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
Squash's picture
Replies 0

I am just wondering whether other melanoma patients get or regularly have tests on their CD counts ratio aka flow cytometry

If so are most patients counts usually abnormal or out of whack?

And finally if people arent getting tested why not?

No doctor in Australia has ever even given me or suggested a blood test or count of any kind.

In fact when I mentioned it to a melanoma specialist from the Melanoma Institute in Sydney he said he didnt believe they meant much.

Surely a flow cytometry gives valuable advice on how well the immune system is function.

All my blood work is great except for this one which i got done myself overseas.

So in my mind it would make sense to try and stimulate the immune function so the CD4 ratio is back to normal and NK cells are also normal?

 

 

 

 

Login or register to post replies.

BrianP's picture
Replies 4
Last reply 10/15/2014 - 4:21am
jualonso's picture
Replies 11
Last reply 10/15/2014 - 4:29pm

Hi to everybody

Finally i have progression with Braf/Mek and we have decided to go through IPI.

Do i need washout period?

Some changes in diet?

Well, all advices are welcome....

Jualonso

Login or register to post replies.

Girl52's picture
Replies 4
Last reply 10/13/2014 - 10:18am
Replies by: Janner, Linny, Girl52

If a path report says "metastatic melanoma" and they haven't found the primary -- and assumption is that primary is/was also in skin -- does this mean that the cancer spread from skin site one-to-lymph- system- to skin site two? Or can melanoma metastisize from one skin site to another with no lymph or blood involvement? And if so, does this make the metastasis any less threatening or easier to treat? Or is it not metastasis if no blood or lymph node involvement? Hope this makes sense.

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

Login or register to post replies.

For those of you curious about an Alternative or possibly integrative approach to cancer, a free 11-part documentary begins airing tomorrow (Monday the 13th) at 9pm EST online.  The link below will take you to a trailer, if you watch the trailer and would like to watch some or all of the episodes, you would provide your email address and then you will be provided access to view the series.  I watched their last series and found it informative.  I also noted they didn't send me many emails (maybe one a month) until they started advertising this new series.  They are hoping you will like the series enough to buy it after the free period ends.  Last time, they left the videos available for viewing a full 24 hours after the initial release.  Not sure if they'll do that this time or if you have to watch "live".  There are several doctors, researchers and survivors interviewed.  Here's the link:

http://www.thetruthaboutcancer.com/fall_quest1.php

Cheers - Maggie

Login or register to post replies.

cbs805's picture
Replies 4
Last reply 10/15/2014 - 4:04am

Does anyone know what can be done about this? My husband has been required each time to sign an ABN (Advance Beneficiary Notice that the scans likely won't be covered by Medicare) for his PET/CT scans. Medicare has always paid until this last one. I know there is a limit to how many they will cover so apparently that limit has been met and we now have to pay. Is there a way of appealing this denial and getting it paid by Medicare? Why does Medicare limit the number of PET/CTs a patient can have? What scans do they recommend instead of the 6 month PET CT? Thank you

CBS805

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 11
Last reply 10/17/2014 - 11:20am

Hi Everyone,

I post often, but I'd like to keep this anonyomous.  I have been stage IV for over three years.  The cancer battle is going well, but I am really struggling with side effects.  I do not respond well to rah-rah, cherish every day . . . I do well just plugging away (I smelled the roses before stage IV).  But recently I feel borderline depressed and my marriage/personal life/work/etc., are all struggling.  I have small children and nor much 'me' time, and I am always tired.

Any [realistic] ideas?  Thanks.

Login or register to post replies.

kalisama's picture
Replies 9
Last reply 10/19/2014 - 12:29pm

I;ve been going through so much lately that i haven't had time to check in to the forums, but hope to be back around more as i contiue this journey with y'all.

I'm wondering if others with aggressive brain mets have also been diagnosed with Leptomentingeal disease? While I understand it to be somewhat rare, it now has me more concerned than the melanoma itself. I have been having increased CNS symptoms from numbness to urinary incontenance, as well as some cognitive breakdown. I'm not even sure what to ask my oncs about this new progression which is evidently very full on for me.

Last brain radiation failed, and the 2 largest tumors we are after have tripled in size in 3 weeks after cyberknife. we're going to try to go after them again this week. with the hope that the first Yurvoy infusion of 2 weeks ago may help the radiation work better this time. Starting to run out of options short of WBR, a whole other thread that I'm hoping to not have to go down here or in life.

Anyway, as always, I'm interested in your experiences and wishing you the best of health always.

Blessings and gratitude to all,
kali

Login or register to post replies.

Patina's picture
Replies 2
Last reply 10/15/2014 - 7:29am
Replies by: bilben_r, Ginger8888

Hi,

Are there any Yervoy responders who have gotten shingles?  If so, what happened after shingles? i.e. Did you stop responding to Yervoy, respond less or was this just a side effect?

My Mom had a shingles breakout (she has had them before) and there are not a lot of Yervoy patients who have had them.  Wondering if her immune system is under duress and Yervoy may not be working as well as it has, or what...  

Thanks!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 10/15/2014 - 3:14pm
Replies by: JerryfromFauq

IF ANYONE IS AROUDN AND YOU WOULD LIKE TO COME TO CHAT A FEW OF US WILL BE THERE COME VISTI US.  WOULD LOVE TO MEET YOU.  LOOK FORWRD TO SEEING YOU.  

LOVE AND LIGHT

CAROLE K

Login or register to post replies.

liam1209's picture
Replies 5
Last reply 10/11/2014 - 7:52pm

my father has metastatic melanoma stage IV (mets in his lungs) and we are deciding wether we start on ipi (hoping it works) followed by anti PD-1 or go the clinical trial route.  Right now he has not done any treatments, and I am concerned once he starts Ipi, he will be limited on his options for clinical trials.  What are some of the best clinical trials out there right now in your opinion that could benefit my fahter? 

 

thank you so much! 

Liam 

Login or register to post replies.

Replies by: Carole K

I have two small deep dark moles one arm and  foot. Although very small but it's very strange: no spread, periodically grow up with tough shell then drop, again and again for 3 years. After seeing some material, I'm so afraid that they are or would become nodular melanoma, which grow without spread.

I will stay in San Francisco this winter, so want to see a dermatologist in UCSF (referenced by posts in this forum). However, some posts say that NM is so easy to be missed, so could anyone be so kind to recommend to me an experienced doctor in UCSF? Thanks a lot!

Login or register to post replies.

tschmith's picture
Replies 10
Last reply 10/16/2014 - 12:29pm

Yesterday I finally got my first set of scan results since beginning Keytruda in July.  My tumors are shrinking! A soft tissue mass has disappeared. Some lymph nodes have gotten larger but I was told that this is common with immunotherapy and that they will hopefully shrink as well. No new mets. Got my info in a phone call so I haven't actually seen the radiologist's report yet.  My back tends to bother me in the L2 area where Melanoma fractured my vertebra, but there doesn't appear to be any changes. (Had surgery and now have 2 rods/6 screws.)  It doesn't hurt but gets stiff and tires easily. We discussed getting more physical therapy and some other options.

So...Keytruda is working and I'll get my next infusion on the 21st.  

smiley  That happy face kind of looks like me because my eyelashes and eyebrows have turned white since my third infusion.  :))))

Login or register to post replies.

bostonglory's picture
Replies 4
Last reply 10/12/2014 - 7:55am

Hi there

I had melanoma on my back when I was 16. They did a PET scan and removed bilateral axillary lymphnodes. I have been getting my blood work and x rays until 5 years out (2011).

I had a lapse in insurance and missed two years of skin checks. Anyways, I went to the doctor earlier this week and two biopsies were done. They are relevantly close to where my melanoma was last time. This is a brand new doctor for me too so I wasnt that comfortable. I am awaiting my results but I am also super nervous. I am currently 4 1/2 months pregnant and am paranoid about finding out I have melanoma again and cannot get treatment etc. I work as a nurse and live a super healthy lifestyle excercise, eat right, etc. 

I do not smoke. I dont drink. I wear sunscreen.

 

What are my chances of having melanoma again?

Login or register to post replies.

Resilient4Life's picture
Replies 7
Last reply 10/12/2014 - 9:15am

My surgery went "well" according to the surgeon who spoke to my companion that brought me. In the recovery area I pulled up the gown and gazed down on my left upper arm and was shocked by the sight of the incision. It was bigger and it curved here and there. My diagnosis 2 months ago was 1A.

I have waterproof "glue" instead of stitches in the top layer of skin. I was told the underlying layers contain stitches, and the good news is that I don't have to have anything removed. Presumably the glue wears off, and after a 2 week post op check, I see my surgical oncologist twice more at 6 month intervals to confirm there is no new growth at the surgery site.

I understand the mechanics of the WLE, with the primary lesion being excised with 1 cm of good skin surrounding it, then an oval shaped area is cut, to make the closing of the wound smoother, flatter with no bumps or ridges. Still, I was/am distressed by the length of the scar (3 1/2 inches) and the way it looks carved out.

Possible interpretations are; This is normal, the surgeon found something he didn't expect, melanoma excisions aren't supposed to be pretty, straight or asthetic. No one cares about the excision unless it's on your face, and then a plastic surgeon would be called in.

The surgeon told me during the office consult that the depth of epidermis removed is  down to the muscle. I thought I had completely understood everything before I went in. Maybe it's post op blues or just a revisiting of the initial diagnosis when I realized I have cancer. This makes it "real."

I have the ability to use a secure website to ask questions, however the Nurse Practioner that has answered two prior inquires did not even look at my chart before answering. So that avenue is unreliable.

Thank you for any and all responses.

Login or register to post replies.

Pages