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.

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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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saraheh's picture
Replies 6
Last reply 8/9/2013 - 2:05pm
Replies by: Anonymous, POW, jeffjohn78

I was just diagnosed this week with possible Stage 1a melanoma.  It might be in situ, but they could not rule out invasion due to nests and a bunch of inflammatory cells.  Whatever that means, I have no idea.  I have a surgery scheduled next week to remove surrounding tissue from the site and then they say that I will have skin checks at 3 months.  I cannot help but think that there is something else that I should be doing or looking into.  They mentioned an eye exam, which I will do.  I also plan to see my naturopathic doctor to help make sure my immune system is in top shape and any deficiencies in nutrients can be corrected.  I just do not want this to come back.  I am thankful it is still early, but I also have a 6, 4, and a 2 year old that I want to stay healthy for.  

Anything else that I should be doing or requesting at this point?  I do not want to always be worrying that this cancer is heading somewhere in my body to rear its ugly head in a few years.  The doctors seem to think that getting this cut out will solve it and I will not have future problems.  Should I get a second opinion on the lab results?

Please help!

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Replies by: Tina D, Jim M., Anonymous

 

Hi all, I hope everyone is doing well and in good spirits.

Quick question to everyone as my web searches have been fruitless and I've pestered my doctors to no end....

A quick refresher: Stage 1a melanoma (.82mm, no mitosis, no ulceration, Clark IV). Had SLNB on right groin with three nodes given the all clear. This occurred in early Feb. 13.

Now, the question: Since mid April both of my armpits have had a constant ache. Not a pain, just an ache. The best way to describe it is to think of holding a tennis ball under your arms. I've been to my derm and my oncologist, both of which said it isn't anything. I had an ultrasound that looked fine as well. There is nothing palpable, etc.

Has anyone else experienced this? Could this be a result of my WLE and my fluid being rerouted? I've never been one to worry about illness, but since my dx, I've become a hypochondriac. Should I keep pushing for more tests?

I had a CT scan in March when I visited MD Anderson and all was clear (expect for a 6mm nodule in my groin which they assume is an inflamed node from my surgery). Should I ask MD for another CT scan? A Pet CT?

Thanks for any input.

-Nick

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Curious to know if anyone has had experience with this drug. I suppose we all will find out soon with phase 3 results coming soon, but I've been curious to know of any success or failure stories out there. I haven't heard much about it since I was diagnosed 6 years ago. Just trying to keep up with everything.

thanks

Wetterhorn

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Wetterhorn's picture
Replies 2
Last reply 8/9/2013 - 4:39pm
Replies by: Pink, DeniseK

6 years and 1 day ago I had my suspicious mole removed by the dermatologist. I guess I wasn't given the news for another week, so not really sure what "official" anniversary date counts, but needless to say, good to still be here. Been a rough road with 6 surgeries, countless hospitalizations, and a destroyed thryoid and adrenal glands due to an inflamed pituitary casued by yervoy, but also stable disease 2 years since yervoy with a small lesion on my liver.  Anyway, there were too many times that I did not think I would be around in 2013, but happy to still be here. For those that have been recently diagnosed or have been battling, keep up the hope.

Wetterhorn

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brooke's picture
Replies 5
Last reply 8/8/2013 - 8:48pm
Replies by: vivian, Anonymous, Janner, POW

Hello!

I've seen on other posts stating that some people are staged based on mitotic index. Just wondering how good a predictor of spread it is?

My husband's path report showed <1/mm2, which I'm assuming is good? Also, Breslow depth was 1mm and no ulceration. Still categorized as IIIb due to the small satellite lesion found in the biopsy. 

Just reaching for any hope!

Thanks again!

Brooke

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