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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WalterA's picture
Replies 3
Last reply 2/16/2011 - 11:11pm

On Friday morning I'm going to have radiofrequency ablation to attack the lesion that was picked up on my scans Monday. The PET scan today (Wednesday) didn't pick up anything else, so my surgeon/oncologist and the doctor who actually will do the procedure are confident that we're on the right track.

Yep, Linda, this is Walter who was from Charleston but now is in Lexington. I'm still going to Charleston for my treatment.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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Wetterhorn's picture
Replies 8
Last reply 2/17/2011 - 10:13am

Bright and early. 7 AM early as a matter of fact, up at Sloan Kettering.  5:45 AM arrival time. At least I won't have to wait around (hopefully) as I am first up. This will be my 5th surgery in 3.5 years. This time on my small intestine. Not looking forward to it, but hopefully I can say NED again tomorrow late morning.  Wish me luck.

Wetterhorn

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ErinMcH's picture
Replies 4
Last reply 2/22/2011 - 11:51am
Replies by: ErinMcH, AS123

Hi!   My name is Erin..... short story, have had one Stage 1 and two in situ's over the past 14 yrs.   I'm now a mom of 2 kids, a 4 y/o and a 15 mo old, and living in Arizona.  (Way back yonder when I was very active on mpip, I was living in Seattle).    I went to pick my 4 y/o daughter up from preschool yesterday, and she did not have her pricey Coolio hat on.....realized she was sunburned from scalp to arms.   Her school KNOWS to apply sunscreen after lunch all over her, and to wear her hat.   I was so incredibly ticked off when I came home and recognized her scalp's burn.   I went straight away to her headmaster and her 2 teachers this morning, who gave me the "oh, I couldn't find her hat (bull), and forgot to put on the sunscreen (when there's a note on the door saying to apply sunscreen....WTF.)  "You want her to wear the hat even if it's 60?"  HE-LLO.   

So I know this note is totally random and doesn't have anything to do with me (my last in situ was 5 yrs ago; I still get mole mapped yearly and see my melanoma doc here twice a year.)   I was VERY lucky I knew/know what cancerous moles looked like, and that I had the first one removed when I did.  (That was a freak show....senior in college in Cleveland (hence, Allison Vidimos/CCF as my doc; still consider her my doc), had mono in the spring, was supposed to go to Ireland for spring break.....instead, went home, begged my mom to drag me to the derm to have the mole removed (even though I was in bed basically immobile.)   Voila- stage 1.   

Now that I have my own kids, I'm a freak about sun protection.   My friends (well, some) look @ me that my child(ren) wear long sleeved/legged swimwear everywhere instead of cutsie bikinis.   Grrr. 

Needed a real outlet to vent..... I'm totally type A when it comes to melanoma.  (I sent my dads friend to a derm 7 or 8 yrs ago to look @ a mole.... indeed, he had stage 2 melanoma.  Still alive.) 

Off my random soapbox......

wanted to say Hi....let's see if my daughter will be wearing her hat and has had sunscreen re-applied when I pick her up soon from school.   

-Erin

The butterfly counts not months but moments, and has time enough~ Tagore

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Just a reminder that UNC-Chapel Hill School of Medicine is hosting a Melanoma Patient Day next Wednesday, Feb. 23, 2011.  The event will go from 12:30-4:30pm and will be held in the William and Ida Friday Center for Continuing Education.  Use the following link to see the agenda, brochure, or to register:

http://www.melanoma.org/get-involved/unc-chapel-hill-melanoma-patient-day 

Contact Shelby Moneer at smoneer@melanoma.org or call (800) 673-1290 for additional information or to register. 

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Carmon in NM's picture
Replies 5
Last reply 2/16/2011 - 8:45pm

I just got through seeing my onc after having a full body CT scan and brain MRI this morning and that pesky tumor on my adrenal gland has shrunk some more! It started out at 2.3 cm and now after four infusions it is down to 0.72 cm! No new mets in my brain or anywhere else! There is a spot on my lung and a couple of anomalies in my brain that they have been watching but nothing that has changed or shows any activity.

I asked if they could tell me how the others are doing on this drug trial and the protocol nurse said that everyone has responded just as well and that they are very excited about it. I'm sitting and waiting to go in for my 5 hour drug infusion so I don't have my notes with me but I'll post the number of this drug trial here tonight or tomorrow in case anyone wants to look into it. It's a combination of carboplatin, carbotaxil and temodar.

We be doing a happy dance here in New Mexico! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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himynameiskevin's picture
Replies 4
Last reply 2/16/2011 - 7:29pm

It's been a month since I last posted an update and I've got a few hours until my scans, so I figured I'd say hello from the library here at the NIH. Not much has changed since my last post, I've been working a lot, going on bike rides a few times a week, and I actually went skydiving for the first time a couple weeks ago. It was pretty fun. And that's about it. As far as the medical stuff goes, I'm back here for my 2nd monthly-scans; CT scans in a couple hours and an MRI tonight. I'll talk to the doctors tomorrow and see what the have to say. Hopefully the scans show something that results in good news. If so, I'll be sure post it here. Well, I hope you're all doing good and staying postive. I'll talk to you soon.

-Kevin

 

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With reference to the recent discussion? on alternative or what ever....I am asking Jake what he did and where did he go for treatment from when he was diagnosed to when he found us here?  I am trying to see did you do alternative stuff and if so what was it.  As I see you advanced from I think stage one to stage 3 and it is not clear to me other than your stage 3 was a node.  so from when you first were dx'd in I think 2007 till say fall of 2010 what treatment did you go on?

How did you know that your node was one of the evil ones.   I have the odd one that swells up but just waiting for it to shrink and it does, always does give me a panic,  people here are great, in helping me gimp along and I adhere to their advice.  right from when I lost my eyelid, and still all the on going things.  So I wonder if alternative and I still do not know what this is.  would diet alone have saved my eyelid?  would diet alone not made me (only one in my famiy) not lose both breasts to breast cancer (not melanoma related, but I swear my body knows how to do nasty things now)  I never sunbathed, I never went to tanning beds, heck I shunned the sun  yet I still developed a 4mm thick mel on the back of my neck, thank God I am ok.  No SNB was done, as that was not available here at that time. 

 

So what exactly in your words made simple for me, is alternative.  certainly not accupuncture, accupressure, gobbling up green veggies 24/7  I eat healthy yes,I limit my sugar and salt, alcohol in moderation, I have developed osteoporosis, I have NPH and from that I now enjoy having a shunt installed in my brain with a tube running down my neck to my tummy cauysing me to feel and look  HUGE and I imagine CSF dripping into my tummy making me even fatter I bet.

Just a a thought.   The people here who responded severly have been through hell and are attempting to crawl back, something I think you nor I have not even had to think about. 

Shun me if you wish.....right now, I am too darn tired.  Yes I take my supplements, I take my vit.  I take my meds to stop all weirdo things from happening, and I am always aware of melanoma lurking about maybe never to show its ugly face, again, but maybe it will.  I see so many doctors from eye cancer doctors, to eyelid (hence forth known to everyone here as  EARLID) to boobless doctors, to lady parts doctors, to chiropractors, to Massasage therapsists, even to myu dear little pedicure girl.

 

Bonnie Lea

Just Keep on Hanging In

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Emrina's picture
Replies 2
Last reply 2/16/2011 - 9:56am
Replies by: Emrina, lhaley

Hallo to everybody from South Africa.  My husband has been diagnosed with stage IV Metastatic Melanoma.  Melanoma has spread to his lymph nodes and both lungs.  We were given 3 options.  No treatment, DTIC or the Clinical Trail.  Went for a 2nd opinion, prognosis the same.  He is currently taking part in the OncoVex GM-SCF trail and has received 2 injections.  Still 22 more to go.  This clinical trail Phase III ended 31 January 2011.  Is there anybody out there that has taken part in this trail or in currently still taking part.  Would love to hear from you! 

Regards

Emrina

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tlynn's picture
Replies 11
Last reply 2/17/2011 - 12:40pm

so im coming up on my 2 year mark, i feel like nothing has been done... i have had 4 surgries and am constantly back at the doctor. On top of all that im a college student with no support system around me.... i have been looking for a chat site and stumbled upon this one by chance. My next apt. is on Thursday and im freaking out.. Any advice?

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lhaley's picture
Replies 15
Last reply 2/20/2011 - 6:59am

I never thought I would be happy to hear those words, aren't we all looking for clear scans! But I'm thrilled.  One nodule in lung is still 7 mm and the other is 4.5 mm.  No change from last scan (for smaller nodule it's been at least 2 scans).  In the past I've had PET/CT's, this time they did the PET and also a diagnostic ct of the chest, abdomen and pelvic area.  He feels they have more of a baseline now to go on.  Mel specialist says that while last scan he was worried he's not thinking the same thing now since all else is clear and this hasn't changed. No light up at all from it on the PET! Next scan in 3 months!

Meanwhile he was very concerned when he learned that my breast has been pink.  Called in the surgeon that had done my surgery several months ago.  They couldn't feel anything but he talked about always being on the look out for breast cancer. WHAT!!  So, they have ordered a mammagram for the right breast and told me that I have to somehow get through the bilateral mri.  While they don't think there is a problem I can't ignore this.  But for the night I'm going to just sit here smuggly knowing that it's Linda 5, melanoma 0!!

They also checked the liver numbers again, don't have those results yet.   Long day. Left at 7am and walked in the door at 8pm.

Linda

Who knows if I'm NED or not but been stage IV since 06 and doing great!!

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My husband is stage 4 recurrent melanoma.  We tried IL2 but he has additional sites since.  He is BRAF negative and currently has mets on skin and pancreas.  Our doctor recommended surgery but now says they couldn't get to the pancreas nodules easily and isn't confident surgery could remove everything.  We did the Ipi clinical trial before the recurrence, but our doctor now suggests going on Ipi compassionate.  Does anyone have other suggestions?  Scans coming up this week and next and we are supposed to start the Ipi next Wednesday.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Hi, thanks for many of you answering my email for a systemic treatment for my husband Derek for stgae 4 - what I was really asking but using the wrong word was for an adjuvant treatment (?) - something to do after his lung surgery to prevent another recurrance.  Anyway, I guess I was jumping the gun because although scan results are not in yet, I think we might have just found another local recurrance, this one in his original scar.

 

It really doesn't end, does it.

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vivian's picture
Replies 3
Last reply 2/16/2011 - 2:52pm
Replies by: skysar, lhaley, Suzan AB

Hey Linda,

I am thinking of you today as you have your scans and praying everything is perfect!

Hugs,

Vivian

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Carmon in NM's picture
Replies 1
Last reply 2/15/2011 - 9:51am
Replies by: Suzan AB

A friend is driving me to Albuquerque in the wee hours tomorrow for a full body CT and brain MRI to be followed by my 5th chemo infusion. It's going to be a VERY long day with nearly three hours driving each way and five hours for the infusion. We're hoping so much that the good news will continue with no new mets and the one on my adrenal gland continuing to shrink. Fortunately I'll get the scan results tomorrow too so no long wait and wonder.

I hate that I'm heading into this one really tired this time but the winter storms and deep snow just really took a lot out of me this last month so what can you do? At least I know I've only got one more infusion after this one, then surgery to remove the adrenal gland and whatever is left of that pesky tumor! So about a week of feeling really awful to get through and then I'll wake up craving a cheeseburger and fries and know I'm starting the bounce back!

Carmon in NM - stage 4 since 6/10 with brain mets and an adrenal met

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Well it was brought to my attention that Surgery is truly not an option. The doctor concluded that the nodule to be VAT'ed for biospy is too close to the center of the lung, very close to a major vien, so he ordered us back to UCSF for a needle biopsy. We have already received a call from UCSF to get that scheduled. So if it proves to be melanoma then we will discuss treatment options...I guess! 

I don't know how you old timers continue to march on, but I appreciate that you do and that you stay and post...thank you!

Holy Smokers...So I tried to get surgery, but it is a no go...I guess.  I need advise...

Suzan AB

Stage IV

 

Presently...One Day At A Time.

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