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
gtown's picture
Replies 12
Last reply 5/26/2011 - 10:22am

Hey what's up,

 I have been looking around for a cancer "hostile" diet but have found alot that had their own agendas or seemed less than reputable. I have had cursory discussions with my doctor but I figure you guys could point me to a website that would have the info I need. Also I'm waiting for the results of my SLN biopsy, the surgeon said the lymph nodes looked normal but he could not say what was happening at a cellular level. Has anyone had normal looking lymph nodes that turned out to be cancerous? Just curious. 

                                                                                               Gtown 

Login or register to post replies.

TracyLee's picture
Replies 7
Last reply 5/25/2011 - 7:42am

Hi y'all,

Well, I'm going to be the first Ipi patient at my cancer center, and probably in all of DE! I figure the upstate folks get sent to Philly or Baltimore. I go in on Friday at 9 a.m. in Lewes.

God has blessed me with the ability to drive 20 minutes to my treatment, instead of almost 3 hours away.

Any suggestions or ideas, other than dress comfortably and take a good book? Both my husband and best friend would like to go with me, is that even necessary? (They've both missed a LOT of work just hauling me back and forth for four surgeries this year). I appreciate their support, but if I really won't need them, I'd like to "save" them for another time.

Posse, here we go. I told the physician's assistant doing my assessment, that I would have an excellent outcome, with no side effects, and set the gold standard for any folks who come after me!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 27
Last reply 7/13/2011 - 5:50pm

I live in British Columbia, Canada. I am a 63 year old man who had a superficial spreading melanoma on my lower back removed 22 years ago. I had this mole on my back for 10 years and my family doctor said it was nothing to worry about. It was the size of a quarter, and was removed when I saw a dermatologist  after it tingled when I brushed my hand against it. Fast forward to the present, about 5 months ago I noticed a small lump on my back , 3 inches above the site of the original melanoma. My family doctor said it was nothing to worry about, but when I noticed it getting bigger and starting to hurt, I said " I want it off". It turned out to be melanoma in a lymph node. I went to the B.C. cancer agency in Vancouver, the oncologist looked me over, and I was given a full body FDG pet scan.  The pet scan was negative.  There was no Sentinal node biopsy, and nothing else done. I was told to see the oncologist in July. The last 3 weeks. I've had diareha which is unusual for me, and I have soreness in my armpits although I can't feel any large glands other than a pea shaped gland under each armpit. I was surprised the Cancer oncologist  didn't mention any chemo or other protocol to help me beat this. I am scared and would appreciate any advice you can give me. I pray for everyone going through this disease. Any prayers you can spare are much appreciated.

Login or register to post replies.

Anonymous's picture
Replies 11
Last reply 5/25/2011 - 6:25am

Hi all, I am from South Africa.

I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

Subsequent CT Scan confirmed this but all blood and sputum tests were negative for cancer. Doctor advised me to wait 6 months and have scan repeated to see if any growth in lesion evident.

Visited Oncologist for annual check-up following ear surgery and I told her of recent developments.
She suggested a PET scan and this confirmed possible cancerous tumour.

Surgery suggested and Metastasis Malignant Melanoma stage 4 removed April 2011 (3,5cm by 5 cm cut away). However, no signs of any spread identified.

Saw Radiologist to discuss possible treatment and wait & see approach suggested due to lack of evidence that the mel had spread to any other part of my body. Will revisit in August for further X-ray and blood test.

My concern is, will this spread or not. What I have read up so far indicates that stage 4 is incurable. However, if it has all been removed then surely this will not happen or am I wrong? Is there a possibility that it could already have spread but just does not show with the tests they do? The negative possibilities are freaking me out.

Any input will be greatly appreciated or additional info supplied if required.

Login or register to post replies.

Login or register to post replies.

HollyShoe's picture
Replies 7
Last reply 5/24/2011 - 12:00am

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

jag's picture
Replies 1
Last reply 5/23/2011 - 4:49pm
Replies by: Rebecca and Bob

BRAF trial?

if so, please elaborate on your: response/mutation/etc.

Insert Generic Inspirational Motto Here

Login or register to post replies.

Carol Taylor's picture
Replies 7
Last reply 5/23/2011 - 7:42pm

Sonce we've had so many newly diagnosed melanoma warriors join our ranks lately, all needing the same general info, I thought it might be helpful to corrale general stuff. Please add to the list.

1. Remember we're all different. Get advice and opinions from good, reliable sources, like here, but then, know yourself. Know your body, your medical history, what you can tolerate and what you can't. Make informed decisions, as best as you can realizing nothing is guaranteed, then proceed and don't look back. Don't second guess yourself. It won't help. The clock can't be turned back, so do what YOU think is best for YOU.

2, Do that under the care of melanoma specialists! I don't care if your general oncologist is your dear favorite uncle, get a referral and be treated by a melanoma specialist. That is vital! Your dermatologist, oncologist should you eed one, and surgical oncologist should ALL be melanoma specialists.

3. Don't let fear, panic, or anger rule the day. They are all normal reactions to a new diagnosis and all can be great motivators, BUT, they can work against you and paralyze instead of spur on. Attitude is key and a positive attitude is actually scientifically proven to be beneficial in a multitide of ways and an attitude of gratefulness. You can't control melanoma BUT you CAN control how you respond to this. It may take you a lot of selk-discipline to be positive but you can learn, It may come easily. It will be to your benefit to keep a good attitude.

4.Remember, your pharmacist is also a valuable resource! I'm married to one, mother to another, and sister-in-law to one. There's a mutant gene in my husband's family...they aren't the only ones, so I've seen these folks up close and personal in a way many of you haven't. They KNOW their drug interactions! Our doctors DON'T.  Shocking, but true. They know what side-effects you might experiience and can counsel you about them and when you need to call your doctor.

5. Because of number 4, please make sure you have ONE pharmacy you deal with. You have many doctors and maybe many meds. You want the best prices on all of them and that may mean you take different prescriptions to different pharmacies, or even order online. One, online, you don't get the professional counsel and you're short-changing yourself. Multiple pharmacies and online shopping both will present another problem...all your meds aren't listed together so know one is able to spot possible drug interractions that can cause real problems. It may cost you more in dollars to have all your scrips filled at one place, but you'll save in other ways that you can't put a price tag on...unless you experience a costly drug interaction problem that could have been caught and prevented had one pharmacy known ALL your meds.

Group, please add.

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.

rbruce's picture
Replies 12
Last reply 10/9/2011 - 3:46am

So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response.  Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California.  I had decided on a chemo trial to start thursday, but I'm having major second thoughts.  This will be my first treatment.  pet/ct 2 weeks ago showed a number of small lung tumors, largest grew from 8 mm to 1.1cm.  I like what I've read about Til therapy, but need at least a 2cm tumor to qualify.  Also, newly found bone met in a rib and lymph node under my armpit lighting up. Any comments/experiences would be most welcome.  Thank you.  Robert 

The circumstances of our lives have as much power as we choose to give them. David McNally

Login or register to post replies.

gtown's picture
Replies 4
Last reply 5/23/2011 - 9:56pm

Hey what's up.

I'm still awaiting biopsy results from tumor removal ( 1.9 mm approx, nodular, non-ulcerated 7 mm mitotic rate) and SNL from armpit area. The doctors at Penn hospital said they wouldn't advise interferon if it hasn't progressed to the lymph nodes. They really wouldn't discuss any therapy until the results come back, which I understand. I took interferon or pegintron for 6 months to cure Hep C and was able to work construction as well as run about 15 miles a week. I had to inject myself once a week. I want to know if the interfveron treatment  for melanoma is similiar to this? Ihave read about high dose interferon where they give you an IV for 5 days straight and then you self dose, but I can't find any info other than the basics so I decided to come to the experts to get the lowdown on this therapy. Any and all info concerning this would be greatly appreciated.

                                                                                                        Thanks

                                                                                                          Gtown    

Login or register to post replies.

annabanna's picture
Replies 6
Last reply 6/1/2011 - 7:11am

went to dermatologist and got pathology report showed malignant melanoma

brealow depth 1.05mm

clarks level IV

regression absent

luceration absent

mitoses less tha 1/mm*2

dermatologist said that will have to wait to see surgeron to find out more and he does not think waiting to june 2nd is a problem the mole is on my back

tina

Login or register to post replies.

Charlotte C's picture
Replies 3
Last reply 5/22/2011 - 6:36pm

I could not log in as Char C so I had to put my full name. For those of you who remember me, I was wife of Bill C.
I haven't logged in for a long while....

Login or register to post replies.

LisaMH's picture
Replies 8
Last reply 10/9/2014 - 9:43am
Replies by: DMU, FormerCaregiver, Anonymous, DonW, slpinion, Carol Taylor

Hi all.  Newbie here.  I got the call last week that my biopsy showed melanoma.  The details of my pathology report:

0.6 mm depth

non-ulcerated

Clark's Level II

1 mitosis

Non-brisk lymphocytic inflammation

 

I have an appointment with a general surgeon tomorrow morning.  The pathology report suggests excising with at *least* 1 cm margins, and from some of the research I've done, it looks like 2 cm might be best due to the mitosis.  I plan to ask the surgeon about that, but is there anything else I should question?

I have no idea what to expect at tomorrow's appointment and I'm pretty nervous.

Login or register to post replies.

Pages