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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bron's picture
Replies 1
Last reply 10/5/2012 - 3:55am
Replies by: bron

i have been thinking about this survey  as i have yet to do it....... maybe i am crazy but the article states   ..

The current cost of ipilimumab or yervoy in Australia is $120,000.

To put that in perspective the average suburban house in Brisbane costs 330,000 to 400,000.( It take two wages and 30 years to pay off.)

Ruling out that only wealthy people in Australia get melanoma then the average person would have had no access to this drug.

 I read this as .........  Very few people in Australia can answer this questionnaire .my da 

 

Would it be rude of me to ask any people on this website that have used this drug to click on the link and make their comments as to any

positive results from use of the drug ipilimumab (or yervoy). The actual form that you see when you click on the link is very basic.

 

It may help many , many people in Australia......

 

Thank you and hoping some may help....

very kind regards from bron

 

 

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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simone's picture
Replies 3
Last reply 10/9/2012 - 7:38pm
Replies by: simone, Swanee, Janner

Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.

 

By the way... Celebrating 2 years NED this weekend!  :)

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Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.

 

By the way... Celebrating 2 years NED this weekend!  :)

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/6/2012 - 9:00am
Replies by: Phil S, Anonymous, Swanee

I did a quick search and found this heartfelt entry posted on line (Noozly.com): 

 

Many of you know my only nephew Kevin Kagel has...
Posted: Oct 01, 2012 (09:51:13 PM) | Updated: Oct 02, 2012 (06:59:45 PM)

Many of you know my only nephew Kevin Kagel has been battling melanoma for two years. Sadly, Kevin, who was only 28, died over the weekend. During those two years, he researched and tried every treatment made available to him, endured side effects and setbacks, and yet remained strong, positive and thankful for anything the medical community could do to give him more time. We have a small family and Kevin was like a son to Dennis and me. He was our son Mike's and daughter Laurie's only cousin so this is a devastating loss for our family. Yet we are thankful for the time we had with this truly amazing person who was talented, kind, caring, compassionate and had a wonderful sense of humor. We treasure the memories of times spent with him including the annual beach vacations, holidays, birthdays and more. We know the impact he had on the lives of others too because a steady stream of friends showed up at the hospice in his final days to visit him. We also are so thankful for his wife Brenda who loved him deeply, was so devoted to him and strong for him, and brought him immeasurable happiness. I'll end with the last line of one of Brenda's postings on his facebook page when he entered hospice.
"If there is ever a time when you are sad or down on life, please ask yourself, 'What would Kevin do?' and I promise you will find the courage and strength you need. He loves you all!"

2 Likes

 

 

Luke 1:37

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Becky C.'s picture
Replies 9
Last reply 10/7/2012 - 10:03am
Replies by: kellygrl, Becky C., jag, Ali, Amanda, jmmm, benp

Hi everyone.I have not been on in awhile but have been reading and keepin up with my fellow patients out there.  I was so sorry to hear about Kevin.He was so courageous in sharing his experience.  After being NED for alittle over a year, I just found out this week that I have brain mets, MRI says most likely from my melanoma primary which was on my foot. I have a total of six lesions, one larger one that I will have surgery on, then follow with radiation for the rest. Not sure what treatment will be beyond that. Naturally, I am scared to death. I would really like to hear some success stories from those who were successfully treated for brain mets. I really appreciate it, thank you.

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Laurie from maine's picture
Replies 39
Last reply 10/9/2012 - 9:21pm

A couple of years ago people on this site did what I think they called an old fashioned bell ringing -  I believe the way it went is everyone went on and signed in and said they  were ringing a bell in memory of someone.

 

I wanted to say bells are ringing loud and strong here and maine for kevin!

laurie from maine

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I haven't found how to download it yet, but it can be viewed in sections on line or ordered telephonically.  Sections can be downloaded by veiwing and then "Saving AS" from the file menu.

Single give away printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

 

er.aicr.org/new/flipbooks/CancerResource/index.html

http://cancerwhatis.info/aicr-offers-diet-and-activity-tips-in-free-e-bo...

 

CancerResource: Living With Cancer

The not-for-profit American Institute for Cancer Research (AICR), noted for its investigation of links between lifestyle and cancer and now in its 30th year, has released a free digital book for cancer patients and survivors, with current, evidence-based advice on managing diet and activity during and after treatment.

The 44-page book, called “CancerResource: Living With Cancer” represents “a completely retooled version of the free information kit that AICR has offered newly diagnosed cancer patients and their families for decades,” the AICR noted in a news release. It’s expected to be especially valuable because it “focuses on the questions that patients tell us they have a hard time finding answers to,” said Alice Bender, a registered dietitian with the AICR. “There’s been a lot of new research on diet and exercise during treatment in the past few years, for example, and CancerResource translates those encouraging findings into useful tips.”

CancerResource begins with an introduction on how to use the guide, and includes these sections:

● During Treatment: Healthy Eating
● During Treatment: Getting and Staying Active
● After Treatment: Healthy Eating
● After Treatment: Getting and Staying Active
● Cancer and Its Treatment: General Information

Its content includes:

● Tips on understanding the diagnosis and finding a healthcare team
● Worksheets with questions patients should ask their healthcare providers about their diagnosis and its treatment
● Ways to use good nutrition and physical activity to help make treatment more tolerable
● How to cope with diet-related side effects and stay active during and after treatment
● Answers to “hot topics” questions about dietary and phytochemical supplements (eg, soy), macrobiotic and vegetarian diets, dietary fiber, and more
● Common cancer terms (in a glossary)
● Useful resources for patients (information about, and links for, the AICR, the National Cancer Institute, American Cancer Society, Healthfinder, MEDLINEplus, and OncoLink)

Besides the main CancerResource book, there are also CancerResource programs focusing on breast, lung, colon, and prostate cancer.

Single giveaway printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

I'm me, not a statistic. Praying to not be one for years yet.

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Linny's picture
Replies 13
Last reply 10/5/2012 - 1:40am

He is now with the angels.

There is a guestbook on this web site that you can sign.

http://www.legacy.com/obituaries/citizen-times/obituary.aspx?n=kevin-kagel&pid=160238700#fbLoggedOut

Stage III, Unknown Primary; 1 positive node in left axilla

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_Paul_'s picture
Replies 6
Last reply 10/28/2012 - 4:42pm

Hi everybody. I was at Johns Hopkins last week getting screened for their GVAX trial. I found out yesterday that their MRI found a 5mm "enhancement" in my skull directly under where the primary was (which was found in June and I am already at IIIa). The MRI itself is inconclusive as to whether it is a met or not. So if any of you have gone through something like this before I wonder how the Dr.s can verify if it is a met or not? Would they biopsy the bone itself? If it is a met how would they treat it? I don't know anything about radiation, but it would seem that the skull is a tricky place for it. So maybe they would remove bone to clear margins in the skull?

Thanks - Paul.

To exist is beyond fantastic.

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Amanda's picture
Replies 1
Last reply 10/20/2012 - 10:41pm
Replies by: Sandy11

http://www.prnewswire.co.uk/news-releases/new-four--and-five-year-survival-data-for-yervoy-ipilimumab-in-treatment-naive-and-previously-treated-metastatic-melanoma-presented-at-the-esmo-2012-congress-european-society-for-medical-oncology-171918371.html

                      "New Four- and Five-Year Survival Data for YERVOY® (ipilimumab) in Treatment-Naïve and Previously-Treated Metastatic Melanoma Presented at the ESMO 2012 Congress (European Society for Medical Oncology)"

"Give thanks in all circumstances"

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Replies by: deardad, Swanee

It is is important to let others, in a legal way, know how you wish to die.  

I know, it is not a popular subject; but with all the constant hand wringing around here, the obvious seems to escape some.

Do you have a living  will?  Do you have advanced directives?  Do you have clearly defined medical directives that remove others from altering your end of life wishes?

It is important to do so.  For instance, in my case, after 21 days of vegatative state on supplemental nutrition; all that will be discontinued.  No family member or outsider can chage that because I have advance directives.

In addition, my directives are very specific about my body and what I want and do not want.  No embalming, cremation and what is next.

See, this way, all the arguments are over.

In my mind, this is one part of self determination.

Either way; take heed and take charge.

Cheers

Charlie S

 

 

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Phil S's picture
Replies 16
Last reply 10/17/2012 - 2:51pm

We got good news this week, Phil's scans on Monday showed that his brain MRI is fine, his lung tumors are stable, and his stomach cavity tumors are shrinking slowly. These scans were almost 5 months after Phil received his T cells during the TIL trial in Houston. So we are cautiously pleased with these results and now get another three months with no treatment before his next scans to enjoy our kids and a much anticipated trip to Orlando. Phil's blood counts have rebounded nicely and he will most likely out walk us all at the Disney parks.

Just to encourage any stage 4 people who need a story of hope, Phil needed an emergency craniotomy a year ago, had WBR, six rounds of biochemo, and TIL, so from September 2011 to June 2012 he had non stop treatment! But, the great thing about TIL is once it's done you just hope the immune system takes over! Phil has been feeling well and hasn't had any treatment since the second round of high dose IL2 (part of the TIL trial) the first week of June. So, to us having the whole summer and now the whole Fall without treatment and with stable disease is an answer to our prayers. So to all the warriors in the battle, keep fighting, you just never know with this disease. And, to all the warriors who are looking down on us, your courage has inspired us and we have not forgotten you! God bless, Valerie (Phil's wife)

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carwil's picture
Replies 2
Last reply 10/5/2012 - 2:24am
Replies by: Anonymous, Charlie S

Hello.  My name is Carrie Wilson.  I am currently gathering information for a final  research project on patients with melanoma who have received Interferon.  I am looking for anyone willing to share medical records such as pathology reports, oncology reports, and personal feedback.   All names and identifying information should be withheld.  I would greatly appreciate anyoe that is willing to help.  My email is oahuwilson@gmail.com  Thank you all for your time and interest.  I hope that someday I will be able to make a difference in this field of research.  Godspeed

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momreader's picture
Replies 6
Last reply 10/22/2012 - 4:17pm

My father has melanoma in 2 places in his right leg.    It's in his lower leg and upper leg/thigh area.  He has already had a clinical trial (ipi plus mdx1106) which was a disaster for him, plus he had chemotherapy which hasn't worked.  Now they want to do an isolated limb infusion.  (Not perfusion).  Does anyone have any experience with this? What are the side effects?  What is the recovery like?  Does it affect ambulation?  Does it have good results and how long do they last?  Does anyone know the difference b/w isolated limb infusion/perfusion b/c his doctor (Sloane Kettering) said they only do ILI at Sloane.   We are nervous and any information would be greatly appreciated.  Thanks so much.

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