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
bikerwife's picture
Replies 6
Last reply 2/14/2013 - 11:53am

the good time with z is over for us. no new tumors but ones he hss is growing.  ldh up to 537. no trial till finish with gamma knife. anti pd trails starts in march. so n the mean time its temador or abraxane.

FInd out Monday.

just shocking since HE seems to be doing so good 

What God leads u to he will. Lead you through

Login or register to post replies.

Carole K's picture
Replies 6
Last reply 2/14/2013 - 3:10pm
Replies by: Janner, lou2, Phil S, kylez, NYKaren

HI Everyone,

Just wanted to remind you to come to chat toniht any time after 7 PM> EST.  We werer there last night until a little after midnight.  Come join us, ask questions, have a few laughs.  So many of us found incredible suppoet  in chat during our most diffcult times with the BEAST.  I promise we may even have a few laughs. It might help if you are feeling down.  Know we are here for you.  Hang tough..

Love and Light

Carole..  IT'S A BEAUTIFUL DAY... I OPENED MY EYES TODAY.  ..... Dr. Robert Frost

Login or register to post replies.

qtkitycat's picture
Replies 14
Last reply 2/17/2013 - 3:41am

Hi,

I want to thank everyone for creating a kind enviroment here.  I've posted before, but can't find my previous threads.

My fiance has been diagnosed with Stage IV Melanoma, mets in liver, kidney, spleen, adrenal glands and lungs ( they removed the tumorous testicle).        He has finally been approved onto Medi-cal with 100% coverage, so we would like to get a 2nd, 3rd, etc opinion and are wondering who we should go see.  We live in Bishop, Ca and will have to drive at least 3  hours to get to the closest dr, but we are willing to go further.

We just need a doctor that has a better outlook, rather than the one we are currently seeing...he says David will eventually become resistant to all treatments.  And I say BS to that!!  They've given him 10 months with now treatment and 14 months with treatment.  :(

Login or register to post replies.

dian in spokane's picture
Replies 7
Last reply 2/15/2013 - 1:46am
Replies by: Napa K, Anonymous, dian in spokane

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

Login or register to post replies.

dian in spokane's picture
Replies 5
Last reply 2/14/2013 - 5:23pm
Replies by: mbaelaporte, dian in spokane, Anonymous

can anyone tell me where they are doing anti pd1 trials? I'm willing to travel some, but I'd prefer something on the western side of the US.

 

thanks,

 

dian in spokane

Login or register to post replies.

mama1960's picture
Replies 3
Last reply 2/13/2013 - 11:15am
Replies by: _Paul_, Linny, aldakota22

CAT scan clear! Do it again in 3 months! Thanks for all the kind words and positive thoughts.

It is what it is.

Login or register to post replies.

dodgedh2's picture
Replies 9
Last reply 2/18/2013 - 6:08pm

It's been 4-1/2 years now since my surgery and stil NED! Onc says that if my next scan (6 months) comes in clean, he will be releasing me to my PC to monitor. No need to come back unless new symtoms develop. I'm still letting it sink in. Can't believe I made it this long and I'll be glad to not have those occurannces of scanxiety every 6 months. I can't shake the thought though that this monster can come back at any time, any place, and without symptoms. I'm sure my next scan is going to be a real trial for my nerves, but I'm praying that I make it with another clean bill of health.

Login or register to post replies.

lou2's picture
Replies 1
Last reply 2/12/2013 - 11:32pm
Replies by: lou2

It doesn't seem possible to post a pdf file here, so I am pasting the whole article.  It is quite long.

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

 

Editorial

 

Journal of Investigative Dermatology (2013) 133, 583–585. doi:10.1038/jid.2012.360

 

The Ever-Evolving Landscape for Detection of Early Melanoma: Challenges and Promises

 

Alan C Geller1 and Allan C Halpern1

  1. 1Department of Society, Human Development, and Health, Harvard School of Public Health, Boston, Massachusetts, USA
  2. 2Dermatology Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York, USA

Correspondence: Alan C Geller, Department of Society, Human Development, and Health, Harvard School of Public Health, 677 Huntington Avenue, Kresge 718, Boston, Massachusetts 02115, USA.

Over the past three decades, much progress has been made in reducing deaths from cancers for which preventive strategies are available. Most strikingly, mortality rates have dropped between 20 and 50% for cancers of the breast, cervix, colon, lung, and prostate (SEER, 2012). Conversely, the death rate from melanoma has remained remarkably stubborn, the product of two divergent trends: rising melanoma mortality rates for Americans aged 60 years and above, especially among men, countered by falling melanoma mortality rates for nearly all age groups below 60 years (SEER, 2012). Melanoma was once a rare disease, with fewer than 2 cases per 100,000 in the 1950s, compared with more than 25 cases per 100,000 today (SEER, 2012). It is now the fifth most common cancer in US men and the cause of more than 9,000 American deaths each year (SEER, 2012).

Until recently, doctors have had little to offer to improve the survival of patients with metastatic melanoma. Likewise, the medical and public health communities have had insufficient evidence supporting the value of melanoma screening to persuade the US Preventive Service Task Force (USPSTF) of its merit. However, in the past watershed year, major developments have impacted both ends of the melanoma disease spectrum. For advanced melanoma, the approval of two new drugs—Yervoy and Zelboraf—has ushered in a new era in therapy (Sondak and Flaherty, 2011; Luke and Hodi, 2012). These drugs, which attack specific targets in appropriately selected tumors on the one hand while bolstering the immune response to melanoma on the other, not only are helping many patients but are also paving the way for even more effective combination therapies. On the prevention end, a public health experiment in Germany has breathed new life into the prospects for population-based melanoma screening (Katalinic et al., 2012). In Schleswig-Holstein (SH), the northernmost German state (population 2.8 million), melanoma mortality dropped 40% after a population-wide screening program in which an estimated 20% of individuals aged 20 years and older were screened. By comparison, melanoma mortality in nearby Denmark and the rest of Germany changed little during the same period (2000–2009) (Katalinic et al., 2012).

The success of the SH experiment can be attributed to the collective commitment of many, including the more than 1,000 dermatologists, general practitioners, and other physicians who participated in an eight-hour training program, as well as the more than 360,000 German residents who underwent screening. Involvement by the German government, federal insurers, and the local media was also critical. In addition, the charismatic and untiring leadership of the Arbeitsgemeinschaft Dermatologische Prävention, or “Working Group on Dermatological Prevention,“ was paramount in its success. The extension of the SH screening program to the remainder of Germany bears a striking resemblance to organized efforts in Scandinavian countries to introduce the Pap smear to a largely unscreened populace in the 1960s. Although the impact of melanoma screening in Germany may fail to mirror the precipitous 90% drop in cervical cancer mortality (Sigurdsson, 1999) witnessed in Scandinavia over the first 20 years of screening, if the SH experience is replicated across the country, it will be a ringing endorsement of the value of screening. In comparing the German melanoma experience with the Scandinavian cervical cancer experience, it is important to note that a sustained, concerted effort spearheaded by local and community-wide public health officials was required to achieve a >85% rate of screening of women aged 18 years and older in many parts of Scandinavia.

In light of the size of the impact observed in SH, we can anticipate the probability of a positive outcome for the nationwide experiment in Germany. Analogous to cervical cancer screening, given the relatively low costs and morbidity associated with melanoma screening, a strong trend in reduced mortality in response to the screening should translate into a mandate for population-based screening in the United States. It is therefore imperative that we begin to address the major challenges to melanoma screening in the United States.

First, we must commit to crafting a national plan to reduce melanoma deaths to well below the rates we see today. Critical participants are already in place: more than 750,000 melanoma survivors and their estimated 2 million first-degree family members; organizations such as the American Academy of Dermatology, the American Cancer Society, and the National Council of Skin Cancer Prevention; foundations; and the National Cancer Institute and Centers for Disease Control and Prevention.

The screening effort in Germany was fueled by a creative outreach campaign coupled with nearly universal physician training and led by unprecedented funding mechanisms. The many unanswered questions for the dissemination of such a program in the United States include who will pay, who will do the screening, and whether visual examinations should be bolstered by new technologies.

Central to the plan are three long-term imperatives: (i) teach the basic, integrated skin examination to previously untrained physicians and physician extenders; (ii) screen high-risk unscreened individuals; and (iii) conduct the requisite research to quantify the risks and benefits of screening and inform screening strategies. Although persons of low socioeconomic status and white middle-aged and older men are at increased risk of fatal melanoma, they are the least likely to report having been screened. In fact, more than 50% of melanoma deaths are in white men 50 years of age and older (SEER, 2012), but only 16% have ever been screened (Coups et al., 2010). Lessons can be learned from our colleagues, policy makers, and women’s groups who have spearheaded efforts resulting in 80% of US women 50 years of age and older undergoing mammographic screening. Although most melanoma patients have seen their primary-care physician in the year before diagnosis, they often report that they were not screened for melanoma (Geller et al., 1992).

Although melanoma “writes its message in the skin for all of us to see” (Davis, 1988), formal training in melanoma detection is clearly needed. By extracting the best parts of the eight-hour mandatory continuing medical education course for German physicians and combining it with the US INFORMED (Shaikh et al., 2012) Web-based curriculum, we can produce a masterful and engaging Web-based skin cancer teaching program that can be rigorously tested for internists, nurse practitioners, and physician assistants. A recent editorial in the New England Journal of Medicine (Prober and Heath, 2012) called for similar teaching techniques for medical students. Bold and innovative successes from the Khan Academy and its online library resource of more than 3,300 educational videos show promise for teaching and disseminating new information. And the use of such technology as teledermatology, total-body photography, and digital dermoscopy, which improve sensitivity while achieving low benign:malignant biopsy rates, must be incorporated into new teaching.

Second, incorporating new policy initiatives is paramount. The USPSTF recently gave a B-level recommendation for behavioral counseling to prevent skin cancer in patients 10 to 24 years old, an upgrade from the previous I rating (insufficient evidence) (Moyer, 2012). Such ratings indicate at least fair evidence that the service improves important health outcomes and concludes that benefits outweigh harms. Results from the well-executed German screening and educational program (albeit not a randomized study) should now be proactively shared with the USPSTF, which has previously argued that there is insufficient evidence to support the recommendation of population-based skin cancer screening (Wolff et al., 2009; US Preventive Services Task Force, 2009). In its most recent report on screening, the USPSTF noted that “no studies of the benefits of screening have compared a screened population with an unscreened population with respect to appropriate health outcomes” (US Preventive Services Task Force, 2009). If, indeed, the new evidence from the SH experiment in Germany results in revised guidelines, previously unforeseen possibilities emerge. For example, the skin cancer examination could be integrated into the wellness and preventive services prevention package due to go into effect as part of the Affordable Care Act by 2014. A significant economic barrier might also be lifted because patients would no longer be subject to deductibles for preventive services and physicians could seek reimbursement for the opportunistic examination.

Third, recognizing the limitations of the Germany experiment and the need for formal studies of melanoma screening, supporting and adopting new screening guidelines could pave the way for closed health-care systems and accountable-care organizations to consider implementation of formal studies of the risks, benefits, and cost-effectiveness of screening. Ideally, a randomized clinical trial of screening would be conducted. Unfortunately, however, the costs of such a study, especially in the current political and economic climate, may be prohibitive. For example, the cost of one proposed study—a five-year screening study involving 350,000 intervention and 700,000 control subjects and 12 years of follow-up—was estimated to be $70 million (Geller, 2009).

Prior to the launch of a national population-based screening trial, various components of the model should be pilot-tested in a stepped and coordinated fashion. Large numbers of physicians will need to be trained in the basic, integrated skin exam, and strategies to encourage participation must be developed. Physician extenders, such as physician assistants, nurses, nurse practitioners, and dermatology nurse practitioners, would also be important candidates for training as well as for participating in controlled studies evaluating online versus in-person training. The next steps would be to fine-tune patient recruitment and outreach strategies, test the new technologies, and devise a follow-up protocol. The resulting strategies could be piloted and demonstrated with those at highest risk for melanoma, such as first-degree relatives of melanoma patients and individuals with multiple atypical moles.

A study of potential harms of screening is key—although the USPSTF has expressed concern that false-positive results may lead to biopsies and unnecessary treatment, they have acknowledged that the evidence to back up this theory is limited (Wolff et al., 2009). Screening should be lodged within closed health-care systems that have experience in large screening trials and the demonstrated ability to follow up on all participants. They would also need to be capable of capturing melanoma thickness, mortality, and other relevant data. In addition, there may be the potential to seek funding for a Medicare demonstration project, possibly in a state with high melanoma mortality rates and physician networks lodged in underserved areas. Lessons can be learned on obtaining cost estimates for broad-scale public health efforts from the Assessing Cost-Effectiveness–Obesity group and its important contribution to obesity-prevention programs (Carter et al., 2009).

Finally, maximal resources from cancer-control organizations, including those in the United States, Germany, and the rest of Europe, should be devoted to optimizing data collection in these and comparator nations. The SH population-based screening program described above was a precursor to a large and expansive ongoing effort throughout Germany. To date (from 1 July 2008 through 1 July 2012), more than 75% of the general practitioners and dermatologists in Germany have completed the mandatory eight-hour training program, and more than 20 million screenings of individuals aged 35 years and older have been performed. Studies comparing melanoma mortality rates; evaluating tumor thickness in all cases diagnosed before, during, and after screening; and analyzing the costs of screening should be conducted in Germany and the results compared with those in neighboring nations.

In summary, in the United States, melanoma remains the only preventable cancer for which mortality rates are not dropping (SEER, 2012; Coups et al., 2010; Centers for Disease Control and Prevention, 2012). Nevertheless, population-wide screening rates remain low. As melanoma rates continue to rise and patient demand for screening accelerates, the current deficit in the dermatology workforce will become even more apparent. However, a confluence of new developments holds much promise. Web-based technology affords the potential to teach standardized skin cancer examinations to physicians, physician extenders, and high-risk patients in multiple settings. Digital dermoscopy offers clinicians new options for distinguishing between benign, atypical, and aggressive lesions. The Affordable Care Act has the promise of providing screenings to the majority of the US high-risk population that has yet to be screened. Finally, the results of the German screening program provide new and important evidence for the value and benefits of visual examination for melanoma.

References
  1. Carter R, Moodie M, Markwick A et al. (2009) Assessing cost-effectiveness in obesity (ACE-obesity): an overview of the ACE approach, economic methods and cost results. BMC Public Health 9:419
  2. Centers for Disease Control and Prevention (2012) Cancer Screening in the United States http://www.cdc.gov/cancer/colorectal/what_cdc_is_doing/screening_us.htm. Accessed 1 August 2012
  3. Coups EJ, Geller AC, Weinstock MA et al. (2010) Prevalence and correlates of skin cancer screening among middle-aged and older white adults in the United States. Am J Med 123:439–45 | Article | PubMed |
  4. Davis NC (1988) Malignant melanoma: the Australian contribution. Aust NZ J Surg 58:605–17 | Article |
  5. Geller AC (2009) Educational and screening campaigns to reduce deaths from melanoma. Hematol Oncol Clin North Am 23:515–27 | Article | PubMed |
  6. Geller AC, Koh HK, Miller DR et al. (1992) Use of health services before the diagnosis of melanoma: implications for early detection and screening. J Gen Intern Med 7:154–7 | Article | PubMed |
  7. Katalinic A, Waldmann A, Weinstock MA et al. (2012) Does skin cancer screening save lives?: an observational study comparing trends in melanoma mortality in regions with and without screening. Cancer 118:5395–402 | Article | PubMed |
  8. Luke JJ, Hodi FS (2012) Vemurafenib and BRAF inhibition: a new class of treatment for metastatic melanoma. Clin Cancer Res 18:9–14 | Article | PubMed | CAS |
  9. Moyer VA for the U.S. Preventive Services Task Force (2012) Behavioral counseling to prevent skin cancer: U.S. Preventive Services Task Force Recommendation Statement. Ann Intern Med 157:59–65
  10. Prober CG, Heath C (2012) Lecture halls without lectures—a proposal for medical education. N Engl J Med 366:1657–9 | Article | PubMed |
  11. SEER Cancer Statistics Review 1975–2009 (Vintage 2009 Populations). http://seer.cancer.gov/csr/1975_2009_pops09/index.html. Updated 30 April 2012
  12. Shaikh WR, Geller A, Alexander G et al. (2012) Developing an interactive Web-based learning program on skin cancer: the learning experiences of clinical educators. J Cancer Educ 27:709–16 | Article | PubMed |
  13. Sigurdsson K (1999) The Icelandic and Nordic cervical screening programs: trends in incidence and mortality rates through 1995. Acta Obstet Gynecol Scand 78:478–85 | Article | PubMed | ISI | CAS |
  14. Sondak VK, Flaherty LE (2011) Targeted therapies: improved outcomes for patients with metastatic melanoma. Nat Rev Clin Oncol 8:513–5 | Article | PubMed |
  15. US Preventive Services Task Force (2009) Screening for skin cancer: Services Task Force recommendation statement. Ann Intern Med 150:188–93
  16. Wolff T, Tai E, Miller T (2009) Screening for skin cancer: an update of the evidence for the U.S. Preventive Services Task Force. Ann Intern Med 150:194–8 | PubMed |
Top of page
Acknowledgments

We recognize Susan Swetter, MD, and Martin Weinstock, MD, PhD, for their tireless commitment to preventive efforts to reduce melanoma mortality.

Login or register to post replies.

sharmon's picture
Replies 2
Last reply 2/19/2013 - 10:43am
Replies by: DonJ, Anonymous

I need to know if anyone has an opinion on Temador for Brent. 

Login or register to post replies.

sharmon's picture
Replies 6
Last reply 2/12/2013 - 11:52pm
Replies by: Josh, awillett1991, aldakota22, POW, sharmon, Anonymous

brent has failed the anti pd 1 trial.   there is a doctor in area suggesting temador along with radiation.  I need an input plllease.  he is at hospice now trying to get pain under control.

sharonl

Login or register to post replies.

chiaraj77's picture
Replies 1
Last reply 2/15/2013 - 3:31am
Replies by: DeniseK

I have had several basal cells removed and my doctor (have actually only seen the NP) is very laid back and all about wait and see. My insurance just switched and I would love to find a better practice to go to.  I am looking for a doctor in Pleasanton, Danville, Walnut Creek, etc.  Thank you so much. 

Login or register to post replies.

Replies by: Charlie S

The last person leaves.  I have sent e-mails to other Old Timers from MPIP to ask them to meet in chat tomorrow night thru Thurs.  at 7 PM EST. until the last one leaves. We have patients/caregivers from the East Coast as well as the WEst Coast so I am sure many of us will come and go.  Most of the people who I think will be there are LONG TERM SURVIVORS with incredible stories of hope for those of you who would like to chat with us.  Know many of us are there to help you during these difficult times.  Hang in there.

Love and Light

Carole

Login or register to post replies.

The last person leaves.  I have sent e-mails to other Old Timers from MPIP to ask them to meet in chat tomorrow night thru Thurs.  at 7 PM EST. until the last one leaves. We have patients/caregivers from the East Coast as well as the WEst Coast so I am sure many of us will come and go.  Most of the people who I think will be there are LONG TERM SURVIVORS with incredible stories of hope for those of you who would like to chat with us.  Know many of us are there to help you during these difficult times.  Hang in there.

Love and Light

Carole

Login or register to post replies.

lou2's picture
Replies 5
Last reply 2/13/2013 - 12:27am
Replies by: kylez, lou2, buffcody, Carole K

Three melanoma experts and moderator from MRF.  Lasted about an hour.  In a couple of days, they will be posting this at the website, along with answers to questions that were submitted.  Good intro for newbies to melanoma (like me).

Login or register to post replies.

Reneezd's picture
Replies 6
Last reply 2/12/2013 - 9:52am
Replies by: Anonymous, POW, Harry in Fair Oaks, awillett1991

My boyfriend started a clinical trial with PX866 and Zelbraf right before Christmas. He had had a scan that showed possible spots on his luings, too small to biopsy, as well as a fast growing tumor on his cheekbone. Previously he had a large melanoma on his forehead/hairline removed and his lymphnodes as well on both sides of his neck. There was melanoma in all of that.
Once he started the clinical trial and the tumor on his cheek went away, he asked about going off the trial so his body would not get immune to themeds as quickly as the doctors say (7-9 months). Once of the nurses told him he would be on medication for the rest of his life. The doctors seem to talk around the subject.
My question is, would it be better to do something harsh like the IL2 and have a chance of remission? The clinical trial is wearing him down, his weight and energy levels are super low. I just don't understand the benefit of it if it doesn't have a chance of remission.<
Thank you!

Login or register to post replies.

Pages