelated cancers. I know mekong and LMM are related but boob and kidney??? So gots to ave ultra sound of chest wall (some lumps). Then follow up during first week of camping. Geeze a 4 hour drive to boob centre and 4 hours back. Since hubs can't drive for six months DD has to. God how I hate this dependency. Poop she has only been married for a few months yet here she is driving mum and dad all over the region. I haste this.

I will try to drive the truck. ( F 150). Never driven one beforehand fact I have not driven anything since first brain surgery (2007). Wish any one of you guys were here. But you is alllllll from USA. Tsk Tsk for me hahaha. Bob has apps now and of course alllllll my various hobbitall apps. Do I sound selfish ??? I hope not

Love always Bonnie

Hang in There

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emma76's picture
Replies 1
Last reply 6/30/2012 - 11:05am
Replies by: Janner

I had a bx returned as "spindle cell melanoma arising in atypical nevus" with "indeterminate malignant potential" in June 2001.  The area was removed but not known if it was fully excised (long story) and I was advised by surgeon that because of the area and other factors it would be a false peace of mind to perform more in depth excision.  I have not thought about this for some time now, but I have had MOHS to remove a BCC (2009) and have full-skin checks every 3-6 months at the discretion of my dermatologist.  This has come back to the front of my mind as I believe I have a recurrence of BCC (next check up in July), I have family hx of melanoma (father and paternal grandmother), and I have since had pain and other issues in the region the original bx was taken as well as other organ systems in the vicinity.  I am now also facing breast lump and wonder if it could be related.  I have not been able to have health insurance for several years now and do not have a PC provider that follows me, so I just don't know if I am connecting unrelated dots or should have reason to worry.

Here are my questions:

1) is it appropriate for me to seek information & stories from those on this site?

2) Shouldn't this have caused more noticable symptoms if it were related?

3) Should I have had bloodwork/is there a blood test that could help exclude this earlier disease process?

4) Can BC and melanoma be related?

I have also had 2 other excisional bx and many punch bx over the years.

I do hope I am not asking inappropriate questions and appreciate any feedback or suggestions to guide me in seeking the right care.  Thank you all very much : )

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On Sunday, August 12th, lace up your sneakers and join the Melanoma Foundation of New England at the starting line for the 2012 New Balance Falmouth Road Race. You can help spread awareness and educate others in the fight against melanoma.

Runners have been raising funds and awareness for the Melanoma Foundation of New England since 2004. Running for Cover, the Foundation's running team, has been running Falmouth for the past four years. We aim to raise more than $15,000 this year! Runner will be required to raise a minimum of $1,000 to help us reach our goal.

If you, or someone you know, is interested in joining Running for Cover, please visit our website, apply online, or email jshea@mfne.org.

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ringo412's picture
Replies 1
Last reply 6/20/2012 - 12:12am
Replies by: Janner

hi everyone,i am the spouse of a stage 3b melanoma patient,in the past 4 months my husband has lost 32 lbs. will the oncologist continue interferon or will they stop,just curious if anyone has had the same problem? thank you

 

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MarieM's picture
Replies 1
Last reply 6/19/2012 - 6:50pm
Replies by: DebbieH

I haven't been able to post here...just trying....

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MarieM's picture
Replies 3
Last reply 6/16/2012 - 9:58pm
Replies by: jag, BonnieLea, Janner

I haven't been able to post here...just trying....

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BonnieLea's picture
Replies 3
Last reply 6/15/2012 - 10:40am
Replies by: KyCyn, Kimmer, jag

well, On June 18th I head for shunt revision, this time with a programmable one.  (no magnets for me, means no MRI's anymore) woe betide.  The other more important news is my hubby is doing swell.

 

He had a heart attack on May 16th or rather they call it Ventricular Tachacardia.  Was in hobbithall for 12 days and ended up having a pacemaker/debibulator installed  (no magnets for him either)

 

Our kiddies have been great, helping with driving as Bob is not allowed to drive until check up on the 18th.  Ya ya same day as my brain surgery.  Oh well. But it all is good and I have been quite firm in 'making him sit, stay and be quiet'  His heart rate went up to 282 thereabouts. and much to his shock....he was zapped before they could sedate him. Even cutting off his clothes (one of which was his bestus Grundy Lake fleece zipped sweat.  He was at work, up on the travel lift, (he works in a marina)  he felt dizzy (no pain) came down, rested went back up came down, then one of the customers was wondering why Bob was not yelling at his staff as they were trying to move a big house boat and well, lets say Bob barks.  This customer was a paramedic and immed called 911.

He came over to get me, telling me  "Bonnie, I really need you to come with me"  now at my age......havent heard that one in eons. hahah  I did not know this man...but he saw my face, and immed said  Oh my name is so and so, I am a friend of Bob's and he has been taken to hospital.  You must come now.

MAN WHAT A SHOCK  but I quickly grabbed stuff to wear, (important things like my WINTER COAT? duh......  and away we went.  Had managed to call DD who in turn called her bro, and they all met us at the emmerg.

 

It has def been a May month I do not wish to repeat.   This is why I have been silent.   We still hope to go off into the woods and fight bears.  Me with bald head, and Bob with strange metal thing in his chest.  (now he has a larger boob)  hahah

 

Love Bonnie

Hang in There

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Replies by: Nad T, jag, BonnieLea

They volunteer to be warriors.

http://youtu.be/hkGzqpGx1KU

<iframe width="420" height="315" src="http://www.youtube.com/embed/hkGzqpGx1KU" frameborder="0" allowfullscreen></iframe>

Insert Generic Inspirational Motto Here

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