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
Bunmom's picture
Replies 18
Last reply 3/2/2013 - 9:42pm

The melanoma oncologist I saw yesterday recommends complete axillary dissection for my stage 3a, as I had micromets of 0.1mm to one SLN.  The surgeon who did the WLE and SNB told me before I saw the oncologist that he wouldn't recommend it because of lifetime risk of lymphedema, infection, and inability to fully utilize my (dominant) arm. 

I looked online at some of these complications and I'm freaking out. Now I don't want the axillary dissection! 

I asked about ultrasound monitoring, but was told that by the time the node swells enough to see on ultrasound it has probably spread to other parts in the body. 

I see the chances of developing lymphedema range from 15-50%, depending on which site you read. So has anyone NOT developed this after a dissection? If so, what do you think the reason is? 

Login or register to post replies.

POW's picture
Replies 3
Last reply 3/1/2013 - 8:18pm
Replies by: POW, aldakota22, DeniseK

Has anybody heard from DeniseK lately? What were the results of her PET scans? Has her nausea subsided?

Hey, Denise, if you're out there, give us an update OK?

Login or register to post replies.

dolphin5's picture
Replies 2
Last reply 3/3/2013 - 11:54pm
Replies by: democat, awillett1991

Has anyone found relief from the constant itching besides the Aveeno creme and hydroxyzine 30mg.  She was up most of the night and found little relief.  I know it takes time for this to pass but any little trick or suggestion is appreciated. 

Login or register to post replies.

eric w's picture
Replies 28
Last reply 12/28/2013 - 3:19pm
Replies by: Genny, Ali, steelergirl, eric w, POW, gabsound, Anonymous, Gene_S, Janner

Hi all,

 

My wife was diagnosed with melanoma on her arm 2 years ago. We live in Las Vegas and went to UCLA for the removal of the mole. I forget the number it was but it was ulcerated. It was removed and lymph nodes were clean. she has been getting pet/ct scans over the last two years. On the scans some subcentimeter nodules were noted without growth. This last scan 5 of the nodules hat grown but still subcentimeter....we are going to UCLA next friday and are waiting for mutation results...I have just started to read about treatments but wanted some input...first i need another facility to take my wife for second opinion...luckily we have the means to go where we need....again i live in Las Vegas....

 

my second is what type of treatment should i be expecting to hear....it seems that Yervoy is a good option or IL-2 i think it was....all the rest of her scans have been clean so far....also should we be looking at the PD-1 as well??? sorry for so many questions...scarried out of my mind....

 

by the way my wife is a beautiful healthy 42 years old.....thanks

Login or register to post replies.

dian in spokane's picture
Replies 7
Last reply 3/2/2013 - 12:27am

 I posted last night when I got fiinished with my appt, but I see now that it never appeared on the board! I saw Dr. Thompson at SCCA yesterday and it went exactly as planned.

It was great to be able to pick his brain about all the options out there, especially as I need a back up plan, but he agreed with Dr. Kaya that IL 2 is a good option for me and that I am good candidate for it.

As usual at any place that has a big clinical trial program, he offered me a trial. This one is a combo of IL 21 and Ippi. (I had looked at one with IL 21 and anti pd 1, but it's full and wil a waiting list) The trial has one slot open, but it is just not the trial for me. So I will continue to look at possible anti pd 1 trials as a second course in case I fail at the IL 2

But I'll likely be starting IL 2 on March 18th at home in Spokane.

Keep your fingers crossed for me, and I'll keep you posted on how it all goes.

Dian in spokane

Login or register to post replies.

 

News

Don't Trust Apps to Spot Skin Cancer
 
 

IMNG Medical Media, 2013 Jan 16, S Worcester
 

 

Journal Scans: Research

Cutaneous Side-Effects Associated With Vemurafenib
in Melanoma

 
 

Ann Oncol, 2013 Feb 13, L Boussemart, et al

Low Recurrence Rate in SLNB-Negative Melanoma
 
 

JAMA Surgery, 2013 Jan 16, EL Jones, et al

BRAF Inhibition Enhances Melanoma Antigen Expression
 
 

Clin Cancer Res, 2013 Jan 10, DT Frederick, et al

No Survival Advantage With Tremelimumab in Metastatic Melanoma
 
 

J Clin Oncol, 2013 Jan 7, A Ribas, et al
EXPERT COMMENTARY
 

 

Journal Scans: Review

Targeting BRAF in Melanoma: Biological and Clinical Challenges
 
Free Journal Content

Crit Rev Oncol Hematol, 2013 Feb 15, M Mandala, et al

Venous Thromboembolic Events Associated With VEGFR TKIs
 
Free Journal Content

Crit Rev Oncol Hematol, 2013 Jan 12, G Sonpavde, et al

Resistance to BRAF-Targeted Therapy in Melanoma
 
 

Eur J Cancer, 2013 Jan 2, RJ Sullivan, et al
 

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

Login or register to post replies.

Carole K's picture
Replies 7
Last reply 2/28/2013 - 9:09pm

I am going to try to get into chat again tonight.  I was unsuccessful last night as were many others.  I will e mail MRF to see if this can be taken care of.  Hope to see all of you there. Love and Light

Carole

Login or register to post replies.

mbaelaporte's picture
Replies 8
Last reply 2/28/2013 - 6:30pm
Replies by: mbaelaporte, lou2, Anonymous, ncdaniel, Carole K, jmmm, awillett1991

I am a prime candidate for a trial of anti PD1 at SCCA but an aspect of protocol is that my insurance company is notified & requested that they participate.

My company refuses to participate in trials / I'm wondering if anyone is aware of any funding available from organizations that might partner w / my self pay route?  I've worked w / Chronic Disease Fund before but they also contribute only when using FDA approved drugs.  I notice Healthwell Foundation talks of metastatic melanoma assistance only for medicare patients.

Please someone have some good info .  Many thanks,  john

Login or register to post replies.

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.

Pages