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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juless1's picture
Replies 0

Being new to the board...and new to the horrible world of melanoma....I read with interest the various posts...

But I have to say....a majority of it is like another language!  Abbreviations, treatments...etc etc....

I find myself going to another screen and googling what things mean!  Need a glossary of melanoma talk..

and I thought I was confused before....yikes!

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casagrayson's picture
Replies 5
Last reply 4/15/2013 - 5:20pm
Replies by: Anonymous, jim Breitfeller, Bubbles, casagrayson, Janner

I have a friend who was just diagnosed with Stage IV melanoma (mets to liver, spleen and lungs).  He just got back from MD Anderson and will return in ten days to start treatments.  He is overwhelmed (obviously) with all the information he has been given, and the different drug regimens that they are considering.  He did say that Yervoy is one they are definitely starting him on.  He also said that they are suggesting interferon, maybe combined with some other drugs?  He didn't mention Zelboraf, but I am sending him a link to an article about it.

Can someone point me to an study that shows that interferon does not prolong survival rates?  I know there has been discussion here on the board, but I'm having trouble putting my finger on a journal article.

In other news, my husband, who is Stage I, has not been feeling at all well.  They have looked at his heart (echo and stress test) and his blood sugars (normal), but now we think it could be anemia.  The general fatigue, dizziness, cloudy thinking, and tingling  hands and feet have me worried.  He will see his doctor next week and maybe we will find that it is nothing to be overly concerned about.  Once melanoma has become a part of your life, it seems no symptom can be dismissed as "nothing".  :(

 

Susan

Strength and Courage,

Susan

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Colleen66's picture
Replies 2
Last reply 4/15/2013 - 4:31pm
Replies by: Colleen66, Janner

As I understand it, LDH is an indicator of possible activity? Of cancer with a high LDH being the indicator.  Please correct me if I'm not understanding this correctly.  My high reading of 218 came when I was doing the high dose interferon, I could only tolerate 3 weeks and stopped all treatment.   So 1/2/13, it was 218.  Next reading on 1/8/13 was 150, next on 1/22/13 was 120.  Last one on 4/9/13 now low at 89.

The information I found on "low" LDH was that it is a genetic condition.  I'm assuming this does not apply in my case.  So I'm wondering if anyone is knowledgeable on this or has some insight. 

Thank you for any help.

Colleen 

Live!

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I'm just off a successful VATS Lobectomy to remove a 2.5 cm lesion from my left lung.

Scan 5 months ago showed that lesion and nothing else, so I'm NED as far as that goes now.

Heading to Cancer Center today for post-surgery follow up.  I know that now that I'm stage iv that more treatment options are available.  Have any folks done anything adjuvant when they're ned at stage iv, or do treatments like ipi etc only become reactionary?

My photography: http://jeffreyswansonphotography.com/

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Anonymous's picture
Replies 7
Last reply 4/15/2013 - 7:51am
Replies by: Anonymous

Has anyone ever gone to this clinic?  It sounds like a mix of standard protocol with alternative treatment.

http://www.neoplas.org/id7.html

 

If so, share your experience please. 

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/14/2013 - 11:21pm
Replies by: Anonymous, Lori C, john partrick michael murphy

I know, I know. . .I am just curious if anyone has had any experience at all with this cancer center.  I have done my share of googling.  I know many say it is "quackery" but, truthfully so much of what they use makes sense.  After having an $18,000 pet/mri, the $20,000 cost for an 18 day stay for two including all travel, room and board AND treatment is a BARGAIN!

 

We do not care about FDA approval and feel there are so many other things that play into whether that happens or not.  Not having to follow US laws gives them access to so many more options.

 

The main three treatment tools are B17/laetril, ozone therapy and high dose intravenous vitamin C.  Could these thing possibly hurt?  I don't think so.  And if they can help, why not try?  We are looking for a stage 3C patient, currently NED, so needing adjuvant therapy to stay that way for a few more decades.

 

Thoughts?  I'll try to add a link.  www.oasisofhope.com

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lou2's picture
Replies 1
Last reply 4/14/2013 - 10:00pm
Replies by: mbaelaporte
News February 01, 2013
 

Implementing Health Reform: Boosting clinical trial participation

 

IMNG Medical Media, 2013 Feb 01, ME Schneider

Following the lead of Medicare and several states, the Affordable Care Act guarantees insurance coverage for individuals participating in clinical trials for the treatment of cancer and other life-threatening diseases.

Under the 2010 health law, health plans offering individual or group coverage cannot bar participation in clinical trials and cannot discriminate against patients who take part in trials. Health plans must cover the routine patient costs associated with participation in certain clinical trials. The plans do not, however, need to cover the investigational drug or device or services provided solely to satisfy data collection and analysis needs.

The policy applies to all phase I-IV clinical trials that are conducted for the prevention, detection, or treatment of cancer or other life-threatening diseases, including federally funded trials, investigational new drug applications reviewed by the Food and Drug Administration, or drug trials that are exempt from having an investigational new drug application.

The new federal policy, which takes effect on Jan. 1, 2014, sets a minimum standard of coverage and permits more expansive state coverage laws to continue.

Dr. Sandra M. Swain, president of the American Society of Clinical Oncology (ASCO), is an expert in the field of inflammatory breast cancer treatment and has led more than 20 clinical trials. She explained how the policy change is likely to impact clinical trial participation.

 

Question: How many states already mandate coverage of clinical trials and do the laws vary?

Dr. Swain: Twenty-nine states and the District of Columbia have laws and six states have voluntary agreements with insurers to provide coverage. The laws vary tremendously. The laws and agreements do not cover plans for self-insured, large-employer plans (or so-called ERISA plans) because they are regulated by federal, not state law.

 

Question: Will this new federal policy follow Medicare’s example and covering the treatment of complications in clinical trials?

Dr. Swain: The ACA statute does not specifically mention coverage of complications. ASCO led a coalition of 19 cancer organizations in advocating for the Centers for Medicare and Medicaid Services (CMS) – the federal agency in charge of drafting the implementing regulations – to require in those regulations that insurers cover complications. The coalition submitted proposed regulatory language on this and a number of other issues and met with CMS. We are waiting on the draft regulations.

 

Question: Is the current lack of insurance coverage for clinical trials a significant barrier to participation?

Dr. Swain: Our members have cited this as a major concern. Health plans do not always deny coverage, but they often don’t make coverage explicit and there is a lot of paperwork and time delays. This can make it difficult for patients to enroll in trials in a timely manner. Some patients also choose not to consider trial participation when they learn that their health plan may not provide coverage. An analysis from Johns Hopkins University, Baltimore, provides the most recent data.

 

Question: Since this doesn’t apply to grandfathered health plans, how much of an impact is it likely to have?

Dr. Swain: When the Office of Management and Budget released a rule on grandfathered plans in June 2010, it also estimated how many plans would relinquish their grandfathered status by 2013. The conservative estimate is 39% while the high-end estimate is 69%. As time goes on, the number of plans that lose their status will increase, thereby also increasing the effect of the provision.

 

Question: What will the impact be on cancer research and patients?

Dr. Swain: We’re hoping it will help make it easier to participate in clinical trials. Perhaps our outreach to ASCO members and patients about the provision will increase awareness. Anything that makes it easier to participate in research will ultimately help bring new treatments to our patients.

 

Question: What will need to be addressed when the Department of Health and Human Services issues regulations on this provision?

Dr. Swain: The statutory language about which trials are covered is very clear. Federally funded trials (including those funded by Cooperative Groups and National Cancer Institute–designated oncology centers) for the prevention, detection, or treatment of cancer are covered – including all phases of trials (I-IV). In addition, these same types of trials that are privately sponsored are covered if they are regulated by the FDA under an investigational new drug (INDA) application or if they meet requirements to be INDA exempt. We are working with the federal government to make the coverage process as timely and straightforward as possible. We developed a standard form that could be sent to any insurer to confirm that a trial meets the coverage requirements. We are hopeful that the federal government will promote use of this type of streamlined process. It is crucial that we help patients obtain a clear coverage answer as quickly as possible.

 

Dr. Swain is the president of ASCO and the medical director of the Washington Cancer Institute at the MedStar Washington Hospital Center.

 

------------------------------------------------------------------------------------------------------------------------------------------------

 

And just in case you thought this was going to be easy to understand, here is more on grandfathered health plans:

http://www.healthreform.gov/about/grandfathering.html

 

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rbruce's picture
Replies 28
Last reply 4/14/2013 - 9:45pm

After over a year of nothing but bad news and constant tumor progression, I just met with my Doctor at UCSF who was excited to tell me that I have had over a 30% tumor reduction from the ANTI-PD1 trial I am on.  All of the results out of ASCO last weekend in Chicago about ANTI-PD1 have been very promising and have shown that responders continue to respond.  I am so grateful for the groundbreaking research that is bringing these new immunotherapies to the forefront. I am so thankful for my friends and family that have supported me.  I am eternally thankful to my love, my partner, Lisa who, without her constant love and positive encouragement, I would be lost.  

 
Today is a happy, happy day.  I thank God he continues to give me more time to live each day to the fullest.  I ask for God's blessings in your lives.
 
With love and gratitude,
 
Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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I love to ride my bike and hike...again. I cover myself, put on SP 70, but come back sunburned in the face, and my nose skin peels like a snake. What gives? I do live at almost 7,000 feet in Colorado with more UVs, but still this didn't happen before to this extent.

The history of the world is the battle between superstition and intelligence.

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arborbnb's picture
Replies 8
Last reply 4/14/2013 - 8:17pm

I don't come to MPIP very often but back 12 years ago it was my lifeline .... I was julieincanada.  I just wanted to let you know that my husband Peter turned 65 in February - we were in Hawaii and met Vicki for the first time!  Peter was dx with Stage 3b in August of 2001.  He had several surgeries, a year of high dose IFN and 6 weeks radiation.  Yes, it was very difficult and the side effects were paralyzing.  He was off work for 7 years and we really didn't think the IFN fog would ever go .  Well it did!  He is getting ready to start another year of working in mining construction .  He flies to work in a helicopter and has learned about a whole new industry.  Life is very exciting for him.  Yes he still needs gaba for neuropathy but his life ( and mine) are good.

 

Don't give up! miracles happen.  One day at a time.

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Kelly7's picture
Replies 13
Last reply 4/14/2013 - 7:00pm

Hello,

 

My brother just had his first dose of Yervoy on Wednesday and so far he feels good. I have read many posts and it seems like most people that have symptoms between dose 2 and 3. I asked my brother to ask his doctor what to look for, but his doctor told him that only 7% of people have symptoms. I feel like that number is low from reading the posts on this website. I also feel his doctor has down played treatments before(IL2). I just want my brother to be vigilant in looking for symptoms. His doctor told him that if he gets diarrhea to take imodium ad . But I'm pretty sure I read on this forum that that is a ridiculous treatment. 

 

The hospital that he is receiving Yervoy is about an hour away, so if there was any emergency he would have to go to a local hospital. I just want them to be informed and my brother as well. He is not as keen as I am to join in and participate in these type of forums. He seems to just take whatever the doctor says as 100%.

 

Thank you for any advise!

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Bunmom's picture
Replies 4
Last reply 4/14/2013 - 1:15pm
Replies by: vivian, akls, DebbieH, Linny

I'm 8 days post-op and my JP Drain is still draining quite a bit--more than 100 ml/day. I have an appointment Monday and thought I'd get it out then but now I'm thinking I won't. If you had this surgery, how long did you have the drain? 

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LynnLuc's picture
Replies 9
Last reply 4/14/2013 - 3:15am

Today is my 3 year NED ( No Evidence of Disease ) Anniversary with Stage 4 Melanoma!e 4 melanoma!- Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Richard_K's picture
Replies 8
Last reply 4/13/2013 - 6:51pm

 

I had a weird appointment with my doctor today, weird because this was the first appointment where there were no scans to review.  The scan frequency was recently changed to every twelve weeks from every six.

I was anxious about my blood work though, specifically my bilirubin.  Not to worry, all was fine and I got enough Zelboraf given to me for another six weeks.  It’s now a little over 37 months on Zelboraf.

Dick

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tony9511's picture
Replies 10
Last reply 4/13/2013 - 3:35pm

Really enjoy reading some of the posts on this board.  Once I have completed the procedure and am able to get back on this site I will be asking for different experiences with the aftercare.  Radiation, Interferon etc etc.  My surgeon says there will be a variety of options available, so that is a good thing.  But than again its the VA and you never know.  Good Luck everybody in their fight against this pain in the......disease. 

Tony

May 2012 stage 2 Clarke level IV...wx surgery

March 2013 reoccurrence same spot on should wx surgery......positive neck lymph nodes, armpit lymph nodes

April 2013 neck surgery.

May  2013 the real fight begins.

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