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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Ashykay's picture
Replies 6
Last reply 8/16/2011 - 9:41am

Hi all,

Just thought I would provide an update after my Mum's oncologist appointment today.

All in all, it's not great. The oncologist would like to keep her CT scans to ensure that the growth didn't actually occur prior to the radiation, and whether or not the radiation has affected the density of the tumour, although this doesn't appear to have reduced the tumour on the outside. I think realistically we can take from this however that the tumour has grown and radiation wasn't successful at all. We are praying to be proven wrong.

Options from here on - although Mum's biopsy tested negative to c-kit positive gene mutation, the oncologist seems to still be pushing the Gleevac due to the c-kit staining. Dad and I tried to raise some immunology treatments such as Yervoy with him but he was incredibly dismissive of it and recommended Gleevac still. He back pedaled again then by saying that he needs to get access to the drug - he had basically guaranteed us weeks ago that this would be accessible, even if Mum didn't have the biopsy tested for c-kit positive. Quite po'd at this. He has recommended us to an immunologist to see what his opinion is, but he was very discouraging of this approach due to teh side effects involved with immunology drugs (which I understand).

Dad and I have concluded that he oncologist takes the safe approach....he was disinterested in any experimental treatments, trials and the like. Dad and I will continue our search...we're going to try another oncologist - our aim is to find someone who is willing to go out of their way to help us find something (be it experimental or not) and be more aggressive with respec t to treatments. We really don't have any other options.

I suppose then we will consider whether a move to the United States could be considered on the basis of the trials they have going over there....hopefully Dr Hodi will get in touch, even if we could teleconference options or approachs which we could try access through Australia.

Anyway so that's my update. I'm not sure what to say to Mum at the moment...Dad and I are speechless. I had a good cry when I got back to worka fter the appointment, and trying to move on now as best as I possibly can.


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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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mclaus23's picture
Replies 4
Last reply 8/16/2011 - 7:43pm

Hi All,


My dad, Stage IV mel with mets in the adrenal glands, began ipi 5 days ago. He is in extreme abdominal pain and had night sweats last night. Dr says this is an indication the ipi is working. Has anyone here had  this experience?

He also said the tumor on his groin is slightly inflamed and sensitive to touch.


Thanks in advance for your input!


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gossteach's picture
Replies 8
Last reply 8/17/2011 - 12:05am

Seems to be quite a few people starting interferon in the upcoming weeks. Maybe we could se up a time to "chat" with those who have been through it. I've only done the chat thing once, but it might be a good way to support eachother. Any takers?

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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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Anonymous's picture
Replies 5
Last reply 9/12/2011 - 8:24pm
Replies by: Anonymous, JerryfromFauq, mother-to-be

Anyone know how Michelle is doing. I hope that things are going well for her & the baby.

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Bill G's picture
Replies 3
Last reply 8/16/2011 - 12:23am
Replies by: Charlie S, lhaley, mombase
nicoli's picture
Replies 10
Last reply 8/16/2011 - 1:28pm

I may be the newest stage 4. saturday I had trememdouspain in my side/back and within one hour was in ER.  Everyone thought it was a kidney stone, so did I cuz I had had one before.

CT showed mass on adrenil  glands which sit on kidney. Also possible lung nodules. I spent sat and sun drugged out for pain relief. Today, MRI and CT. No results yet but those who saw the ihitial reslts have no doubt. Waitig for the official word from my onc.I will cry for awhile and then make a plan.


Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Shelby - MRF's picture
Replies 13
Last reply 9/6/2011 - 12:32am

This message is in response to several questions, comments and concerns we have received over the last few days.  There are varying opinions regarding the ability to post messages and comments using the Anonymous feature.  After weighing the pros and cons again, this feature will remain in place.  This feature gives old and new MPIP users the ability to ask questions they otherwise may be uncomfortable asking.  Whether it is because of embarrassment, the desire to receive unbiased responses, or even the need (or want) to remain anonymous from children or other family members, it is important that this feature continue to be available. 

The Anonymous feature is not intended to be used as a shield from others users when making rude or hurtful comments.  The MRF has bulletin board policies and a code of conduct that all users agree to when registering on our site.  The MRF also has the ability to see who posts what, even when something is posted anonymously.  When the policies are broken, those individuals are contacted by us and appropriate action is taken.  We do our best to monitor the bulletin board and remove inappropriate material and comments and the MPIP users have helped us with this task. 

To assist us further, we have created a new email address that can now be used if you have direct issues regarding specific bulletin board posts or comments.  You can still use the Contact Us form on the website, or you may send us an email at

Please keep in mind that this board is full of strong opinions and different personalities.  This increases the chances that someone will say something that you disagree with or that you are offended by.   It is also important that you refrain from guessing who Anonymous posters are.  Because of the high number of users, there is a good chance that the wrong person could be blamed.  Thank you for your patience as we work to resolve this issue and, as always, we appreciate your comments and feedback.


The MRF 

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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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Eileen L's picture
Replies 9
Last reply 8/16/2011 - 3:57am

So a few weeks ago I posted joyously that I had stable scans again, almost four years post-Stage IV diagnosis. This weekend I noticed that I have a swelling in my right groin which I know may prove to have nothing to do with melanoma, but then again it may. First action this morning was to get on the phone with my doctor's office, I have an appointment tomorrow at 3PM. I know this is a very rapid response to my concern, but I really, really, really wanted to have him check it out today!

So because I have to research everything before I walk into my oncologist's office (that is just who I am), I am wondering what would be a reasonable course of action for him to take, given a stable CT scan two weeks ago.My onc is a generalist at Kaiser SF and he is an excellent oncologist, but not a melanoma specialist. Whenever I have a specific concern/question I pay out of pocket to see Dr. Daud at UCSF's melanoma clinic, and I am trying to get an appointment with him for later this week.

Any thoughts? Would a PET scan be next? Perhaps an ultrasound of the the right groin to see if there is actually a swollen node there? If there is, a biopsy? I may have to push my Kaiser doc to be aggressive with this one, although with the FDA approval of ipi (I will never remember the name they are now marketing the drug under) I may have better luck at getting him to order what I think needs to be done since he now has a treatment option for me!

Thanks to everyone for your good wishes after my scan results. Hopefully I can post again in a few weeks that this swollen groin think was a false alarm, but if not I am ready to fight the fight and beat melanoma down once again!!!!

Eileen L

Stage IV





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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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Lisa13's picture
Replies 21
Last reply 5/7/2013 - 2:57pm

I've been searching through past and present posts and aside from about 4 people, it seems alot of people who've had success with ipi are people with sub q's.  Now, forgive me for perhaps not knowing, but are sub q's classified as being Stage 4?  When I think of Stage 4, I think of organ involvement or distant lymph nodes.  That being said, with sub q's, you can sometimes see the ipi working because it's on your skin, but if it's in your organs, you're not aware of anything going on.  Are there many people who've done ipi which has worked on their mets internally? 

I started ipi last Wednesday and as of this morning, I've had cramping and 2 semi loose stools (sorry for the graphic visulization). I doubt very much it's ipi, but I'll probably keep track of my GI problems today and report anything funky to my Dr.


Many impossible things have been accomplished for those who refuse to quit

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