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
POW's picture
Replies 2
Last reply 9/29/2012 - 7:56pm
Replies by: aldakota22, Mickey n Jo

My brother is Stage IV with mets in brain, lungs, adrenal, and intestines. Had WBR in early July and started Zelboraf in late July. He had no problem with side effects. MRI in early September showed old brain mets stable, but 3 new ones appeared. Clearly, Zelboraf wasn't doing what we wanted in the brain. However, we didn't know what was happening in the rest of his body. Was Zelboraf working there?

So he stayed on Zelboraf for 3 more weeks (total 2 months) and got CT scans yesterday. All non-brain tumors shrunk by 50% or more; several small ones gone entirely (including adrenal), and no new ones. That's great! We don't know what's going on with the brain-- did those mets get started in the 4 weeks before he began Zelboraf? Is Zelboraf doing some good in the brain but just not enough? Nobody knows. Zel is too new for anybody to have much experience with it. Trying to schedule gamma knife at Moffitt now. Will continue Zelboraf for 2 more months and then repeat MRI and CT. Overall, very good news. Champagne tonight for all!!

Login or register to post replies.

Mickey n Jo's picture
Replies 5
Last reply 9/26/2012 - 10:11pm

Hi, again. Let me begin by saying that we almost feel a little guilty posting a question knowing what Kevin and Brenda are going through right now. All else pales in comparison. My husbands most recent scan came back pretty much the same as the previous one, with a decrease in size of some mets and a slight increase in size of some others ( no new ones though ). I guess this is good, since he was off the Zel for almost two weeks due to the side effects. He's feeling a lot better now and has started on the Zel again, 3 pills morning and night, and so far no side effects. Should he continue with the Zel, since it is working, or should he consider switching to Yervoy? He's leaning towards continuing, especially since he hasn't had a problem with any side effects now.  Any information would be appreciated. Thanks.   

                                                                                                                   Jo

Login or register to post replies.

bron's picture
Replies 1
Last reply 9/27/2012 - 8:50am
Replies by: AllyNTAus

hello again,

please let me first note.

i have been following everyone on this board and are constantly amazed at your strength, both as individuals and as a group.

 

My daughter is still waiting on the large hospital here to give her an appointment , however, bless her local GP who has decided to

give my daughter a very thorough check up (no scans yet). Ironically the only health issue that has come out of this is a seriously low vitamin D issue.

Obviously she cannot "sunbake" (in australia you would fry or get another melanoma before you would get enough vit D from our sun) so she is on supplements

and upped her natural intake through food.

We have contacted the Poche centre in sydney (we are in Brisbane) and they say they will look at her path results both initial and from her

surgery (we didn't get any from the surgeon so that is another delay while we request them).

I have become very determined to have some of these australian sites to give more information and feedback... i keep referring them to this site as a model to copy. It must be terrifying to people here in Australia to be diagnosed and not have anywhere to get basic information. It was for us before i found this site.

Something as basic as testing for vit D (needed for the immune system) was not even mentioned by the surgeon...

It seems in Australia that if you don't do your own leg work you remain afraid and in the dark. My daughters surgeon made the comment,

(when i complained about lack of information) that ""most people don't want to know so i don't tell them anything"".

My comment on this.... give them the choice...

very kind regards from bron

 

 

 

 

 

 

 

 

Login or register to post replies.

kpcollins31's picture
Replies 1
Last reply 9/30/2012 - 8:35am
Replies by: triciad

Reached stage IIIC a couple weeks ago after a lump in my arm turned out to be a lymph node swollen by melanoma. Surgery yesterday to remove the cancerous lymph node in my left arm and to perform another sentinal lymph node biopsy. Arm is sore as would be expected. The mapping process this time around seemed much more thorough to me - nice work by the folks at Wake Forest Baptist Health Center. They very clearly identified 4 lymph nodes. The locations were surprising to me since they were in my upper arm (between my armpit and elbow). My first SNLB over a year ago took some lymph nodes below my armpit area which was much further away from the original melanoma site. Interestingly, the cancerous lymph node that was biopsied about 2 weeks ago did not get mapped - they speculated that the biopsy might have damaged the lymph pathway.

Now it is the waiting game again. Pathology results expected in a few days. Hoping that none of the other lymph nodes contain signs of melanoma. If they do, I am just going to ask them to put in a zipper down there :).

Kevin

Login or register to post replies.

Angela C's picture
Replies 2
Last reply 9/26/2012 - 9:24pm
Replies by: jag, Charlie S

Hi everyone.

Those of you who have had SRS, can you fly after that procedure? Is there a certain amount of time you are supposed to wait before you hop on a plane? I have SRS scheduled Octioer 1st and then I fly back to NIH for a follow up appointment on October 27th. They know I'm having SRS, so I assume it must be fine. But, just wondered other people's experience?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

Login or register to post replies.

Dhoke3's picture
Replies 7
Last reply 9/29/2012 - 4:28am

Hey all, I recently found out I had melanoma in situ. I was very lucky to see my dermatologist only a month after I noticed the spot and had it removed. I now know though about sun smarts. I dont go out in the sun with out sunscreen... hat... the usual... My question is that I get very frusturated when going to the beach with friends or hanging out with people who just want to "lay out" and "look healthy". I cried the day I realized I had no tan lines on my body because I was so happy,  to me that was what it meant to be healthy, but other people have different points of view. How do you handle being in situations where other people are laying out in the sun and you are hanging out under your umbrella? I often will hear people  saying things like "Oh why are you hiding under there! Come on out and get some color on your skin!" And I want to crawl even farther under that same umbrella. Any advice would be greatly appreciated! Thank you! :) 

Login or register to post replies.

Hey all, I recently found out I had melanoma in situ. I was very lucky to see my dermatologist only a month after I noticed the spot and had it removed. I now know though about sun smarts. I dont go out in the sun with out sunscreen... hat... the usual... My question is that I get very frusturated when going to the beach with friends or hanging out with people who just want to "lay out" and "look healthy". I cried the day I realized I had no tan lines on my body because I was so happy,  to me that was what it meant to be healthy, but other people have different points of view. How do you handle being in situations where other people are laying out in the sun and you are hanging out under your umbrella? I often will hear people  saying things like "Oh why are you hiding under there! Come on out and get some color on your skin!" And I want to crawl even farther under that same umbrella. Any advice would be greatly appreciated! Thank you! :) 

Login or register to post replies.

NSA's picture
Replies 5
Last reply 9/27/2012 - 8:28am

Hello,

My dad found out last week that he has melanoma in his stomach.  He had been having stomach cramping and issues going to the bathroom since the end of July.  He was going in for his 5 year colonoscopy and told the gastrologist about his symptoms so they did an upper endoscopy.  During the endoscopy they found three spots on his stomach.  They took a sample of one of the spots and called a week later to tell him the results showed it was melanoma.  He went to see a dermatologist (which he had never done before) and they removed a suspicious looking mole, but told him it didn't matter what the test results were on that, he need to see a specialist.  We live in the Richmond, VA area and he has an appointment scheduled for next week at UVA.  That's all we really know at this point so now i'm just trying to research as much as I can for him.  I've been a little overwhelmed with all of the info I have found and would just like to know what we can expect going forward.  What will they most likely do at his first appointment?  What questions should he ask?  Should he get a second opinion?  I've read enough to know that once melanoma is discovered in intermal organs it is stage 4 and it looks like clinical trials are the most common treatment. . . is that right?  Any advice or information would be greatly appreciated.  My dad has always been there for me and I want to do everything in my power to help him fight this. 

Thank you,

Nick

Login or register to post replies.

Maereard's picture
Replies 11
Last reply 9/27/2012 - 7:05am
Replies by: Lori C, Anonymous, DebbieH, Janner

Hi All!

I have ANOTHER question;)  Will life insurance companies still insure someone who has been diagnosed with melanoma?  I applied with Metlife a week before I was diagnosed, only because my father-in had just passed away from lung cancer and it occurred to me that I did not have a life insurance policy.  I did inform them that I had recently had basil cell removed and that the doctor had removed a spot for possible melanoma but the chances were very unlikely.  There is no cancer history in my family.  Well a week later I am hit with the news that I am the first in our family and I have melanoma.  The policy with MetLife is still pending because of a lab mix up with my blood and urine, strange yes but nothing surprises me much anymore.  Anyhow my question is, is there anyone out there who has applied for life insurance after an actual diagnosis has been made and were they able to recieve it?  Who did you go with?  Just a google search made it look a little impossible for a few years until I can convience the insurance companies (and maybe myself) that I am out of the woods.  As always thank you all for your replies:)

Beth

Login or register to post replies.

hola's picture
Replies 6
Last reply 9/27/2012 - 7:02pm

My dad was diagnosed in July 2011 (Stage 4), 18 years after the first outbreak !

Metastases in the liver and lung. (4 on the lung and something between 13 and 18 mets on the liver)

After researching, we found out, that zelboraf was approved by the FDA, in Europe it was still only available through clinical trials, doc did not really want to make a second biopsie, which would have been necessary to get into the trial.

I started to fly once every 6 weeks to the US to get Zelboraf there until it got approved in spring 2012 here.

Last CT did not show any liver mets reamining, regarding to the result it is unclear if there are still any mets on the liver at all.

On the lung are 3 left which are greatly reduced up to 70% and way less solid, only one met kept its size (reduced by 10% in the past year)

Condition of my dad is quite good, only sideeffect he has is the sensitive skin (no sun) and sometimes problems with the feet. Age 69 

Login or register to post replies.

Hi all,

Sorry I haven't been too good about staying in touch with everyone on this board but think of you and pray for all every day!  I've been living life!  Tomorrow is my 10 year anniversary with NED!  Diagnosed with Stage IIA melanoma in September of 2002.  Had a high mitotic rate and other unfavorable factors, offered a clinical trial, but decided to just go with the "watch" plan.  Well, ten years later and I'm still here!  Wishing all of you well and hoping and praying that some day soon they will find a real cure for this beast.   Blessings to all, Jenner

Login or register to post replies.

Maureen038's picture
Replies 2
Last reply 9/25/2012 - 3:40pm
Replies by: Maureen038, Linny

My husband has stage IIIb acral melanoma in his left big toe nail. The toe was amputated at end of april and he had one sentinel node with microscopic. His c-kit and BRAF are negative. He had groin dissection in may and everything was negative. He entered a study where he had a 2 out of 3 chance of getting yervoy, but unfortunately got interferon. He went through the month of July with the high dose and started giving himself shots after. His first CT scan a week and half ago showed a 1 cm nodule in his right lung. We are scared to death waiting for the results of needle biopsy which should come tomorrow. We are working with Dr. venna(melanoma specialist) at Washington hospital center who is wonderful and a compassionate oncologist in Gaithersburg. We are also asking for a second opinion at John Hopkins. If anyone has any advice, we would so welcome it!! My husband is 55 and is in good health otherwise.
Maureen

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 9/25/2012 - 11:05am
Replies by: polwilliams, Lucassi, Anonymous, Janner, sharmon

Hi, I'm looking for some advice about whether I should seek a second opinion about a mark that has appeared under my toenail and has been there for about a year. I can't remember exactly how or when it started but assumed I had damaged it somehow without noticing and that it had bruised or was bleeding underneath the nail. It hasn't grown out with the nail and when I did a search on the internet read that it was advisable to seek medical advice if the mark doesn't grow out within a couple of months.

My GP didn't seem to know much about it and said it was unlikely to be melanoma because it was too 'straight'. However from what I've read, this is a characteristic of this type of melanoma. I tried to attach a photo here but it doesn't seem to work. The mark is on my little toenail, is brown in colour (not reddidh or purple, more a light brown), and covers the inside half of the nail.

Grateful for any advice you can give.

Thanks

Login or register to post replies.

bron's picture
Replies 3
Last reply 9/25/2012 - 3:10pm
Replies by: Nicky, benp, AllyNTAus

Medicine Information.  
Dear MPA Member

We need your voice to ensure patients with advanced melanoma have access to affordable treatments. Please provide a comment on new PBAC submissions.

What is the Pharmaceutical Benefits Scheme (PBS)?
The Pharmaceutical Benefits Scheme (PBS) subsidises the cost of certain medicines, therefore ensuring they remain affordable.

Who decides which medicines are listed on the PBS?
The Australian Government is responsible for deciding which medicines are on the PBS, however their decision is mostly based on advice from the Pharmaceutical Benefits Advisory Committee (PBAC).

The PBAC is an independent body of experts that reviews and make recommendations to Government about newly submitted medicines.

The PBAC meets 3 times a year and its next meeting is in November 2012.

Why is this important for melanoma patients?

Although melanoma is easy to cure in its early stages, there is yet to be a drug developed that will successfully treat melanoma in its advanced stages.

In these cases, only a handful of drugs are available, and they have limited application and suitability for each individual patient.

The first new drug up for PBS recommendation is Ipilimumab or “Yervoy”. This drug contains the active substance ipilimumab, a protein which helps your immune system to attack and destroy cancer cells..

The PBAC has considered Ipilimumab twice before, and on both occasions the PBAC requested more information.

If not subsidized under the PBS, the cost for an Australian patient with advanced melanoma seeking treatment with Yervoy is approximately $120,000. Most patients will not be able to afford this in the final stages of their battle with melanoma.

How can you help?

Before the PBAC makes recommendations, it has a two week period where it considers comments from the public. This period starts from the 26 September until 10 October.

We encourage all melanoma patients, carers, family members, healthcare professionals and advocacy groups to write to the PBAC and provide the panel members with personal stories on current treatment options, and the personal impact of melanoma on life.

What kind of comments would be helpful for the PBAC?
The PBAC asks you to consider 5 questions, however you don’t have to answer all of the questions.

1. What treatment (if any) are you using now?

Guiding questions for patients:
- please describe past and current treatment(s) you have accessed?

2. What do you see as the benefits of this new medicine for you?

Guiding questions for patients:

- Have you accessed Ipilimumab? What benefits did you experience?
- If you have not accessed Ipilimumab before, explain why access to Ipilimumab could be beneficial to you?

3. How will your life and that of your family and carers be improved by this new medicine?

Guiding questions for patients:

- Describe how your life and that of your family and carers be improved by this new medicine?

Guiding questions for family and friends:
- Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
- Describe how the life of the patient and that of other family members and/or carer can be improved by this new medicine?

4. What other benefits can you see from having this new medicine on the PBS?

Guiding questions for patients:

- Without subsidy, could you currently afford it?
- If not, what other options do you have to purchase Ipilimumab?

Guiding questions for family and friends
- Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
- Why would you like to see the patient have access to Ipilimumab?
- Without subsidy, could you currently afford it?
- If not, what other options do you have to purchase Ipilimumab?

5: Do you have any comments on the consumer input process?

Guiding questions for patients, carers, family and friends:
- Do you believe the two week commenting period is sufficient?
- Do you believe that the questions asked during the consumer input process are appropriate? If so, why? If not, why not?

How to submit comments for the PBAC’s November meeting

Your comments can be submitted from 26 September until 10 October. There are three ways to do so:
1. Online at the Department of Health & Ageing website by clicking here or type this address in your web browser:
www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form
2. Call (02) 6289 8592 to request a form and send the completed form to the Department of Health & Ageing before 10 October
3. Write a letter of support and send it to PBAC, GPO Box 9848, Canberra, ACT 2601 before 10 October.

The PBAC will consider all comments submitted by 10 October.

MPA will send the outcome of the PBAC meeting to all members six weeks after the November meeting.
You can get more information by clicking here or you can type this address into your web browser:
www.health.gov.au/internet/main/publishing.nsf/Content/health-pbs-general-outcomes_full.htm

Need further information or support?
Please contact Melanoma Patients Australia on 1300 88 44 50.

1 For patients with unresectable or metastatic melanoma who have failed or are intolerant to prior therapy. For more information about ipilimumab, refer to the Consumer Medicine Information. Medicine Information. 
 

Login or register to post replies.

laheasley's picture
Replies 11
Last reply 9/26/2012 - 10:38pm
Replies by: laheasley, Janner, Anonymous, DonW

I found a spot on my side near my left breast/bra line that looked like a blood blister.  This was about a year ago.  I picked at it with tweezers and a lance thinking it would drain and was no big deal.  By the time I was done, I had basically removed the "blood blister" (which by then I knew was not a blood blister, obviously).  Some time went by before I realized that it had grown back - this time larger.  It was 3/4 the size of a pencil eraser.  I wasn't immediately concerned and let it sit on the back burner for a while as life took over.  About a month ago, I finally got around to scheduling an appointment with my dermatologist.  Her first available appointment was last Tuesday, September 18.  On Friday, September 24, I got the results.  Melanoma - 0.42 depth - not the best news, but certainly could have been worse!  I am scheduled to have it removed next Monday, October 1, unless they have a cancellation this week.  I have so many questions and very little information.  First and foremost - how can they know that the depth is 0.42 when the dr. took a shave biopsy.  I have observed two spots (my husband calls them "roots") in the remaining tissue/scab area that are dark/black and coincide with the location of the original "blood blister" and the first area where it reappeared.  If there is still melanoma remaining, is there any way to find out the actual true depth of the original melanoma?  Does it matter?  Does that make a difference in treatment?  Next question:  My dermatologist told me that she would excise a 1 cm area around the melanoma.  Is that 1 cm radius from the central point or from the edge or 1 cm total width?  I'm wondering how big the incision will be and what to expect as far as recovery/scarring.  Third question:  What are the chances that they will find more melanoma under the surface that was not removed by the initial shave biopsy.  I spoke with the nurse today and she said that the normal shave/scraping removes the tumor and the excision is just to be sure that there is no further growth.  This seems questionable to me though because I can still see those two dark spots I mentioned already - the "roots".  Fourth question:  How likely is it that a second (or third or fourth) surgery will be performed to remove additional tissue.  Both my brother and a friend had to return for additional/second surgeries.  When I spoke to the nurse, she seemed to believe that a second procedure would be very unlikely.  Now I'm uncertain what to expect.  Question five:  Will the first surgery involve removal and testing of lymph nodes based upon the 0.42 reported depth or is that unlikely?  Six:  How is the pain?  Is ibuprofen/acetominophen effective at managing it or would it be a good idea to ask for something stronger than OTC?  Seventh and final question:  I bruise terribly and make really unattractive scars.  Would that have anything to do with the melanoma or are the two unrelated?  I have worried for some time about the bruising especially.  I will wake up with multiple bruises with no idea where they came from.  It just makes me think something more could be going on here.  Well, ladies and gentlemen, thank you so much for reading this long laundry list of questions and for any advice you can share.  I felt confident that everything was fine when she first told me my diagnosis, but over the weekend, I have started to feel very uneasy ... I can't explain it.  I just have a bad feeling about all this.  Any advice for me??

P.S.  My brother has had a serious melanoma removed with no further treatment required.  My uncle died from melanoma.   My mom thinks that my dad has had a few melanomas removed from his ears but she is not certain if they were melanomas or squamous cell carcinoma.  Pretty strong family history ... :(

The child is in me still . . . and sometimes not so still. (The World of Mr. Rogers)

Login or register to post replies.

Pages