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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Eehgads's picture
Replies 4
Last reply 12/22/2011 - 8:40pm

She is tucked away in a really special place in my heart. A place only she and I shared. Life has gone on but it is not the same.  I guess it is never the same once you've known Melanoma.

I remember all my special friends that passed away during this time of the year. It is too painful to think aboutmost of the time but once in a while I allow myself to remember.

 I remember our last call,  I didn't realize that three days later her journey would come to an end.

I'd like to think she ise watching over us and laughing, with spaghetti coming out of her nose! (inside joke)

Michele

 

 

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BonnieLea's picture
Replies 6
Last reply 12/20/2011 - 10:14pm
Replies by: KyCyn, BonnieLea, jag, lhaley

Finally..........  I have  renal cell carcinoma.   NO METS from either Melanoma or Breast Cancer.  Just plain old RCC.  I will have a open partial nephrectomy on Jan 16th. 

 

What a relief to stop all this worry.  so more Bonnie parts will adorn the shelves only this time it be at a different hospital.  So it (kidley) won't be sitting side by side with boobs, and eyelid.  and various dysplastic goodies.  they will start living life elsewhere.   How weird that this is the 3rd totally unrelated cancer in me.  (cannot say little old me)  but old yep. 

well that be my news for now.

Love Bonnie Lea

Hang in There

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Shaggy 's picture
Replies 8
Last reply 12/19/2011 - 11:54am

Just seeing if any of my old mates are still here.....got plenty of news if you remember me....which i doubt many will.Been clear of MM for 16 years now

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BillMFl's picture
Replies 1
Last reply 12/5/2011 - 7:13pm
Replies by: Nad T

Great time with my neices and nephew and their beautiful little ones (7 total). I am "Uncle Bill" to all of them and heap big chief of the clan since my sister passed. Thanksgiving is my favorite holliday, getting together for all the right reasons, sharing food and stories with loved ones.

Eeghads hope you see this. Saw my ex brother in law at Thanksgiving. First time in 20 years since he and my sister divorced. He played for Wisconsin in the "63 Rose Bowl when we were all students there. See that Wisconsin is going back again, two years in a row. Geeze its been a long long time since I stood in Camp Randall Stadium and sang "Varsity".  Have a great time and "U Rah Rah Wisconsin, hail to thee we sing"   Dam I wish I could go back in time and be there again. The 60's were wild and crazy. Now I'm an old fart with memories!

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raysa's picture
Replies 5
Last reply 12/9/2011 - 12:13am

Just checking in to say Hi to all my old friends.  I am doing well.  It was 10 years last May that my husband died from Melanoma.  Wait, did I say yesterday?  Feels like that so many days.  Still feels so fresh and so raw.  And  yet it is better.  My step is lighter.

The people of this board and also the Dark Side (except when it got really bad) helped me so much.  There were so many laughs.  So many fun times.

Just spent the day with Yawn.  He is still the same.  He sends his love.

Raysa

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Bonnie Lea's picture
Replies 5
Last reply 12/16/2011 - 4:03am
Replies by: Kim K, Bonnie Lea, Nad T, jag, Yawn

Dear Guys and Guyettes. 

 

Well I survived yet another bx.  this one HURT like the dickens.  I was frozen, (only skin)  but when he plunged what ever into my kidney, man I could not even yell our moan and groan as I was in middle of   "HOLD YOUR BREATH" routine.  But I am sure I whimpered enuff to let them know I was not a happy Bonnie Lea.

He tried a diff sort of way.  Did the pre contrast scan, got where he would see the kidney and lump clear and came back, told me and asked that I maintain that same amount of breath in lungs, as the kidney bobbed up to where he could get perfect view.  So that thought kept my mind focused and it worked, he was very pleased. 

tried the ultra sound prior to this as too many CT scans for me of late..... but it did not show very clear enuff for him to bx the spot.

 

Home after 5 hours  and stay in bed the rest of the time making up for 24 hours.  Results will (should) be in at my urologists office by next Friday, which amazes me, as first time was 21 days????   (think I slipped through cracks in his office)  but the doctor yesterday said DEF it be in both the urologists office and my little cute lady oncologist (at same hospital)

 

thats all for now.  Bright sunny day here,  kids have gone on a long day trip to visit their grandmother.   its a four hour drive there and 4 hours back. But she is 93 and felt she was tooo unhappy being here with us  (dark, cold she always said)  well same thing where she is with dear dear family friends who adore her.  It releived tons of stress from me.  Hard to look after a elderly disabled person  (deaf since birth, and now almost blind)  who refuses to acknowledge I am me, and a grown up.  ETC ETC

 

so I am well as can be expected.  Let you all know when I know.  Thanks for all your good wishes...continue to pray or what ever that this is NOT a met.

Just Keep on Hanging In

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BonnieLea's picture
Replies 4
Last reply 11/30/2011 - 2:20pm
Replies by: Nad T, BonnieLea, yoop, jag

Well-a-day

 

I have the repeat biopsy this friday on la kidley!  third time's a charm I was told.  First time, machine broken for contrast, second time the biopsy was not conclusive and still suspicious now again.  Maybe by the time they finish with me, they will have so many core samples the whole thing will be more holes than a swiss cheese.

 

Well, one never knows.

Hang in There

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Pattie's picture
Replies 2
Last reply 11/29/2011 - 7:04am
Replies by: FormerCaregiver, Janner

My 19 year old son, Michael, has Stage 4 M1c Melanoma as of his latest PET/CT Scan on 11/7/11, which showed that 2 tumors have grown in his spleen and 2 possible minute tumors near the original site of his right neck. He is currently a second year student at Cal Poly Pomona.

History: He was originally diagnosed with Melanoma in March 2011. Michael had two surgeries in April & June 2011, of which 15 lymph nodes had melanoma tumors up to 1.1 cm of the 65 lymph nodes removed, from his right neck. At this point, he had Stage 3C Melanoma. Michael started Sylatron, which is Pegylated Interferon, on July 24, 2011, which was approved by the FDA in March 2011. Michael choose not to do radiation. He completed 16 weeks of the Sylatron until it was determined that the Sylatron was not working and the Melanoma had metastasized. Michael’s oncologist, Dr. Gregory Daniels of UCSD Cancer Center, then had Michael’s tumor tested for the BRAF Gene Mutation Analysis (negative) and blood tested for the Human Leukocyte Antigen (HLA)-A2-peptide complexes (positive).

Since the HLA – A2 came back positive, it is a possibility that Michael could be put on one of the clinical trials for Adoptive T cell therapy. (Adoptive T cell therapy  - ACT - consists of isolating tumor reactive lymphocytes from a patient, growing and activating them in the laboratory, and infusing them back into the autologous patient). He is going to the National Cancer Institute to meet with them to determine his next treatment option after he finishes this quarter in 2 weeks. Michael will not return to school this next quarter knowing it is imperative to start a new treatment as soon as possible.

Up until now, he has modified his diet to consuming more whole foods but not to the extent of my liking. When he was home for the summer, we were able to keep an eye on his diet. But since he has been away at school, I know he has not stuck with the plan. 

I would like him to start an alkaline diet plan with daily juicing, additional natural supplements and incorporating integrative treatments such as mindfulness classes and acupuncture into his routine. We have tried to eliminate as many toxins from his daily life by using safer body and cleaning products. I feel that he may have additional exposure to toxins when he surfs. Michael has been surfing since he was 10 years old, and it is just as much a mediation activity as it is exercise for him. Therefore, I cannot take that away from him. So, any pointers to help eliminate/reduce toxins would be appreciated.

Thank you for taking the time to read Michael’s Melanoma story. I would deeply appreciate if you could let us know what your Melanoma Plan has been. By reading what others have done to make their Melanoma Plan successful will only confirm in Michael’s mind that he should make those same changes. Take care.

Pattie

Melanoma Mom

"Life's Perfect Moments Are Now" 

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Anonymous's picture
Replies 1
Last reply 11/22/2011 - 10:54am
Replies by: dian in spokane

http://www.nytimes.com/2011/11/22/health/cancer-by-any-other-name-would-not-be-as-terrifying.html?_r=1&emc=tnt&tntemail1=y#

This article talks about how powerful the word cancer is and how it needs to be removed from the diagnosis of certain cell changes that are not invasive. Less cancer would be a good thing any way you can get it, I guess  [except when it comes to funding!).  In this case it refers to a Prostate tumor they want to rename “adenosis” instead of cancer and  Stage 0 "breast cancer" , also known as ductal carcinoma in situ, or D.C.I.S.  The National Institutes of Health want to rename D.C.I.S. "high grade dysplasia".  They've already renamed Stage 0 of the cervix. It had been called cervical carcinoma in situ- now it's cervical intraepithelial neoplasia,  taking away the cancer connotation. Despite the wishes of doctors who are involved in the research at the NIH and the advice they've given to the two in question here have not been renamed.

Another line from the article--"The word “cancer” is so powerful it overwhelms any conversation about what Stage 0 cancer actually is..." would this apply to Melanoma Insitu or is this already in effect with the diagnosis of Severe Dysplasia ?

 

 

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Meagan's_mom_Claire's picture
Replies 10
Last reply 8/3/2013 - 6:21pm

Have been trying to email her and haven't heard back. If someone can let her know that Claire and Meagan are looking for her, my email address is keepingbusy73@yahoo.com
Thanks

Live life as normal as possible

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Anonymous's picture
Replies 2
Last reply 11/25/2011 - 3:29pm
Replies by: Anonymous, jag

 

the one with the cheerleader?  Any thoughts?

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BarbieGirl's picture
Replies 12
Last reply 12/17/2011 - 12:31pm

This is the first year I haven't posted about Glenda's death (Oct. 30, 2006) or Lesley's (Nov. 9, 2004) or sooo many more-----I just couldn't put myself thru it this year.  Doesn't mean I've forgotten them---that'll NEVER happen---just that I didn't have the energy or heart to post a happy memorial tribute.  I'm PISSED and ANGRY they were taken from us--ALL the warriors we've lost.

I was messing around with Windows Movie Maker (so I can put my song "Wings of Hope" on youtube) the other day----can't put the song up without pictures or video, so I started posting pix for a slideshow of "Faces of Melanoma"----those we've lost over the last 11 years I've been here.  I couldn't finish it---the more angel warriors I thought of, the more I cried, then I'd think of a dozen more.   I'd post their pix, cry some more, then think of 3 dozen more.  I just finally had to quit, went to bed and cried myself to sleep.

I remember like it was yesterday when Joe Tuso died.  I'd only been on the boards a short while, and when melanoma took his life, I cried like a baby for DAYS!!  It was difficult to explain to my hubby, kids, mom, friends, etc. why I was crying over somebody I'd never met!  Hell, it was difficult to explain to myself!  Joe was always sooo upbeat when he posted, and then when his daughters posted he had passed, and HOW he passed (they were singing hymns in his room and he was happy and surrounded by family!), I just totally lost it.  I've talked to his daughters a few times and let them know how much their dad meant to me.  And Joe was just the first of WAY TOO MANY that I came to love and care about, many who I eventually met in person.  I've always said if there's anything that is good about melanoma, it's the people I've been blessed enough to meet in real life and online--everybody (well, all but a couple) feels like family, and it hurts so much when a family member is lost!

I read DT's reply to Mr. SOPOS Bill who's in Hawaii.  They're brothers, whether they like it or not, and I DO believe they love it!  THAT made me cry!

I think a lot of it has to do with my upcoming scans (which hopefully will show I'm 11 years NED).  The longer I go NED, the more "nervous" I get!!  Doesn't make any sense, really, other than I've known many here who went 14-15 years, and the beast came back with a vengeance.  I've explained this to my onc, and she knows what I'm feeling---like I've been a lucky ducky but that "that" day WILL come when the scans aren't good.  Isn't that crazy?  Shouldn't I be jumping up and down for joy that I've made 11 years, when my stats said I only had a 60% chance of surviving 5???   Don't get me wrong, I'm REALLY HAPPY and filled with thanksgiving that I'm still here.  Just feels like the longer I go, the 'closer' I am to recurrence!  I KNOW, I KNOW....my mind shouldn't go there, especially since I'm "only" Stage 2-B.  (Worse stats than Stage 3-A.)

It's prolly all the stress of the girls in school and my mom in rehab (she fell and broke her arm and leg a few weeks ago).  And worrying about my kids and missing seeing them---Haven't seen them or Rylee since March and don't know when I'll see them next.  And I'm just plain tired.  Tired of all the responsibilities----paying my bills AND mom's---maintaining 2 houses (in different states), dealing with insurance and medicare and mom's house getting broken into, her cat having to be put down, her health in general, my hubby still working his butt off MORE than 40 hours a week---I want him to retire!!!.  I'm dreading the holidays and they are my FAVORITE TIME OF THE YEAR!!  I haven't bought the first Christmas gift, nor the first thing to cook on Thanksgiving.  I don't WANT to cook---I'm tired of cooking or figuring out what we're gonna eat everyday, I'm tired of all the school crap (cross-country, choir, grades (they're doing good!), homework, fund-raisers, book fairs, plays, pictures, teacher conferences, PTA----I've done all this already!!  I'm actually, believe it or not, tired of DOLLS!!!  Wish I hadn't already paid for my oldest grandgirlie and me to go to convention next year--I've totally lost interest.  Village Photos just went belly-up, and I've lost at least 1,000 pix I had stored there.  I'm pissed I didn't back 'em up--just never dreamed they'd go out of business.  I'm too tired to do auctions and get rid of 75% of the dolls I don't want anymore.  I too tired to have a rummage sale, but I need room and $$$!  I'm too tired to meet my sisters and pack up mom's house and put things in storage.  I'm tired of dealing with 6 people going to docs (I've spent 2 days making appointments for everybody.)  2 of the girls need braces; 1 needs to see an orthopedic; one needs to see an ophthalmologist; 3 of us need to see optometrist; 1 needs to see a cardiologist, then my scans, onc visit, annual gyn and mammo, mom's visits to her orthopedic, gastro, kidney, heart and primary docs...... SHIT!!  I'm gonna be running someone somewhere every day from now 'til January!  I'm tired of taking meds every day just to make it thru the day.  I'm tired of taking antidepressants that (obviously!!) aren't working anymore.  I'm tired of the damn phone ringing, and my cat meowing, and fooling with the girls' turtles ('cause they WON'T).   I've become attached to Rocky and CC---who'da ever thunk a stinkin' turtle had a personality???

Well, I've had my pity party and I don't feel any better.  Gonna take my meds and hit the bed.  Then start all this crap over again in the morning.  Yippee.     

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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pati's picture
Replies 1
Last reply 11/17/2011 - 9:36am
Replies by: Janner

Dear Melanoma Patients, Advocates, Carers, 

I am a stage IV melanoma patient residing in Belgium. I am the president and founder of the melanoma independent community advisory board (M-ICAB). Our purpose is to develop innovative approaches and solutions for melanoma patients that would not be achievable by single actors alone, based on a true and meaningful partnership with researchers/clinicians, the pharmaceutical/diagnostic companies, the EU and regulatory bodies.

Given the recent approval by FDA and EMA of innovative therapies for advanced melanoma we are conducting a short survey (6 question maximum 7 minutes) to get a better understanding of the condition of access to these new treatments across Europe. This information is essential for EU melanoma patient advocates whom are fighting for their right to a better quality of life.  To facilitate the completion of the survey you can go to the following link:https://www.surveymonkey.com/s/Z7J22F7






We would greatly appreciate your time and partnership if you have EU patients accessing your boards,

Best

Patricia Garcia-Prieto

President and founder

Melanoma Independent Community Advisory Board


http://www.m-icab.org

Volunteer Patient Advocate

European Cancer Patient Coalition

contact: patricia.garcia@ecpc-online.org

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jag's picture
Replies 4
Last reply 11/19/2011 - 3:02am

Bonnie Lea and Jerry from CapeCod?

Hope you guys are ok.

J.

Insert Generic Inspirational Motto Here

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I had the pleasure of meeting and eating with Jerry (JerryfromFauq) and Sue and some of their family! Good food, great company and conversation. Made my day!

Cynthia C

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