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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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

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Lisa - Aust's picture
Replies 1
Last reply 9/26/2012 - 8:35pm
Replies by: Tina D

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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sjl's picture
Replies 6
Last reply 9/26/2012 - 3:45pm
Replies by: MeNDave, sjl, shellebrownies

My husband was diagnosed with mucosal melanoma in the nasal cavity in April.  He had two surgeries on the nose (clear margins the second time around)  and lymph nodes,, one of which tested postive, removed.  Because of another developement with a primary lung cancer that they wanted to address first, treatment was delayed.  While waiting for treatment for the lung cancer, his melanoma marched on.  He woke up one morning and, literally, overnight, a large tumor and several pea sized tumors had popped up along the neck near the incision for the lymph node removal.  A biopsy was done and confirmed to be melanoma as suspected.  Meanwhile, everything kept growing every single day while we waited for a phone call telling us when to go back for another scan before they decided what to do.  I won't get in to all the communication problems between the doctors involved but in a matter of days the things were huge and pain developed.  It took some doing on my part but they finally told me to take him to the ER two hours away, and yes, he is being treated by a melanoma specialist at a major cancer center.  The largest tumor was pressing on a nerve, causing pain, pressing on an artery, causing high blood pressure, and close to affecting his breathing and swollowing.  They were going to discharge him after a couple of days and schedule an appointment with the melanoma guy again.  This, after all they had seen!  I got wind that the doctor was leaving the country for a few weeks and insisted that we be seen that day.  He was, and things got started.  My husband is BRAF and CKit negative, not able to tolerate IL2 (at least for now) and because things were moving so fast they decided against Yervoy and went with Carbo/Taxol.  It's working!!  I watched the tumors shrink as fast as they grew!  After one treatment, the main tumor was pretty much gone and they said they don't usually see any kind of response like that.  Has anyone else here seen that kind of a response and if so, how long did it last?  They told us that there was no durable response with the chemo and that they would use it until they could get to something else.  Last week at round 2 of treatment, they said it might just work in him and that they may not do anymore after he's finished the chemo - just keep scanning and watch.  He goes for another treatment next week and will be restaged at that time.  As you can imagine, we are pretty happy right now but I know how fast things can change.  He's not elligible for a clinical trial because of the lung cancer.  I know the options are slim, but what should I be asking the doctors and what should I be looking for?  I've learned a lot from skimming this board.  The PA told me I ask a lot of questions and that most people don't do that.  Really????  With something like this????  I like to be informed - the good, the bad, the ugly.  "I don't know" is an acceptable answer too, but I want to know as much as I can about this, realizing that there are no guarantees, everyone is different, and so on.  I'd love to hear from others who have tried carbo/taxol.

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Mickey n Jo's picture
Replies 5
Last reply 9/26/2012 - 1:24pm
Replies by: Anonymous, Mickey n Jo, awillett1991

Ok, here we are again. My husband just had a short hospital stay during which time they stopped the Zel and gave him fluids to build him up a bit. He's feeling much better now, even gained about a pound and a half, but heres the tough part, should he continue on the Zelboraf at the reduced dosage of 2 pills morning and night, or switch to Yervoy. Right now we're leaning towards continuing the Zel as long as it's working. He goes for his scan on Friday, so we'll see what that shows. How bad are the side effects associated with Yervoy? He had such a rough time on the Zel.

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panda's picture
Replies 5
Last reply 9/26/2012 - 8:37am

Hi everyone... just a quick question... it will sound relatively mild but ive been wondering. My father passed away from stage four melanoma two years ago. i went and had mine checked and i had a melanoma in very early stages on my back.. so i had it removed with a two centimetre margin. Have had a mole map and all other moles look ok, so im told... i have a rather large mole, size of tip of little finger lower abdomen area.... i have been told it does NOT look like a melanoma.. However im curious? it was quite small about ten years ago... a sort off tiny dot size.. it has grown over ten years... and is now almost size of tip of little finger area... but i am still told it does not look like melanoma.... Isnt a growing mole a sign of something not quite right? or is it normal for them to grow in size/???? also, should i just get it removed and checked anyway. The doctor and skin specialist tells me there is not cause to worry?? so should i believe them... or err on the side of caution?? thankyou all replies will be read and appreciated. 

today is a gift and thats why its called the present

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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! :) 

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Lucassi's picture
Replies 6
Last reply 9/25/2012 - 9:59pm
Replies by: Lucassi, kylez, Phil S

My husband Mike has metastatic melanoma in the left lung, brain and adrenal gland.  He developed a brain tumor and the tumor on the adrenal gland after completing Yervoy about two months ago.  He had no side effects from the Yervoy treatments which were supposed to shrink the lung tumor.  In reality, the lung tumor grew slightly larger and the brain tumor and adrenal gland tumor developed.

Mike had a craniotomy two weeks ago and is recovering without any complications.  Unfortunately, his initial tumor was Braf and Ckit negative.  As most of you know, there are not many treatment options for patients without these mutations.  We see his oncologist in two weeks to talk about further treatments. 

I would appreciate your input as what treatments might be available given my husband's history.  I am so scared that the melanoma will spread further and there won't be anything we can do to stop it.  I know that some of you have taken Temador and was wondering if anyone started taking it after a craniotomy, and how soon after the surgery? 

Thank you for any suggestions you may have. 

Sigrid

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swissfarm7's picture
Replies 29
Last reply 9/25/2012 - 6:10pm

As I mentioned in my recent, initial post, my husband and I own & operate an organic dairy farm.  He is stage 3b and may be undergoing the standard interferon treatment.  I feel like we need to be very realistic about potential side effects and prepare accordingly, perhaps hiring and training an additional employee.  (We have one employee, and my boys help out as well, but all of these guys have their own limitations, and my husband by far does the bulk of the work.)  

My husband wants nothing to do with discussing the worst case scenario.  He insists "nothing will change", a line that doesn't reassure me in the least.  Even if he tolerates the therapy like a trooper, imo things *will* change, and all of this *does* clearly affect me in a very significant way.  I can not simply move forward and act is if it'll be a walk in the park.  I need to know that our business can function properly even when he's not physically and/or mentally able to run the show.

I realize our circumstances are somewhat unique ~ not many dairy farmers around any more! ~ but I'm interested in how others prep for this sort of thing.  And, for that matter, how you handle the tension between spouses over these aspects of the disease & treatment.  I am quickly realize that being the one who's informed, and being the caregiver, might very well be as challenging as being the one with the cancer.

Thanks for any insight you can offer.

Cheers,

Colleen

Keep on keeping on.

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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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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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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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madeclaire's picture
Replies 6
Last reply 9/25/2012 - 2:59pm
Replies by: madeclaire, Charlie S, Jeff's Mom, Anonymous

Hello everyone,  I was originally diagnosed with mucosal melanoma (nasal cavity) in 2003.  It was a non pigmented lesion that began to bleed.  I then entered a vaccine trial and remained NED for 5 years but closely followed by an excellent nead and neck surgeion and an oncologist specializing in melanoma at Northwestern Memorial in Chicago.  I had a recurrance in 2008 and again had surgery which involved a partial maxillectomy (removal of some of the palate, teeth and jaw bone)  I was only offered interferon and chose not to take it.  Then I recurred again in 2011 and had more of the palat, teeth and jaw removed and received radiation.  6 weeks ago a scan can back with uptake in one neck node and several lesions in the liver.  I had tissue sent ot to be analyzed for mutations.  I waited two weeks only to be told that the results were inconclusive due to bone mixed in with soft tissue.  I decided to have the neck node removed and now await again a full molecular analysis of this tissue.  If I have either a C-Kit or Braf mutation my treatment options are clear and hopeful.  If not, my oncologist is offering me either  standard chemo, IL 2 or yervoy.  He also thought I should consider some of the trials out there.  I have been pcking through a list of more than 28 trials around the country and have narrowed it down to NIH in Bethesda which has a vaccine trial and also an IL 15 trial or the U of Chicago which is also doing a vaccine trial.  Does anyone out there have any info on better trials for someone in my situation.  As you all know when diagnosed stage IV and given less than a year to live without treatment it feels like there is a gun to your head.  I don't want to waste energy or look in too many directions at once, but I do want to make an informed decision on my next step.  I have two kids in college and would love to live to meet my grandkids.  I am also healthy and active and love life.  This board has been an inspiration to me for some time.  

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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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becky15's picture
Replies 8
Last reply 9/25/2012 - 12:27pm

A few days ago I noticed a raised skin coloured lump on the underside of my right foot, near the ball of my foot. It is about 1 cm across. I visited my GP today who doesn't think it is anything to do with my melanoma (stage 1a diagnosed 7 months ago, 0.72mm breslow on my lower left thigh near the knee with zero mitosis and invasive radial growth phase even though "superficial" Clark level 4 ), seemingly on the basis that it seems not to be attached to the tendons etc. He thought it could be a ganglion or something to do with the tendon sheaths.

Now I've done some research on the internet, however, I've gone into meltdown as it seems it could be a subcutaneous metastic melanoma and would therefore be a recurrence and fast forward me to stage 4. I'm not sure that my GP has enough knowledge about melanoma to even know about such a recurrence.

I am pulling forward my 3 monthly follow up with my consultant dermatologist to this Thursday but, in the meantime, any words of reassurance would be greatly appreciated as I am falling apart.

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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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