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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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).

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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.


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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.





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.

  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 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). 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

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

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sal d's picture
Replies 5
Last reply 2/12/2013 - 7:56pm
Replies by: sal d, Janner, POW

Skin appt this week. I have had 4 in situs in past 11 years. 58 punch biopsies. Photos twice. I have three things I want biopsied, but I know it will be a hassle. Residents dont listen. i am a nurse spot is like two tiny black spots together on my thigh. I know it is new....within a year. So I want it off. I have not been for exam in two years because I know they think Insitus are just nothing. Frustrated. Had to switch docs due to my insurance. Any suggestions on how to get these stupid three spots taken off?

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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!

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bioguy's picture
Replies 13
Last reply 2/12/2013 - 9:35am
Replies by: kbc123, bioguy, lou2, Anonymous, POW, Gene_S, Tina D, Janner

Hi All.  I'm new to the site.  I'm a 40 y/o white male with fair skin.  I saw my primary care doc for a lesions on my chest.  It's certainly atypical for melanoma presentation, but it has enlarged over the past 18 months, and started to appear dry and bleed in spots.  It appears like a slightly raised, reddish, mole-like.  I didn't pay it much attention at first, but after my primary care suggested a see a dermatologist for a biopsy, I'm really nervous.  I didn't sleep at all last night, so on top of the anxiety, I'm exhausted. 

Any advice from you guys?  I've always thought that by the time the mole/lesion is bleeding that it's quite advanced and there's not much that can be done.  Any help you all can give would be so greatly appreciated. 


Thanks so much.

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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


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Dgentz's picture
Replies 4
Last reply 2/11/2013 - 9:55pm

Haven't been posting much, but I have visited a lot! I finished my courses (x4) of IPI, went off Z and unfortunately, have had signifcant growth.  After much pain and additional mets, I'm starting Chemo next week. sad

Words of wisdom appreciated! 

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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


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bikerwife's picture
Replies 5
Last reply 2/10/2013 - 6:08pm

we had gamma knife on brain mets have to go back on the 18 and finish he had 22 very small ones.

none of the tumors that were visible be fore z has returned. Can z be working in body and not brain?

What God leads u to he will. Lead you through

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lisab60's picture
Replies 7
Last reply 2/9/2013 - 5:35pm
Replies by: Janner, lisab60, washoegal, sjl

I was just diagnosed Friday feb 1st. I was referred to MDA on Tuesday, feb. 5th. They called me Thursday about ins stuff and said I should hear back by Friday or Monday. Just wondering if they would have app for me at this time. I am ready to get started on some kind of treatment. My gen. Onc said I am a stage 3. SCARY! I feel like this stuff is just going everywhere as I sit here waiting for them to call.

"Bring the Wood"

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dolphin5's picture
Replies 6
Last reply 2/9/2013 - 4:50pm

The watch and wait is over.  Neck tumor has grown from 2cm to 3 cm in seven week and a new one was found in the stomach.  After a long discussion the decision was left to us IL2 or IPI.  We made the decision to go with IL2 with the understanding if it did not work we would move to IPI.  Zelboraf was discussed but taken off the table.  Dr Gailani felt IL2 or IPI was best options.  We hope we made the right decision.  Any suggestion on how to deal with the side effects.  And finally we would like to thank everyone with their replies to our numerious question.  

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bron's picture
Replies 11
Last reply 2/9/2013 - 2:30pm
Replies by: lou2, POW, Gordon747, Gene_S, bron

 Hi again from Australia. Our government is asking again for information to help them decide on drug costs reimbursment to patients. And again i would like anyone who has any knowledge of the drug and treatment to click on the link and add their thoughts. the link is only open until 13.02.13.

No changes here for my daughter... still cannot get any doctor or specialist to see her...We get the same response everywhere...(she has a specialist so we cannot see her. The problem is she does not have any private insurance so is at the bottom of the list).

Her specialist (allocated by the hospital) is a surgeon and while he is excellent at his job , his attitude is , "if you find a tumor , i will cut it out"". I am still searching for a specialist that will help her monitor her body , the surgeon does not do this. Her local GP is doing a very good job of monioring her general health at the moment and we are relying on this at the moment...the search goes on...

 PS, she can book into a dermatoligist however in Australia the waiting list is over 1 and half years... She is on lists..

again...if you get melanoma...dont get it in austalia..... 

very kind regards from Bron  (Australia).




PBAC Invites Consumer Comment on Zelboraf Reimbursement

Zelboraf (vemurafenib) (commonly known amongst melanoma patients as BRAF therapy) was first considered by the Pharmaceutical Benefits Advisory Committee (PBAC) in July 2012, where a decision on recommending the medicine for PBS listing was deferred to allow the PBAC to obtain further information. The PBAC will again consider Zelboraf in March 2013.

The PBAC welcomes members of the general public to make comment on the application for a specific medicine being considered for PBS listing. The PBAC accepts these submissions, called Consumer Comments, from patients, carers, members of the public, healthcare professionals or members of consumer interest groups.

Consumer Comments in relation to Zelboraf, or any other medicine being considered by the PBAC in March 2013, close on 13 February 2013. Information on making a Consumer Comment is available at:

If you would like to make a comment the PBAC provides some questions to guide your comments (please see below). You do not have to answer all the questions. Information should be included that would help the PBAC understand how this health problem or disease affects Australians, and their families and carers.

1. What treatment (if any) are you using now?

Please describe what medicines you take to treat your health problem and how well this treatment works.

2. What do you see as the benefits of this new medicine for you?

Please describe the benefits you think the new medicine could have for your health? Do you think the new medicine could have any disadvantages?

3. How will your life and that of your family and carers be improved by this new medicine?

Please describe how you think this medicine will affect your life and the lives of your family or carers. Please explain why you think this.

4. What other benefits can you see from having this medicine on the PBS?

Please describe any other benefits you think will come from having this medicine listed on the PBS (for example: fewer hospital visits, reduced time off work and so on).

5. Do you have any comments on the consumer input process?

Please provide comments or suggestions on how this process could be improved (are the questions appropriate?, what worked well?, what needs improvement?).

Consumer Comments can be submitted in the following ways:



Mail: PBAC Secretariat

MDP 952, Department of Health and Ageing

GPO Box 9848

Canberra, ACT, 2601

Fax: 02-6289 4175


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Janet Lee's picture
Replies 17
Last reply 2/9/2013 - 8:31am

HELP! I don't know where to start. My husband was hospitalized for back pain,, and they found several tumors throughout his body (pelvic area, along spine, in his brain). Diagnosis this morning - melanoma. He has no skin lesions. This is totally out of nowhere! I'm so scared. We've been together since we were 16, and at age 62 are looking forward to growing "old" together. I cannot live without him. Where do I go? We are in the Boston area, so I am trying to get appointment with Dana Farber. We also have a home in SE Florida -- are there any top-rated melanoma treatment centers in the Fort Lauderdale / West Palm Beach area? They want to start radiation right away for his lower back pain, and maybe the brain. Please help me chart a course. I'm desperate.

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I was just diagnosed Friday feb 1st. I was referred to MDA on Tuesday, feb. 5th. They called me Thursday about ins stuff and said I should hear back by Friday or Monday. Just wondering if they would have app for me at this time. I am ready to get started on some kind of treatment. My gen. Onc said I am a stage 3. SCARY! I feel like this stuff is just going everywhere as I sit here waiting for them to call.

"Bring the Wood"

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