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
pds's picture
Replies 8
Last reply 3/5/2013 - 2:55pm
Replies by: Mandi0280, Ali, ncdaniel, Anonymous, Colleen66, Becky, Janner

Hi everyone!  I am 32 and just recently had my 6 mo full body check and had a "clean" check and this was also my 5 year mark from my first non-invasive Melanoma.  About a month later a lesion appeared on my ear and after pathology returned it showed it was another melanoma.  So I had surgery to remove the lesion and they also performed a sentinel node biopsy.  The path on the sx came back and showed clean margins on the Melanoma, but not very big.  Also, one of my lymph nodes came back positive.  I have another surgery lined up in about 1 1/2 weeks to go in and remove a larger section on the ear and to remove all the lymph nodes from that side of my neck.  I am due back to the oncologist's office later this week to discuss the staging of the cancer and future treatment.  I am guessing from what I have read on all the legit websites that they will stage it Stage III-a.  At my prior appt w/ the oncologist he briefly mentione Interferon treatment.  Just curious as to how all of you younger patients out there responded to it?  Side effects?  I am very active and healthy, so I am hoping that will be to some benefit.  I also have long, thick hair and the vain side of me is curious to how much of it I will lose??  Fertility?  Did anyone freeze eggs?  How long was the I.V. part of it?  Thanks!  I am sure I will have many questions in the future, but these will get me started =)

Thank you!

Login or register to post replies.

joy_'s picture
Replies 17
Last reply 3/4/2013 - 4:29pm

Hi everyone.  First of all, I want to say that I am really grateful for the information that everyone shares here.  It has been very beneficial...  We found out a couple of weeks ago that mel has returned after a 2 1/2 year hiatus.  My husband has tumors on his lung, liver, adrenal gland, etc.  We are waiting for the BRAF test to come back, and in the meantime I am trying to figure out what options are out there.  After talking to his doctor, it sounds like that only choices available here are either a clinical trial of Vemurafenib followed by IPI (if BRAF pos) OR choose between Ipi and IL2.

We are good with the trial if his BRAF test comes back positive but trying to have our game on to know what to do if it isn't because IL2 sounds like a horrible choice for him.  Does anyone have any suggestions based on your experience or about other trials that are being done around the country?  Is there anything else I can be looking into?  It seems like you pretty much have to have a failed attempt with IL2 or Ipi to move on to something else?  I am trying to educate myself  so any feedback would be much appreciated.

Thank you.

Login or register to post replies.

randallgford's picture
Replies 6
Last reply 3/4/2013 - 4:55am

We had our second onc visit and resuls of Pet show numerous lesions on lungs, liver, and

abdomen. Brain Mri looks clear but will repeat in 8 weeks. He wants to start Yervoy immediately.

wont get braf mutation for 3 weeks but doesnt want to wait. He talked about some chemo

drugs we could add later.

Planned to go to Moffit for a consultation tomorrow but they just called and said they are not on

our insurance and recommended we go to another facility. We have Sylvester here in Miami,

or Mt Sinai Dr Lutzky who is listed as a melanoma specialist so we are debating going there

instead for a second opinion. I still kind of want to go to Moffit and just pay the $1500 consult fee.

But we couldnt get treatment there, so hubby is leaning against going. So stressful.

Never give up!

Login or register to post replies.

dolphin5's picture
Replies 3
Last reply 3/2/2013 - 7:45pm

I am pleased to say my wife made all five days of BioChemotherapy at Kaiser Riverside under the care of Dr. Gailani.  She did experience all of the side effects except the nasua.  But what I will say is that the staff keep it all under control and were top notch.  We now have two weeks off to regroup and then back for round two.  I would like to thank everyone who responded to our numerous questions in regards if we were going in the correct direction.  We beleave we did. 

Login or register to post replies.

Littlea41's picture
Replies 7
Last reply 3/2/2013 - 8:45pm

Hello. New to the site.

About 1 week and 1 day ago I had a punch biopsy of a "cute" (or so I thought) little mole that popped up on my wrist. I was tired of listening to everyone yell at me to get it checked out so I finally did. This past Monday as I was pulling into work the dermatologist called me back with results- I have melanoma in situ.

I immediately was scheduled for an appointment to complete a whole body scan. He found a suspicious mole on my back and ended up shaving that one off for a biopsy. He also took my "life long" mole on my temple.

As far as I can remember I've always had my temple mole. About 2 years ago it started bleeding and I thought nothing of it- thought maybe I scratched it open while sleeping or something. Melanoma wasn't a term in my vocabulary and although it crossed my mind to "probably" get it checked out- I never did.

Now here I am- 27 years old with melanoma. I know I'm damn lucky it's only in situ but as I sit here waiting for the biopsy for my temple mole I can't help but feel scared. I'm a absolute wreck. When he started asking me about my temple mole I could feel my stomach drop. I could sense the panic in his voice, the way he summoned the nurse, the way he tried to cover up his nervousness when I started picking up on it.

I've got 4 stitches in the side of my head. A consistent reminder that my life may never be the same. I feel sick to my stomach. Believe me, I'm not intentionally trying to feel sorry for myself- I know far more melanoma patients are way worse then I am.

I'm just a 27 year old girl lost in a sea of unknown. Just curious how you seasoned folks get through the wait.

Waiting until Mar 19 to see a skin cancer doc to finish the surgery on the wrist.

Login or register to post replies.

ncdaniel's picture
Replies 4
Last reply 2/27/2013 - 9:45pm
Replies by: ncdaniel, NYKaren, Tina D, POW

My wife has been fighting diahrea and not feeling well three weeks after her first treatment. Called Doctor and told to monitor her. Has any one had experience sorting the difference between viral symptoms and Yervoy reactions. They both have the same side effects and since viral things are going around how can you tell?

Trust in God - Live one day at a time

Login or register to post replies.

mclaus23's picture
Replies 3
Last reply 3/1/2013 - 12:41pm
Replies by: Tina D, mclaus23, susanr

Hi All,

Has anyone had or known of anyone having an adrenal tumor biopsied that is relatively hard to get to?
All posts will help!!

Thanks!
Maggie

Login or register to post replies.

Carole K's picture
Replies 2
Last reply 2/27/2013 - 8:16am
Replies by: susanr, Carole K

I will try to be in chat tonight by 8 PM. However, I am watching my grandaughter and hopefullly she will go to bed by then.  If not, I will see you later.  Look forward to seeing you.

Love and Light

Carole K

Login or register to post replies.

bikerwife's picture
Replies 3
Last reply 2/26/2013 - 7:39pm

Gamma knife on Feb 4th for mets on brain again on Feb 18th and final one on March 13th very small size of pin heads. No problems so far. He starts abaraxene on March 4. Still showing some response to zelobraf. We are very nervous.

What God leads u to he will. Lead you through

Login or register to post replies.

fdess056's picture
Replies 2
Last reply 2/26/2013 - 2:30pm
Replies by: awillett1991, POW

Has anyone had Zelboraf and Zelboraf at the same time?  I completed Yervoy last spring and have ben on Zel for 7 months now.  Onc wants to keep me on Zel and add Yervoy.  I am considered a partial responder to both  Any info or experience would be appreciated\Thanks

FrankD Brooklyn

Login or register to post replies.

randallgford's picture
Replies 2
Last reply 2/26/2013 - 2:10pm
Replies by: WendyPam, POW

Well tomorrow is D-day with Pet scan and Brain mri results. The great news is we have a consultation with

Moffitt Center in Tampa on Thursday so I can bring them the scans and discuss Oncologists plans with them

and they can either bless them or if clinical trial etc. is in order we can discuss that. Feeling hopeful, thanks

for encouragement and advice and now I feel like Im doing all I can. I have stacks of research, most originated

from this site, it is such a gift for melanoma patients and their families.

Never give up!

Login or register to post replies.

AllyNTAus's picture
Replies 7
Last reply 3/2/2013 - 9:20pm

Hi everyone,
Looks like my time on Dabrafenib monotherapy might be coming to an end, my recent gallbladder met has now been closely followed by a small met behind my left eye (hopefully starting a short course of radiotherapy later this week to try and deal with this).

My doctor has advised me that there is a slot opening up in the Novartis combi trial that he would like to try and get me into, I am very keen as I think adding the MEK inhibitor might help with the apparent resistance issue and give me some more time. I am aware the study is pretty intense in its time demands but I am ok with dealing with that.

I am interested in knowing how anyone is finding the drugs in terms of any side effects and effectiveness, and how long people have been on the treatment without progression in their disease.

Thanks,
Ally

A bad day's fishing beats a good day's work everytime

Login or register to post replies.

Bunmom's picture
Replies 6
Last reply 3/2/2013 - 8:47pm

I had a 0.97 mm, Clark's IV removed 3 weeks ago, and followed up with wide excision and SNL. SNL showed micromets (0.1mm) in one node. I don't see the melanoma specialist till Wednesday but am looking at options he may suggest. The surgeon told me complete lymph node removal does not show a better outcome, and has some side effects. But I see that a lot of people have this done. Just having the SNL surgery really made me swell and I'm still very sore 2 weeks post op. 

Does anyone know the current recommendations? Axillary radiation? 

I'm looking at Interfueron as well, but was told by the oncologist that it only works 5% of the time. I guess I'll look at clinical trials, then? 

Does anyone just leave it all alone and hope it's all been removed? 

Not sure what to do. 

Login or register to post replies.

BernieB's picture
Replies 1
Last reply 2/25/2013 - 11:18pm
Replies by: Janner

My apologies, this post may appear twice

I had an inguinal lymphectomy 1/30, one positive node, after a primary 7 yrs ago. Now not a month later there is a "lump"  a few inches from the surgery site, was not there before, pretty scary, I am getting it checked out tomorrow. Any thoughts, BernieB

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 2/25/2013 - 11:21pm
Replies by: Janner

I listened to a program today (Cancer Summit Program) that said the best color for cancer patients to have in a room to improve them psychologically is the color mauve. It is more comforting.

White or blue are what most hospitals use which is really not the best of colors for their cancer patients.

Just thought someone might be helped from this since they were talking about many cancers not just melanoma.  If a simple color can change how we feel psychologically it might be worth a try.

Judy (loving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Pages