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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.

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Has anyone developed pancreatitus after taking interferon   I did after being on it for 3 months, Just trying to figure out if that was one of the nasty side effects that can ocurr

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Anonymous's picture
Replies 1
Last reply 8/15/2011 - 9:55pm
Replies by: bcl

ABC News link



Science Daily
Frequent Tanning Bed Users Exhibit Brain Changes and Behavior Similar to Addicts, Study Finds

ScienceDaily (Aug. 10, 2011) — People who frequently use tanning beds may be spurred by an addictive neurological reward-and-reinforcement trigger, researchers at UT Southwestern Medical Center have found in a pilot study.

This could explain why some people continue to use tanning beds despite the increased risk of developing melanoma, the most lethal form of skin cancer. The brain activity and corresponding blood flow tracked by UT Southwestern scientists involved in the study is similar to that seen in people addicted to drugs and alcohol.

"Using tanning beds has rewarding effects in the brain so people may feel compelled to persist in the behavior even though it's bad for them," said Dr. Bryon Adinoff, professor of psychiatry and senior author of the study available online and in a future print edition of Addiction Biology. "The implication is, 'If it's rewarding, then could it also be addictive?' It's an important question in the field."

About 120,000 new cases of melanoma are diagnosed in the U.S. each year, according to the Skin Cancer Foundation. People younger than 30 who use a tanning bed 10 times a year have eight times the risk of developing malignant melanoma. While public knowledge of these dangers has grown, so has the regular use of tanning beds.

In this study, participants used tanning beds on two separate occasions: one time they were exposed to ultraviolet radiation and another time special filters blocked exposure to ultraviolet radiation. Participants did not know on which session they received the real or the filtered ultraviolet exposure. At each visit, participants were asked before and after each session how much they felt like tanning. Participants were also administered a compound that allowed scientists to measure brain blood flow while they were tanning.

Dr. Adinoff, who also is a staff physician at the Veterans Affairs North Texas Health Care System, said the next step is to create technology to further study brain changes among frequent tanners.

Other UT Southwestern researchers involved in the study were Dr. Heidi Jacobe, assistant professor of dermatology; Dr. Michael Devous, professor of radiology; and Thomas Harris, senior research scientist. Former dermatology resident Dr. Cynthia Harrington served as lead author.

The study was funded by the Department of Dermatology at UT Southwestern. Dr. Steven Feldman of Wake Forest University donated the ultraviolet radiation filters used in the tanning bed, and GE Healthcare donated the radioligand, the compound that traced the brain changes.


More Evidence Tanning Beds May Be Addictive
In the presence of UV radiation, reward centers in the brains of 'tanorexics' lit up, study found

By Denise Mann

HealthDay Reporter

MONDAY, Aug. 15 (HealthDay News) -- Frequent indoor tanners may exhibit brain changes that are similar to those seen among people who are addicted to drugs and alcohol, according to a new study that adds to a growing body of evidence suggesting that indoor tanning may be addictive.

Click here to find out more!

Close to 30 million Americans visit indoor tanning salons each year despite the well-publicized risks of skin cancer associated with this practice. The U.S. Food and Drug Administration is now considering a ban on indoor tanning for people under age 18 and the American Academy of Pediatrics is on record that it supports this legislation.

The new findings, released online in advance of publication in an upcoming print issue of the journal Addiction Biology, suggest that indoor tanning taps into the brain's "reward center."

"We saw brain changes that are consistent with that of other things that are considered rewarding such as money, food or drugs," explained study author Dr. Bryon Adinoff, a professor of psychiatry at University of Texas Southwestern Medical Center at Dallas. "The same areas of the brain lit up, and we know that if something is rewarding to the brain, there is the potential for addiction."

The new study involved seven frequent tanners who said they had used tanning beds an average of about 27 of the previous 90 days.

The researchers had each participant use a tanning bed for 10-minute sessions under two conditions: in one session, the tanner was exposed to ultraviolet (UV) radiation, while in the other session special filters blocked such exposure. Volunteers did not know if the tanning session involved UV radiation or not.

Participants were asked before and after each session how much they felt like tanning. They also received an intravenous compound that allowed the researchers to measure brain blood flow during their tanning sessions.

The result: Indoor tanning sessions that involved UV radiation triggered activation of the brain's dorsal striatum region and the medial orbitofrontal cortex, each of which plays a role in reward and reinforcement. Sessions where UV radiation was blocked showed less of this type of brain activation, the team found.

The findings make sense to Dr. Heidi Waldorf, an associate clinical professor of dermatology at Mount Sinai Medical Center in New York City. "Like other addicts, 'tanorexics' continue to tan indoors and out despite clear warnings of the dangers," she said. "In my practice, I've seen women continue to tan after skin cancer surgery and after spending thousands of dollars on cosmetic procedures to rejuvenate their photodamaged skin."

But John Overstreet, the executive director of the Indoor Tanning Association, a Washington, D.C.-based trade group representing the indoor tanning industry, said that UV light is essential for survival.

"Some people overdo things, but that doesn't mean they are addicted," he said. "Moderation is the key, whether your UV exposure is from a tanning bed or sun."

More information

Find out more about the dangers of UV radiation at the Skin Cancer Foundation.

Copyright © 2011 HealthDay. All rights reserved.


Really!    In this case addiction is really an attraction. Further, it is UV lgiht we seek, not a tan. We want to be expsoed to UV light whether we tan or not. It seems like an oversimplification to call all UV exposure tanning!

[report comment]

Doug McNabb @ Aug 15, 2011 15:13:26 PM

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Centers for Disease Control and Prevention report here that   "More than one-third of the 224 tanning machines observed in 47 of the 85 facilities visited did not have any warning signs posted, and signs were difficult to see in many others"
 Public Health Research, Practice and Policy
Warning Signs Observed in Tanning Salons in New York City: Implications for Skin Cancer Prevention
Corey H. Brouse, EdD; Charles E. Basch, PhD; Alfred I. Neugut, MD, PhD

Suggested citation for this article: Brouse CH, Basch CE, Neugut AI. Warning signs observed in tanning salons in New York City: implications for skin cancer prevention. Prev Chronic Dis 2011;8(4):A88. Accessed [date].



Use of artificial tanning may be contributing to the increased incidence of skin cancer. Federal law requires warning signs to inform consumers about health risks. All of the tanning facilities in New York City were assessed for compliance with this law during April and May 2010. More than one-third of the 224 tanning machines observed in 47 of the 85 facilities visited did not have any warning signs posted, and signs were difficult to see in many others.

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Skin cancer is the most common form of cancer in the United States, and rates of melanoma, the most dangerous form, are increasing (1). A main cause of skin cancer is ultraviolet radiation. Despite the known relationship between use of tanning machines and risk of basal and squamous cell carcinomas and melanoma (2) and that radiation from “tanning beds” has been deemed a carcinogen (3), use of indoor tanning has increased (4) and may be contributing to increased incidence of skin cancer. Several studies suggest that young girls (5) and adolescents (5) are most likely to engage in tanning, but high rates of tanning have been found in adults (6). Given that ultraviolet radiation is a known carcinogen (7), a clearly visible warning sign on each tanning machine is required by the US Food and Drug Administration (8) (Box). The warning is intended to alert the potential user about the danger of overexposure to ultraviolet radiation, of not using protective eyewear, and potential adverse interactions with certain cosmetics and medications.


Research on compliance with various indoor tanning regulations is limited, but studies suggest low compliance with posting the regulations (9-11). This noncompliance may impede informed decision making by consumers and pose a threat to public health. This study was conducted to estimate the prevalence of warnings in all of the tanning facilities in New York City.

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In this cross-sectional study, we compiled telephone numbers and addresses from Yellow Pages (for Bronx, Brooklyn, Manhattan, Staten Island, and Queens) and 3 online address sites (Google, Yahoo Local, and to determine the number of tanning facilities in New York City, which yielded 183 sites. Of these, telephone outreach identified 85 (46%) tanning facilities. The remaining sites had disconnected telephone numbers or were businesses that did not offer tanning (93 [51%]); 3 (2%) sites offered only spray tanning, and 2 (1%) offered only gel tanning. This process was repeated by a second coder who confirmed that there were 183 tanning facilities listed in New York City.

The observer visited each of the 85 facilities and asked to view the machines that were not occupied by customers. The number viewed at each site varied depending on the number of machines present and available in each site. Direct observations were conducted to assess the number of tanning machines and the presence and visibility of a warning sign posted on each machine observed (Table). All tanning machines were considered, regardless of whether they were beds or stand-up models. Spray tanning devices were found at several facilities studied, and those devices were excluded from our study. All data were collected by a single person (C.H.B.) during April and May 2010. Data analysis involved descriptive statistics, including frequencies and percentages. This study was deemed not human subjects research by the Human Subjects Committee at Columbia University Medical Center.




Most tanning facilities were in Manhattan (n = 46), followed by Brooklyn, (n = 18), Queens (n = 12), Staten Island (n = 8), and the Bronx (n = 1). Most of the businesses were freestanding tanning facilities (n = 62), although some tanning machines were available in beauty salons (n = 21) and in a fitness facility (n = 2). A variable number of machines were present in each facility (total, 951; mean, 11; range, 1-42), and a different number was viewed in each facility depending on availability (range, 1-8). Of 951 machines, 224 (24%) were observed. Seventy-eight (35%) machines in 47 (55%) of the 85 facilities had no warning labels. For the remaining 146 machines, the warning labels were barely visible (n = 32); moderately visible (n = 54); clearly visible (n = 57); and completely visible (n = 3).

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This study was limited by the cross-sectional design, by having only 1 researcher conducting observations and recording data, and by uncertainty about the representativeness of the machines observed. Generalizability of the findings is restricted to New York City. Nevertheless, the findings begin to fill a gap in knowledge regarding compliance with required warnings on tanning machines. No studies were identified that used systematic direct observations of tanning machines to assess the presence and visibility of warnings. One study, conducted more than a decade ago, assessed warnings and other criteria via observation or query of a clerk but did not specify the number of tanning machines observed to measure the presence of warning signs (12).

This study suggests that compliance with federal regulations is low for warning signs on indoor tanning machines in New York City. Research is needed to verify this finding and to assess generalizability to other localities. Warning signs are not sufficient to change consumer behavior (13) but are necessary to help consumers make informed choices about indoor tanning. Regulations requiring posted warnings on tanning machines will not serve their intended purpose if compliance is low, which was found in this study.

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Author Information

Corresponding Author: Corey H. Brouse, EdD, Postdoctoral Research Scientist, Columbia University, 722 W 168th St, 7th Floor, New York, NY 10032. E-mail:

Author Affiliations: Charles E. Basch, Alfred I. Neugut, Columbia University, New York, New York.

  1. Cancer facts and figures 2009. Atlanta (GA): American Cancer Society; 2009.
  2. International Agency for Research on Cancer Working Group on Artificial Ultraviolet (UV) Light and Skin Cancer. The association of use of sunbeds with cutaneous malignant melanoma and other skin cancers: a systematic review [published correction appears in Int J Cancer 2007;120(11):2526]. Int J Cancer 2007;120(5):1116-22.
  3. Solar and ultraviolet radiation: summary of data reported and evaluation. Vol 55. Lyon (FR): World Health Organization, International Agency for Research on Cancer; 1992.
  4. Schulman JM, Fisher DE. Indoor ultraviolet tanning and skin cancer: health risks and opportunities. Curr Opin Oncol 2009;21(2):144-9.
  5. Geller AC, Colditz G, Oliveria S, Emmons K, Jorgensen C, Aweh GN, Frazier AL. Use of sunscreen, sunburning rates, and tanning bed use among more than 10,000 US children and adolescents. Pediatrics 2002;109(6):1009-14.
  6. Heckman CJ, Coups EJ, Manne SL. Prevalence and correlates of indoor tanning among US adults. J Am Acad Dermatol 2008;58(5):769-80.
  7. United States Department of Health and Human Services. Report on carcinogens, eleventh edition. Accessed June 10, 2010.
  8. US Department of Health and Human Services, Food and Drug Administration. Report to Congress: labeling information on the relationship between the use of indoor tanning devices and development of skin cancer or other skin damage. DeviceRegulationandGuidance/ Overview/MedicalDeviceUserFeeandModernizationActMDUFMA/ ucm109296.pdf. Accessed June 19, 2010.
  9. Heilig LF, D’Ambrosia R, Drake AL, Dellavalle RP, Hester EJ. A case for informed consent? Indoor UV tanning facility operator’s provision of health risks information (United States). Cancer Causes Control 2005;16(5):557-60.
  10. Mayer JA, Hoerster KD, Pichon LC, Rubio DA, Woodruff SI, Forster JL. Enforcement of state indoor tanning laws in the United States. Prev Chronic Dis 2008;5(4). Accessed May 19, 2010.
  11. Hester EJ, Heilig LF, D’Ambrosia R, Drake AL, Schilling LM, Dellavalle RP. Compliance with youth access regulations for indoor UV tanning. Arch Dermatol 2005;141(8):959-62.
  12. Culley CA, Mayer JA, Eckhardt L, Busic AJ, Eichenfield LF, Sallis JF, et al. Compliance with federal and state legislation by indoor tanning facilities in San Diego. J Am Acad Dermatol 2001;44(1):53-60.
  13. Hillhouse J, Turrisi R. Skin cancer risk behaviors. Arch Dermatol 2005;141(8):1028-31.

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Return to your place in the textTable. Categories Used to Code the Visibility of Warning Signs on Tanning Machines in 85 Tanning Facilities, New York City, 2010


Not at all visible
No warning sticker or present only in a foreign language.

Barely visible
Warning was present but not very visible because it was placed on the back of a machine, had worn-off print, was only a remnant, or used type of a size and color that made visibility very difficult.

Moderately visible
Difficult to locate the sticker because of odd placement, often on the groove of a stand-up machine between the machine and the door; in bed machines, the sticker was in obscure places on the inside. In all cases, the type was small, making visibility difficult.

Clearly visible
Warning was easier to find, often on the top of a bed machine or on the side of a stand-up machine; the type was easily readable in size, but the text still required effort to read.

Completely visible
Warning was “up front and center.” A user would notice it without having to look. On stand-up machines, these would have been affixed to the door and were in large, dark type. On bed machines, these were typically above the latch used to close the machine and were also in large, dark type.

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Box. Label Requirements and Food and Drug Administration (FDA) Policy Regarding Sunlamp Products FDA promulgated the sunlamp products performance standard, 21 Code of Federal Regulations (CFR) 1040.20, in 1979, 44 Fed. Reg. 65,352 (November 9, 1979), and most recently amended it in 1985, 50 Fed. Reg. 36,548 (September 6, 1985). This regulation requires each sunlamp product to have a label that contains a warning statement with the words:

DANGER — Ultraviolet radiation. Follow instructions. Avoid overexposure. As with natural sunlight, overexposure can cause eye and skin injury and allergic reactions. Repeated exposure may cause premature aging of the skin and skin cancer. WEAR PROTECTIVE EYEWEAR; FAILURE TO MAY RESULT IN SEVERE BURNS OR LONG-TERM INJURY TO THE EYES. Medications or cosmetics may increase your sensitivity to the ultraviolet radiation. Consult physician before using sunlamp if you are using medications or have a history of skin problems or believe yourself especially sensitive to sunlight. If you do not tan in the sun, you are unlikely to tan from the use of this product.

21 CFR 1040.20(d)(1)(i). The regulation does not specify requirements for the format in which these words must appear, or the exact location on the product that the warning label must appear, as long as it is “permanently affixed or inscribed on an exterior surface of the product when fully assembled for use so as to be legible and readily accessible to view by the person being exposed immediately before the use of the product.” 21 CFR 1040.20(d)(3)(i).

FDA also issued a letter dated June 25, 1985, regarding the warning label to sunlamp product manufacturers outlining FDA policy. The policy letter states

The intended purpose of the warning label required on sunlamp products is to provide that information necessary for the consumer to make an informed decision regarding the risks of using sunlamp products and to provide adequate directions for skin tanning. Therefore, the label must be legible and conspicuously placed on the product so as to render it likely to be read by the user under normal conditions of purchase and use.

Note: The terms “sunlamp products” and “indoor tanning devices” have the same meaning.

Source: FDA (8).


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Jan in OC's picture
Replies 4
Last reply 8/15/2011 - 7:58pm
Replies by: nickmac56, washoegal, KatyWI, Anonymous

Well, we got good news and bad news from all of Dirk's scans last week at MD Anderson.  Good news: CT shows a tiny bit of shrinkage in some lung mets, tiny growth in liver...altogether...they are calling it stable.  Bad News: 4 new mets in the brain. One is large 9x10mm, 3 small 

Papa wants Dirk to have surgery to remove the large one and he can harvest it for possible T-cells in a clinical trial.  T-cell growth is a 60% possibility in previously untreated patients.  It will take 30 to 45 days to grow cells.  Dirk also has surface spots to harvest from on his body.  We were told that those t-cells don't work as well on the brain mets.  However, because Dirk already participated in BRAF, IPI and E-7080, doctor doesn't know how that will affect possible T-cell growth overall.  

After our discussion with the neurosurgeon today, we are uncertain what to do. We do not necessarily have to have surgery for his brain mets, unless we want T-cells harvested.  Is the possibility worth the risk?  Any advice on Surgery vs WBR vs Gamma would be appreciated.

Our choices for brain mets are: 

1. Surgically remove the large tumor in the brain for T-cell trial (along with one from his side) and   (a) use Gamma Knife on other 3 or    (b) watch the other 3 while waiting for T-cells to grow.  In a few weeks after recovery,  use Bio-Chemo or Temodar until or if t-cells are ready.

2. WBR ......  only harvest T-cells from his body mets.....Use Bio-Chemo or Temodar until or if T-cells are ready.

3. Gamma Knife on all 4 tumors....only harvest T-cells from his body mets.....Use Bio-Chemo or Temodar until or if T-cells are ready.

Any input would be appreciated.


laughter is the best medicine

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MikeWI's picture
Replies 5
Last reply 8/15/2011 - 5:27pm
Replies by: michelleg, AlanM, PlantLady

This clinic is run by Keith Block who wrote "Life Over Cancer".

Has anyone heard about this clinic?  I read the book but most info seems to be more for other forms of cancer.  It talks a lot about Body and mind thearpy along with a strict diet during Chemo/immune therapy and after.

I am trying to get my HMO to pay for a visit to them, and wonder if it would be worth it. They are in Northern Illinois.

I bought several of the books recomended in my earlier post.  Thanks for the suggestions

I have been sad about the people who have recently died of our disease, and I pray for all of us.


Stage 2c(yes this still scares the crap out of me)

Search and Destroy

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EricNJill's picture
Replies 18
Last reply 8/15/2011 - 4:44pm

I created this tribute for Eric's Celebration of Life Service.  So many of you have followed our journey so I thought this would give you some insight on the man he was.


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triciad's picture
Replies 7
Last reply 8/15/2011 - 3:43pm

Hi Everyone,

I'm just catching up on the posts from the weekend, and I must say, I'm aghast!  I come here for support and advice, and thankfully, this extended family has never let me down...especially the kind, respectful MichaelFL who was attacked by name in one of the posts.  It's troubling.

I certainly respect everyone's freedom of makes this country great.  I realize people have strong opinions and are entitled to them, but the main goal here is to support and educate one another.  When posts are reduced to the negative back and forth banter out of anger, it detracts from the purpose we come help one another.

My advice is to ignore the nasty anonymous postings in order to maintain the integrity of the board.  To get involved in the back and forth arguments, only gives "Anon" a venue to spew venom.  To simply ignore removes his/her ability to continue the attacks.  Let "Anonymous" state his/her opinion (freedom of speech)...then it ends.  As hard as it will be, and I know that many, including me, will want to jump through the screen at some postings, just let it go. 

If "Anonymous" attacks a member as he/she did with Jill, simply post the positive...Jill, I support your decision and value your input on the board.  You are an incredibly generous individual to share so much of this painful journey with us in order to help us with our battles.  We love you!

Then, should Anonymous attack, ignore.  I know it will be hard, but you can lash out in your heart and in your head, just don't use the keyboard.

Just my two cents.

If you agree with me...don't reply.  If you disagree...use your freedom of speech!


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Anonymous's picture
Replies 3
Last reply 8/15/2011 - 1:48pm

Jim or anyone with  knowledge about aldara,

Jim,you mentioned in a previous post:

"Imiquimod also has antitumor activity, which might stem from the drug’s ability to stimulate a cell-mediated immune response. Application of imiquimod also leads to the release of IL-12, tumor necrosis factor α, and interferon α, which inhibit angiogenesis and increase cytotoxic T cells and natural killer cells.

Imiquimod also up-regulates IL-2, which down-regulates IL-10, thus reversing the suppression of antitumor Tcells.                                                      

You can apply the cream to your  face to stimulate the local immune system at the point of contact.  "   

       Best regards,                              

Jimmy B   


I have heard of aldara and I have the following questions about aldara?

Does aldara work on Subq's (lumps) "beneath" the skin or just "skin" cutaneous based melanoma.

I have a small lump under my skin but the lump is poking through my skin. Would aldara be effective on my subq lump if I rubbed  aldara into the lump?? There is no melanoma color on the top of the lump...just skin color.

Thanks for your help.



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lhaley's picture
Replies 5
Last reply 8/15/2011 - 1:46pm
Replies by: djpayn, jag, ValinMtl, King, triciad

I finished radiation today on my arm, it was aimed at the ulnar nerve to clean up where they could not get a margin from lymph node removal.  I was told that I would only have a little fatigue and would only be slightly pink.  Well, that didn't quite happen.  I'm exhausted and quite burnt.  The radiologist commented that I must have sensitive skin.  Yeah, I'm a redhead and pale!!!  Melanoma.... hmmmm   After day 4 when I was already blistering and after talking to Debbie from Va I questioned and they stopped the bolus.

Anyway, my question is those that have had the severe fatigue, how long does it last?  I assume that I would start bit by bit getting better quickly.  The tech commented that it could take quite some time since the radiation continues working for 90 days.   

Also, she took me off of my vitamin E and D before treatment. I did forget when I saw her yesterday to ask when I could get back on..  When I asked the tech today that's when she told me that the rad. continues working for 90 days so she wasn't sure. I was advised to call on Monday to ask (appointment was late this afternoon).  Any thoughts?  From what I read online those vitamins are not advised during radiation because of something with the free radicals. 

I was treated locally since I couldn't go the distance to Charlotte everyday. I am used to questioning what is going on with my health plan but they have not liked all of my questions.  I guess they are used to patients that just trust their word. 

I've been so grumpy and emotional that I'm even bothering myself! Can't imagine what my poor hubby has been feeling.  I am excited though to be finished!!  Now just hope that it can help to save the nerve.


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MaryBeth and Jeff's picture
Replies 25
Last reply 8/15/2011 - 1:19pm

The love of my life lost his battle with the beast tonight at 0200 Aug 8, 2000.

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PlantLady's picture
Replies 5
Last reply 8/15/2011 - 1:13pm
Replies by: jag, PlantLady, Gene_S, Anonymous

Hi all,

I have benefited from reading many posts here over the past couple of months, and I have found inspiration and encouragement.

My husband Ron was diagnosed in April with stage IV melanoma with mets in the lung, 2 ribs, and adrenal.  Since the only sign of a previous mole had been one that was "in situ" and removed in 2007, it was totally unexpected.  It was found during an XRay of the lung for another diagnostic purpose.  He was not symtomatic.  There is no outward sign of melanoma.

He is retired, age 71.  He's previously taken no drugs, has excellent bloodwork, and was very hale and hearty looking.  A picture of health, well, except for the Cancer!

Ron was referred to Dr. Lao at the University of Michigan for treatment.  He was started on Ipilimumab.  He had 2 treatments of Ipi, and started having diarrhea, fatigue and loss of appetite, loss of voice, and rapid weight loss (8 lbs in 2 wks).  His doctor put him on steroids (oral tabs, dexamethasone), plus Imodium, plus Prevacid to protect the stomach. 

One week after that, he still had diarrhea 6 times or so per day, PLUS now developed DROP FOOT!

The doctor took him off treatment.  We were pretty upset.  The doctor said maybe he can go back on it sometime down the road.  He's now down a total of about 30 pounds.  He looks skeletal, has a tough time walking because of the foot thing, and has a hoarse raspy voice (the ENT this week scoped him and said no tumors there, just muscle weakness). His skin just hangs, no muscle tone. Diarrhea continues. He continues to work out a bit, and to use the recumbant bike, but also sleeps a lot and is tired.  His appetite is huge, because ot the steroids, but it makes no difference in the weight.

He was supposed to be done with all 4 doses the end of Aug and scan the end of Sept., but instead he will be re-scanned the 21st and have the report with the doctor the 24th. 

Sorry this is so long, but I just wanted to share what the Ipi treatment has been like.  2 doses down, maybe more to go, maybe not.

Thanks for being there.


If you're going through hell, keep going. ~ Winston Churchill

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Hi all,

I probably posted on this bulletin about 2 months ago about my Mum.

Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.

On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.

The scans were not good. Although they didn't reveal any extra spots, it appears the large tumour and the spot on the top of the leg have not been affected by the radiation at all. There may be an indication also that the tumour has grown slightly.

We're (being Mum, Dad and me) are going to the oncologist on Tuesday. Mum is feeling very negative at the moment which is absolutely heartbreaking for our family.

BRAF results came back negative....oncologist also has c-kit results but hasn't told us yet which is making us think that it's negative, so Gleevac is probably a no go.

So basically it's a non-skin related melanoma, no primary (unknown primary) with no c-kit or braf mutation.

Where to from here? Surgery is still not an option. Dad and I have desperately tried researching options and contacting researchers from the US, China (including Dana Faber etc.), and no-one has replied.

Feeling very desperate now. Does anyone have any suggestions? Your help would be incredibly appreciated.

Cheers from Australia,


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KatyWI's picture
Replies 7
Last reply 8/15/2011 - 1:11pm

Hi.  I am a stage IV warrior.  Maybe you've seen me around; I am sometimes quiet on the board but I'm here almost daily.  I'm also a triathlete.  I became a runner, and later a triathlete, after I finished Interferon eight years ago. I became stage IV in 2009.  In the words of Monty Python, "I'm not dead yet."  Far from it.  In four weeks, I will complete the "big daddy" -- the Ironman triathlon.  This is a one-day event consisting of 2.4 miles of swimming, 112 miles of biking, and 26.2 miles of running.  I am dedicating my race to all of us and raising money for the MRF through the Miles for Melanoma program.  I am not asking you guys to donate - we have all "given at the office," so to speak.  But if you find my story intriguing, if you find it inspiring, or if you just want to kick the *^%$ out of mela-sucka-noma, please consider sharing my fundrasing page with others.  Post it on your Facebook.  Pester your neighbors.  Whatever.  Because I'm really motivated by that last bit - kicking the *^%$ out of mela-sucka-noma.

This link also tells more of my story - it is much more eloquent than my profile, albeit less technical.


Every one of us reading this post is surviving a melanoma diagnosis, either our own or that of someone we love and cherish deeply.  (And especially those who are surviving the heartbreak of losing that person--my heart goes out to you) 


Just keep going!

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Bruce in NH's picture
Replies 7
Last reply 8/15/2011 - 1:10pm

Good Morning from New hampshire!

As a short background, I am in my 10th year battling melanoma and I continue to win this battle! There is no giving up in my heart! Setbacks are a part of life. It's how you deal with them that makes the difference.

In the process of gaining entry into the new t-cell targeted therapy clinical trials at NIH in Bethesda, MD, I learned I had multiple melanoma metastases in the brain - more than 10. I just completed a 10 session Whole Brain Radiation Treatment (WBRT) program at the Nashua (NH) Regional Cancer Center on Wednesday. I will have a followup brain MRI on either August 25th or 29th, depending on the facility I choose. I will know by August 31st whether I am a candidate for targeted radiation to zap any remaining metastases (SRS). I remain confident and hopeful that I can proceed with SRS, get the met count to 3 or less and get started at NIH as previously planned.

If you have any specific questions you would like to ask me regarding my experiance in dealing with WBRT in confidence, you are welcome to email me at Enjoy your day, take one day at a time and be thankful we have such great technology, medications and physicians to help us through this.



Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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deardad's picture
Replies 7
Last reply 8/15/2011 - 1:07pm

Hello Im new at this......Ive been following posts on this forum and have found it to be a wealth of information and support.  My dad was diagnosed last Dec stage 3 and now has 4 x liver and 1 x spleen mets. He has just recovered from a craniotomy to remove a single met and is recovering really well. The oncologist wants us to start B RAF in 3 weeks. We feel really fortunate that he tested positive for BRAF but what back up plan should we have? Any suggestions? He is in good health otherwise and has not symptoms at the moment. Thanks.

Nahmi from Melbourne

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