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.

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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

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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 

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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

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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

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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

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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. 
 

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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)

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laheasley's picture
Replies 1
Last reply 9/27/2012 - 1:20pm
Replies by: hbecker

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)

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bikerwife's picture
Replies 0

It's been awhile since I posted and I read the post daily. I was heart broken when I read kevins post. He is a inspiration to us all as well as so many others on this board. I came here so many months ago looking for help and I found a family that cried the same tears I cried felt the same emotions and gave such encouraging words.

Tonight as my thoughts are with each of you know that I cherish the bond we have and pray for you daily.

Lynn starts 4th month of z tomo. He's doing well still hasn't gained his weight back and has some joint pain hair loss and awful skin issues. We are going to dr wed. For checkup not sure when we scan again.

Belva

What God leads u to he will. Lead you through

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/25/2012 - 5:26pm

My adopted sister passed not to long ago from Melanoma.

Her children were left to me and my husband.

I want nothing more then to raise these children to be exactly like their mom.

She was wonderful.

However, I am worried I might too also die from melanoma and do not want the children to lose another "mother".

She hated the sun, only had a handful of moles, and never stepped foot in a tanning bed.

Me on the other hand, I lived in the sun as a kid, covered with oddly shaped moles and freckles, and tanned every now an then in college.

I have way more of chance at getting melanoma than my sister, so I am wondering if it is selfish of me to keep these children if this will be my fate as well.

I see the skin doctor once a year and he said everything checks out, but my sister had nodular melanoma which spread so fast.

I find myself constantly checking my skin and pulling out pictures to compare moles. My husband said I might need help. I think I may. But, again, I do not want these kids to go through another loss. I love them too much.

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newmanmark's picture
Replies 4
Last reply 9/25/2012 - 11:18am

Hello,

It has been a while since I have posted anything.  This December will be 3 years NED for me.  I was diagnosed as Stage 3C in October 2009.  I had CT scans done last week and I got the call from my Oncologist today saying that they see something on my pancreas.  I am now going for a PET scan and a more detailed CT scan.  I'm praying that it is nothing.  Has anyone had a CT scan show something and then have it come back negative for melanoma?  I'm scared.

Mark

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/24/2012 - 7:50pm
Replies by: Maereard, mlbjab, Janner, Anonymous

Hi All Again,

I'm sorry but I have another question and any response may help me sleep.  I just recently had a spot on my back removed.  It was a freckle that appeared out of no where and started to get bigger and reddish.  It came back as melanoma.   It was only .25mm breslow depth so they did wide incision surgery only and did not check my lymph nodes because the oncologist said it was not needed.  Of course now I am seeing spots everywhere.  I have not even got the stitches out from the wide incision and I have discovered a freckle on the same shoulder that is mysteriously raised.  I am not a moley person but I do have a lot of freckles and to my knowledge this is the only one that is raised.  The oncologist did look at this spot for a breif moment when I went in last week but he said that I only have the one primary spot and that was probably it.  I have like a 2% chance that it will ever come back and I should be happy.  But I still terrified.  Can it appear as a raised freckle because if you google raised freckle you get melanoma?! Has anyone had more than one primary?  and this may be a stupid question but can one be deeper than the other?  This mysterious raised freckle has me very concerned.  I understand I should be happy about .25mm breslow but from what I have read there was a 4% chance that I would ever get melanoma in the first place so the 2% chance of it coming back seems pretty likely to me:(

Beth

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himynameiskevin's picture
Replies 55
Last reply 10/8/2012 - 9:54pm

this is brenda writing on behalf of kevin....

first i wana say that you all have been an ispiration to kevin, and are the reason for his positive attitude and strenght.

i took him to the E.R on friday because he wasnt doing too good.he had an mri and the results showed a significance increase in the amount of tumors and the size of the previous ones he had.he went through whole brain radiation and it seems like it wasnt effective.we talked to the doctor today and she said that he has began to bleed in his brain, and unfortunately theres nothing more we can do.

as you can imagine our hearts are broken. he has been so strong and brave through this journey, but its time for him to go HOME. i truly belive he came into this world to inspire and show people how to be  caring loving compassionate human beings.

he's not in any pain, but he is on pain medication because it helps him relax and sleep. when the medication wears off he's able to speak to people fine. hopefully he'll be able to write a personal message later on.

please, please dont be sad, or sorry. i cant express how much love he has for you all. and since hes going HOME i know he will watch over each and every one of you, think of him as your personal angel because thats what he will be. 

i wish you all strenght and healing. and when your feeling down and out and it seems like theres no hope, please ask yourself what would kevin do?

and i promise you, you will get the strenght and motivation that you need.

 

love, brenda.

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this is brenda writing on behalf of kevin....

first i wana say that you all have been an ispiration to kevin, and are the reason for his positive attitude and strenght.

i took him to the E.R on friday because he wasnt doing too good.he had an mri and the results showed a significance increase in the amount of tumors and the size of the previous ones he had.he went through whole brain radiation and it seems like it wasnt effective.we talked to the doctor today and she said that he has began to bleed in his brain, and unfortunately theres nothing more we can do.

as you can imagine our hearts are broken. he has been so strong and brave through this journey, but its time for him to go HOME. i truly belive he came into this world to inspire and show people how to be  caring loving compassionate human beings.

he's not in any pain, but he is on pain medication because it helps him relax and sleep. when the medication wears off he's able to speak to people fine. hopefully he'll be able to write a personal message later on.

please, please dont be sad, or sorry. i cant express how much love he has for you all. and since hes going HOME i know he will watch over each and every one of you, think of him as your personal angel because thats what he will be. 

i wish you all strenght and healing. and when your feeling down and out and it seems like theres no hope, please ask yourself what would kevin do?

and i promise you, you will get the strenght and motivation that you need.

 

love, brenda.

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madeclaire's picture
Replies 2
Last reply 9/25/2012 - 2:39pm
Replies by: madeclaire, Lucassi

Im facing the difficult decision to begin treatment as a stage !V with mets to the liver.  My results for molecular testing will not be in for a week and I've already waited 6 weeks due to a problem with the first tissue sample sent to the lab.  I'm about to begin on yervoy since everything I've read indicates this could reinforce other drugs I may be eligible for should I have a mutation.  Anyone out there that can tell me realistically what I can expect everyday life to be on Yervoy?  I'll be receiving 4 doses over the next 12 weeks.

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