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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DeniseK's picture
Replies 4
Last reply 8/14/2013 - 1:31pm
Replies by: DeniseK, Tina D, GAngel, POW

Wow, I must really be breaking ground here.  I went to look up what the side effects could be from combining Dabrafenib and Ipi and there are no results.  There is a clinical trial being conducted with this combo but no results posted because it's a fairly new trial.  I can tell you that I don't feel bad at all, matter of fact I feel good, no side effects to speak of and the tumor on my arm is getting smaller.  I did get sunburned on Saturday pretty bad but seemed to have just about healed this morning.  

Is anyone else taking Dabrafenib instead of Z and did you take Z first?  Just wondering if you can tell the difference. 

Today is a good day!  

All my best to you all

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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JerryfromFauq's picture
Replies 1
Last reply 8/12/2013 - 9:00pm
Replies by: washoegal

 

http://www.sciencedaily.com/releases/2012/03/120308132812.htm

Could a NOSH-Aspirin-A-Day Keep Cancer Away?

Mar. 8, 2012 — The humble aspirin may soon have a new role. Scientists from The City College of New York have developed a new aspirin compound that has great promise to be not only an extremely potent cancer-fighter, but even safer than the classic medicine cabinet staple.

The new designer aspirin curbed the growth of 11 different types of human cancer cells in culture without harming normal cells, reported a team from the Sophie Davis School of Biomedical Education of The City College of New York in a paper published this month in the journal ACS Medicinal Chemistry Letters. The cancers controlled included colon, pancreatic, lung, prostate, breast, and leukemia. "The key components of this new compound are that it is very, very potent and yet it has minimal toxicity to the cells," said Associate Professor Khosrow Kashfi, the principal investigator.

The aspirin compound also shrank human colon cancer tumors by 85 percent in live animals, again without adverse effects, according to a second paper in press by the City College researchers and colleague Kenneth Olson of Indiana University School of Medicine, South Bend. Their results will appear in the journal Biochemical and Biophysical Research Communications, now available online. "If what we have seen in animals can be translated to humans," said Professor Kashfi, "it could be used in conjunction with other drugs to shrink tumors before chemotherapy or surgery."

Long the go-to drug for minor aches and pains, aspirin and other so-called non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen, are known primarily for their ability to calm inflammation. Studies in the 1980's resolved a decades-old debate on the utility of a daily dose of aspirin to cut the risk of heart attack and stroke.

More recent studies tracking regular use of the drug and other NSAIDs demonstrated their remarkable ability to inhibit the growth of cancer. "There's a lot of data on aspirin showing that when taken on a regular basis, on average it reduces the risk of development of colon cancer by about 50% compared to nonusers," noted Professor Kashfi.

The fly in the ointment has been that prolonged use of aspirin posed its own dangers: side effects ranging from bleeding ulcers to kidney failure. To resolve this, the researchers created a hybrid of two earlier formulations, which they have called "NOSH-aspirin." They used the aspirin as a scaffold to support two molecules that have been shown to increase the drug's safety and potency.

One arm of the hybrid aspirin releases nitric oxide (NO), which helps protect the stomach lining. The other releases hydrogen sulfide (H2S), which the researchers have previously shown enhances aspirin's cancer-fighting ability. The researchers suspected that the hybrid would be more effective than either of the two components alone to boost aspirin's safety and power against cancer.

"The hybrid is more potent -- and it is more potent by orders of magnitude -- compared to aspirin," said Kashfi. Only 24 hours after treating a culture of cancer cells, the NOSH-aspirin demonstrated 100,000 times greater potency than aspirin alone. "At 72 hours it is about 250,000 times more potent in an in-vitro cell culture against human colon cancer," Kashfi added. "So you need a lower amount to get the same result."

The effect of the hybrid was also far greater than the sum of its parts. Its potency was as much as 15,000 times greater than existing NO-aspirins and 80-fold more than those that incorporate H2S. The upshot is that a drug based on this hybrid would require lower doses to be effective, minimizing or potentially eliminating its side effects.

In the second study, when mice bearing human colon cancer tumors on their flanks were given oral NOSH-aspirin, the compound caused cancer cells to self-destruct, inhibited the proliferation of the cells and significantly reduced tumor growth without any signs of toxicity in the mice.

The stage is set for the development of a drug based on NOSH-aspirin. Kashfi noted that any working therapy for humans is years away, but the next step would be toxicity testing, and then clinical trials.

Dr. Ravinder Kodela and Dr. Mitali Chattopadhyay are members of Professor Kashfi's lab at Sophie Davis School of Biomedical Education and co-authors on both papers. These studies were funded by The National Cancer Institute through a subcontract from ThermoFisher, and also by the National Science Foundation.

Professor Kashfi and his colleagues will present these findings at the annual meeting of the American Association for Cancer Research in Chicago, March 31st -- April 4th.

I'm me, not a statistic. Praying to not be one for years yet.

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Scaly Armadillo's picture
Replies 3
Last reply 8/12/2013 - 1:33pm
Replies by: Anonymous, casagrayson, DeniseK

Hello. I am obessively scouring the internet for what has appeared on my left leg. I first noticed it on Thursday, August 8, 2013, when it was still rather flat. Since then it has become elevated, but the black region has remained the same size and the base of it pink. I am planning on going to a doctor tomorrow, but my question is, is it possible for melanoma to grow within three days? Could it be something else? I am almost certain I did not have any sort of growth prior to this, but I'm not 100% sure, and if I did it would have looked innocuous otherwise I would have done something about it. It is approximately 4-5mm long and does not hurt, itch, bleed, or anything like that. I've read about nodular melanomas and am incredibly scared. I'm 29 years old and grew up in Florida. 

Here is a picture:

http://tinypic.com/r/2jaj2gm/5

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Anonymous's picture
Replies 8
Last reply 1/20/2014 - 5:50pm

More newbie questions.  Wondering who the best melanoma oncologist is in the Washington DC/Northern Virginia area.  We have heard great things about Dr. Evan Lipson at Johns Hopkins.  Just wanted to make sure we go to the best!

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My family member was recently diagnosed with Melanoma.  She is very young (21) and the tumor was very agressive.  It had a depth of 4.24mm (but they did a shave biopsy so it could be even deeper), it was ulcerated and it had a mitotic rate of 9.  Her PET scan was clean, and her lymph nodes looked good during the surgery, but we are waiting for the final results.  Given the seriousness of the tumor, I think it is important that we know all the treatment options to try to prevent this from coming back.  Since we are new, I am looking into the clinical trials and interferon, but wondering if anyone here has any experience or advice for things we should look into.  Thank you so much!

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http://es.wikipedia.org/wiki/Ganoderma_lucidum

segun es uno de los componentes para el interferon y su consumo ayuda a disminuir los efectos de la radioterapia y la quimio

http://elreydelasplantas.blogspot.com/

http://es.wikipedia.org/wiki/Interfer%C3%B3n

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Mat's picture
Replies 22
Last reply 5/26/2014 - 9:43pm
Replies by: Leonardostagg, Mat, GAngel, tico1, Anonymous, Janner, G-Samsa, BrianP, Phil S, POW

Hi Everyone,

First, I want to express my gratitude and appreciation for the folks who post to this bulletin board.  I've learned so much in a short period of time from your posts.  As you know, as is often the case in life--but especially with melanoma--ignorance is not bliss.  As a result of your posts, I've felt more comfortable discussing treatment options, etc. with my doctors, family and friends.  Thank you.

As for my story, in 2003, I was 29 years old.  I had a small mole on the far right side of my chest near the right arm socket.  For the past year (probably more), it was taking on an odd shape, discoloration.  In hindsight, with the benefit of Google pictures, etc., a clear case of melanoma.  After much nagging over a period of many months (maybe more) from my parents and then girlfriend (now wife), I had the mole removed in a dermatologist's office.  (One of the reasons I had delayed (aside from youthful foolishness) is that a general practitioner had looked at the mole and said it looked "fine"--a lesson that this is not an area for general practitioners (no offense to any readers).)  A few days later, I received "the call".  The dermatologist referred me to one of the top melanoma specialists in my city (Philadelphia).  I proceeded to have a wide incision, sentinel lymph node testing, PET scan.  All were clear.  My melanoma was considered "thin" at .50mm, level 2.

For the next 9 years, I continued to see my oncologist.  The appointments were every 6 months until 2011 when I was switched to annual appointments.  I was scanned for 3 years and then we switched to chest X-rays (all of course with blood work).  The running joke with my oncologist was that I was just there to pay him my co-pay and say hello.  Melanoma was a distant memory.  I was very foolish by not being more vigilant with the mole, but I got lucky and had dodged a bullet . . . or so I had thought.

Of course, 2013 would turn out to be quite different.  I went to my routine annual appointment at the end of June with essentially only one symptom--around April, I started to develop what I thought was an under the skin-cyst on the top of my right shoulder.  My wife was 8 mos. pregnant.  We were busy.  I'm not sure that melanoma even crossed my mind.  I went to my primary care physician (different from the one mentioned above, but the same lesson still applies)--he thought it was a cyst from an in-grown hair.  However, it was on my "shoulder-bag" shoulder and was bothering me, so I went to the dermatologist--she thought it was a lipoma (a harmless fatty mass).  Even my oncologist thought it was a cyst or lipoma.  (Of course, the "cyst" would turn out to be melanoma--more on that below.)  Aside from the "cyst", two new developments at my oncologist appointment--for the first time in 10 years, I had an elevated LDH level (330) and a "spot" in my lungs on my chest X-ray.  My oncologist told me that it was "almost statistically impossible" for this to be a recurrence of melanoma.  We re-did the bloodwork to confirm--LDH level still elevated.  We did a CT scan--total disaster.  Stage IV metastasized melanoma all over the place--liver, abdomen, lungs, bone lesions, more.  

Before I move on, let me pause.  The reason I'm including this level of detail is not because I'm looking for sympathy.  I know that some readers who visit this board are Stage I, consider themselves lucky, etc.  Well, that was me (except I didn't bother visiting the board)!  You cannot be too vigilant about this disease.  In hindsight, I'm not sure what I could have done differently (aside from getting the mole removed earlier)--insisted on a periodic CT scan whether or not covered by insurance?  I don't know.  I recognize that my situation is somewhat unique in that the vast majority of Stage I patients who are clear for 10 years remain so--but there is a statistically significant portion of those folks who have a recurrence.  Be vigilant--and see the "top" melanoma specialist (not "one of the top") in your area.

Back to my story, which resumes on July 10th.  My oncologist's "plan A" was to have me screened by the NIH for one of their protocols.  I researched the TIL treatment online (thank you Bob Heffernan for your posts and your book (a great read which is available on Amazon!)).  I liked the plan, though I did switch my care over to Dr. Lynn Schuchter at UPenn (the "top" melanoma specialist in the Philadelphia-area).  Of course, it took a few weeks to get through the NIH's process.  I received "the call"--I was eligible, subject to being re-scanned at NIH.  The re-scans were a total disaster--significant tumor progression, particularly in my liver.  One small brain met.  I probably couldn't live long enough to go through the TIL process (which takes a number of weeks).  Whereas just a week or so prior, I was reviewing the "menu" of options (ipi/PD-1 trials, etc.), I now had almost none.  Fortunately, UPenn had tested me for the BRAF mutation and I tested positive for BRAF-V600E.  All of the doctors (UPenn and NIH) agreed that I needed to move immediately to a BRAF inhibitor.  (I should also mentioned that within this time frame my blood was re-tested--LDH now at 600 and most liver functions were elevated.)

Dr. Schuchter prescribed the Tafinlar-Mekinist combo (and my insurance company cooperated!).  Last Friday evening--just 8 days ago--I started on the combo.  Within 2 days, the tumor on my shoulder started to decrease in size.  By the end of the week, it was a small fraction of the size it was just a week ago.  My only other surface-level tumor--a small nodule on my left arm--totally disappeared.  Recently, I had developed liver pain/sensation.  Throughout the week, this seemed to be improving--by the end of the week, I was certain that it was improving (easier to move around in bed, pull on a heavy door, etc.).  By the end of the week, I also "felt better", had more energy, was able to work a full day without fatigue, etc.  Yesterday--just 7 days after starting treatment--I had my blood re-tested.  All liver functions are essentially normal, with LDH being only slightly elevated at 240.  In my case, so far, these are miracle drugs.  I recognize that the treatment is a "bridge treatment" and will not last, but I need a "reset" badly--and these drugs appear to be providing one.  Of course, I won't know for certain until I'm re-scanned in a few weeks.

As for side effects, I'm early in the cycle, but so far, I'm only getting joint pain (particularly in the hips).  However, this is totally manageable and a small price to pay.  For any Stage IV patient reading this--if you are BRAF-V600E positive and your tumor progression is such that other options aren't presently available, this combo seems to be a great option.  Thank you Dr. Schuchter (and her entire staff), thank you GlaxoSmithKline for developing these drugs, and thank you to all of the melanoma patients who participated in the trials for these drugs!

Please feel free to ask questions and I will do my best to respond promptly.

Very truly yours,

Mat

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Replies by: JerryfromFauq, POW

http://mct.aacrjournals.org/content/12/8/1471.abstract

Abstract

Curcumin (CUR), a naturally occurring polyphenol derived from the root of Curcuma longa, has showed potent anticancer and cancer prevention activity in a variety of cancers. However, the clinical translation of CUR has been significantly hampered due to its extensive degradation, suboptimal pharmacokinetics, and poor bioavailability. To address these clinically relevant issues, we have developed a novel CUR-loaded magnetic nanoparticle (MNP-CUR) formulation. Herein, we have evaluated the in vitro and in vivo therapeutic efficacy of this novel MNP-CUR formulation in pancreatic cancer. Human pancreatic cancer cells (HPAF-II and Panc-1) exhibited efficient internalization of the MNP-CUR formulation in a dose-dependent manner. As a result, the MNP-CUR formulation effectively inhibited growth of HPAF-II and Panc-1 cells in cell proliferation and colony formation assays. The MNP-CUR formulation suppressed pancreatic tumor growth in an HPAF-II xenograft mouse model and improved the survival of mice by delaying tumor growth. The growth-inhibitory effect of MNP-CUR formulation correlated with the suppression of proliferating cell nuclear antigen (PCNA), B-cell lymphoma-extra large (Bcl-xL), induced myeloid leukemia cell differentiation protein (Mcl-1), cell surface–associated Mucin 1 (MUC1), collagen I, and enhanced membrane β-catenin expression. MNP-CUR formulation did not show any sign of hemotoxicity and was stable after incubation with human serum proteins. In addition, the MNP-CUR formulation improved serum bioavailability of CUR in mice up to 2.5-fold as compared with free CUR. Biodistribution studies show that a significant amount of MNP-CUR formulation was able to reach the pancreatic xenograft tumor(s), which suggests its clinical translational potential. In conclusion, this study suggests that our novel MNP-CUR formulation can be valuable for the treatment of pancreatic cancer. Mol Cancer Ther; 12(8); 1471–80. ©2013 AACR.

ALSO:  http://mct.aacrjournals.org/content/12/8/1471.figures-only

I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: Anonymous, ClaudeM, BrianP, chalknpens, blden2186, Johnfdc7

I have completed the 4 weeks of IV interferon, radiation of right leg, and am starting the self injections in a week. Does anyone have any advise as to the best time of day to administer? I want and need to work so I hope to minimize side effects.

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Replies by: JerryfromFauq, wpneuma

I have completed the 4 weeks of IV interferon, radiation of right leg, and am starting the self injections in a week. Does anyone have any advise as to the best time of day to administer? I want and need to work so I hope to minimize side effects.

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Violet's picture
Replies 4
Last reply 1/2/2017 - 5:21am

My sister was diagnosed with metastatic melanoma in April 2012 . She had a limphnode surgery in her left arm. Over summer melanoma came back. and meanwhile doctors found another metastasis in her hip. She experienced four months of the most awful pains I have ever sow and she was close to die. In September 2012. Zelboraf saved her and gave her another valuable 10 months. She went back to the university where she is teaching and had almost a normal life again.

Now, the zelboraf is not working anymore. The tumor from her arm is growing fast and her oncologist recommended Yervoy and radiotherapy. We are again in a bad situation, because the insurance provider is not covering these expensive treatments in Romania. Her previous treatment with zelboraf was possible due the humanitarian campaign organized by her colleagues at University of Bucharest. Although the campaign continues, we do not have big hopes that this time it will bring enough funds to cover her treatment with Yervoy.

I spent some time looking for charity organizations and foundations that are financially assisting patients with cancer, but I found nothing for Europe.Do you know any Financial Assistance Program in Europe or any Charity Foundation granting patients in Europe too? What I have found on internet is granting patients in USA , but I did not find anything similar for Europe. If they are also active in Europe, I would like to write them and to apply for funds if she is elligible. I sow that Bristol Myers has a financial assistance program but not running in Europe, and for sure not in Romania..

Here is the fundraising campaign for my sister, please have a look : ....//media.unibuc.ro/salvam-un-profesor-salvam-generatii/second-stage-of-treatment-the-campaign-we-save-a-professor-we-save-generations-at-10-months-of-treatment  Please share the link with anybody you think is in the position to help us or to gave us a good idea about how we can access the treatment with Yervoy for my sister. Any advise is welcome!

Violeta

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Pink's picture
Replies 5
Last reply 8/31/2013 - 5:39pm
Replies by: Tina D, Pink, BrianP, casagrayson

After 6 years I have mets in my leg. I just had a Pet and brain MRI which were negative. I am seeing Dr. Zager at Moffitt on Monday to see my optinns. What treatments recommended at this point

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Replies by: Tina D, GAngel

Haven't updated in awhile, but we are back in TX and had my appointment with Dr. Papa this morning. Scans looked good. The spot on my liver is responding well. Smaller with less uptake on the PET.  I have been having issues with diarrhea for a few weeks now. Went to TX 6/13 and  he added Yervoy. I was already having some diarrhea then I assumed from the Zelboraf. Had Yervoy 7/3/13. Put in hospital 7/26/13 for increased diarrhea. turned out to be cdiff. Cleared all that up, but diarrhea still persists. Been on steriods since 8/1/13.  This trip he also decided not to continue Yervoy due to this.  Will have a colonoscopy to make sure it is not colitis. If not colitis, I can stop the steriods. Overall I feel blessed and optimistic that all is going well.

 

Becky

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Sherron's picture
Replies 13
Last reply 8/12/2013 - 1:53pm

Baby Addison Cox of Phoenix passsed away last night of Stage 4 Melanoma.  She was born with Stage 4, passing through the placenta.  Her mother has already passed away, and I read last night that Addison passed away in the arms of her Daddy....she and her mother are together once again...You can goggle it and look up the story...So very sad. I do not know if they were a member of the MPIP family or not.

Take Care,

Sherron, wife to Jim FOREVER AND ALWAYS

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Sherron's picture
Replies 1
Last reply 8/9/2013 - 4:12pm
Replies by: Tina D

Baby Addison Cox of Phoenix passsed away last night of Stage 4 Melanoma.  She was born with Stage 4, passing through the placenta.  Her mother has already passed away, and I read last night that Addison passed away in the arms of her Daddy....she and her mother are together once again...You can goggle it and look up the story...So very sad. I do not know if they were a member of the MPIP family or not.

Take Care,

Sherron, wife to Jim FOREVER AND ALWAYS

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