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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Teodora's picture
Replies 14
Last reply 5/31/2011 - 7:04pm

Hello everyone,

I am new to this forum where no one wants to be, but we all found oureselves on .I hope to find some advice and support troughout what seems to be a very  lonely journey due to the rarity of this desease.

Here is a brief history of it:

In June during a family  trip/me and my husband/ to my native country of Bulgaria I  suddenly started bleeding:the bleeding was  spontaneous and intense with no previous pain or any other symptoms .On the second day they rushed me into the ER where where they immediately  performed emergency procedure to clean me up.The doctor said I seem to have a cyst on my uterus  that could be giving me problems further down the line and he  suggested hysterectomy at some point as a precaution measure.We barely made it back  home to the US, when the  next month I had another massive bleedig:a life saving hysterectomy was performed to removed my uterus with what showed via ultra sound to be a fibroid attached to my utterus and cervix.

I merely made it because my haemoglobin levels hit the critical 6 number  where I needed blood transfusion.One week after the surgery,still weak and exausted they called us in and gave us the devastating news: the tumour was malignant melanoma, which I never heard of/on the uterus/.They doc didn't sound  very hopeful, he said is a very rare and aggressive kind of cancer and he gave me no more than few months to live.No need to say we were shocked and devastated and tottaly blown away;I was preparing to go quetly.

Amazingly, the subsequent CAT scan didn't show anything.At this point I was referred to an ovarian cancer oncologist at the Maine Medical Center in Portland, Maine.The PET scan  they did  in August 2010  came back clean. Everybody was totally puzzled.I had a second surgery with my doctor to remove tissue and  lymph  nodes-the biopsy came back negative for cancer.My second PET scan 6 weeks ago  came back clean too.Anyway the pap smear my doctor  made on the same day we were discussing the pet results   showed  up some suspicious cells.I've  had a  biopsy 20 days ago and the result came back  positive for melanoma again.Luckily it was a very, very tiny spot on the top of my vagina near the surgery that was just taking a root, around 1 mm big.The oncologyst said she we were lucky to find it  at  all.They presume this were few cells from the original tumour that started  growing there .They didn't see anything else,she said my vagina looked pink and clear  except for that little spot with a ring of inflammation around  it.I am about to start 5 weeks of radiation to secure the area from any residual melanoma cells, also I have been referred to an oncologist  to discuss possible further  treatment.I did a lots of research on the Internet and I am dreading they will offer me Interferon/ or wait and watch/: I have a history of major depression on and off  and I have  asthma/breathing problems, sometimes experiencing  panic attacks, controlled by Xanax.I've heard this treatment is definately No No for people with history of  psychiatric  problems.Also I have almost zero tolerance to med's side effects with even simple over the counter meds making me sick with vomitting and nausea, like drammamine, allegra,doxycicline .Interferon  sounds like a very toxic treatment with minimum effectiveness so I already  pretty much  made my mind p that  I am going to opt out of it.Also I read radiation is not very effective on melanoma as they say melanoma is often deemed  radio resistant.

I  contacted Dana Faber Center in Boston and required  expert consultation on possible treatment options:they haven't come back to me yet.

Any advices/recommendations?I know it varies individually from person to person and  that is my main worry.Ho do we know what will work  best for us and what course of action to take? 

Thanks  to everyone that will come back to me with any advice,

God Bless,

Teodora

 

 

 

 

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debandmike's picture
Replies 2
Last reply 5/31/2011 - 6:47pm

My husband, Mike is going to attempt to return to work tomorrow after 6 wks. off work and his first series of IL-2. He is still a bit under the weather but wants to try returning to work. He was wondering how long other patients took after IL-2 treatments to return to "normal?" He will have a scan on June 17th, results of scan June 21st and than more than likely back for another round of IL-2 in July.

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JerryfromFauq's picture
Replies 2
Last reply 5/31/2011 - 4:23pm

LONG and Interesting Article which will have running on-line updates.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257

Abstract:
While advanced melanoma remains one of the most challenging cancers, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapeutic decisions. Genetic analyses of melanoma have uncovered several key molecular pathways that are involved in disease onset and progression, as well as prognosis. These advances now make it possible to create a “Molecular Disease Model” (MDM) for melanoma that classifies individual tumors into molecular subtypes (in contrast to traditional histological subtypes), with proposed treatment guidelines for each subtype including specific assays, drugs, and clinical trials. This paper describes such a Melanoma Molecular Disease Model reflecting the latest scientific, clinical, and technological advances.

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

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nicoli's picture
Replies 6
Last reply 5/31/2011 - 1:15pm
Replies by: nicoli, Sherron, lhaley, FormerCaregiver, Drew N, Anonymous

I am a little depressed and troubled by the events of this week. Been lurking and posting on this site for about 1 year now and have not seen another period of time when so many have left us or have called on hospice.

This is sad.

Nicki , Sta        ,

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

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This may be of interest, it is from The Life Extension Foundation (www.lef.org).

Given the vital role of the immune system in keeping patients cancer-free after treatment of all kinds of tumors, researchers in Rome studied immune-boosting treatments for patients with one of the most deadly and treatment-resistant cancers, malignant melanoma.31 Early and aggressive surgery has been the mainstay of treatment for this deadly form of skin cancer.32 The addition of treatment with immune-boosting cytokines such as interferon-alpha and interleukin-2 has slightly improved survival but at the cost of significant side effects.33 The Rome researchers had noted that melanoma patients have low levels of CoQ10, and reasoned that the addition of the nutrient to interferon therapy might enhance its success while reducing side effects. They conducted a three-year trial of uninterrupted treatment with low-dose interferon-alpha only, or with the addition of 400 mg/day of CoQ10 in patients with early melanoma following surgical removal of the tumors. They followed the patients all the way out to 5 years following treatment. Remarkably for such a lengthy study, no patient withdrew from the trial as a result of side effects. Most importantly, the disease progressed much more slowly in the interferon plus CoQ10-treated patients, who also had a significantly reduced rate of recurrence of the tumors than the unsupplemented group.31

Read complete article at:

http://www.lef.org/magazine/mag2008/feb2008_Coenzyme-Q10-And-Cancer_02.htm

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 5
Last reply 5/31/2011 - 12:33pm
Replies by: Gene_S, Anonymous, LynnLuc, boot2aboot

see:   http://naturalstandard.com/news/news200602007.asp

Please note that there is a difference in CoQ10 products.

The best one should have "Ubiquinol" on the label not "Ubiquinone".

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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lovingwifedeb's picture
Replies 19
Last reply 5/31/2011 - 12:07pm

My husband passed early this morning, May, 27th 2011

I want to thank all who gave me support on this discussion board when I needed to vent during the year of Bob's diagnosis. I have a lot of anger to sort through as caregiver to one beloved husband, father, brother and son who fought this battle with heart. I don't know if I will ever be able to forgive melanoma for what it's done to our family and to the heartfelt stories I have read. If I do nothing else for the rest of my life it will be to tell my husband's story to anyone who will take the time to listen to me and be warned of it's horrible dangers.

Diagnosed Father's Day, 2010, Unknown Primary
Staged at 3
Changed to Stage 4 when 1 tumor was found in Brain in January, 2011

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/31/2011 - 9:37am

Has anyone had an issue with an increase in eye floaters with their diagnosis?  I've noticed an increase (or maybe they were there before and I didn't really concentrate on them like I do now?).  I have been to the eye doctor who said things look ok and brain MRI's say things are fine. 

Guess it's just another thing to stress us out!  :) 

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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shellebrownies's picture
Replies 5
Last reply 5/31/2011 - 8:00am

Don had his chemo treatment yesterday afternoon/evening and he tolerated it extremely well. His liver function tests that Dr. Lawrence had ordered did show a drop in the high levels, but was not stable enough to earn him a reprieve on the trial, so they went ahead with the chemo.

His pain at this time is extremely well managed but is IV; the pain management team still have to figure out a way to get him this level of control with oral medications. Well, we take one step at a time, right? : )

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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sheri47's picture
Replies 6
Last reply 5/31/2011 - 7:34am

hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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Teodora's picture
Replies 8
Last reply 5/31/2011 - 3:28am

ScienceDaily (July 14, 2005) — HOUSTON - Curcumin, the pungent yellow spice found in both turmeric and curry powders, blocks a key biological pathway needed for development of melanoma and other cancers, say researchers from The University of Texas M. D. Anderson Cancer Center.

The study, to be published in the August 15, 2005 issue of the journal Cancer, but available on line at 12:01 a.m. (EDT) on Monday, July 11, demonstrates how curcumin stops laboratory strains of melanoma from proliferating and pushes the cancer cells to commit suicide.

It does this, researchers say, by shutting down nuclear factor-kappa B (NF-kB), a powerful protein known to promote an abnormal inflammatory response that leads to a variety of disorders, including arthritis and cancer.

The study is the latest to suggest that curcumin has potent anticancer powers, say the researchers.

"The antioxidant, anti-inflammatory and anti-carcinogenic properties of curcumin derived from turmeric are undergoing intense research here and at other places worldwide," says one of the study's authors, Bharat B. Aggarwal, Ph.D., professor of cancer medicine in the Department of Experimental Therapeutics.

At M. D. Anderson, for example, dramatic results from laboratory studies have led to two ongoing Phase I human clinical trials, testing the ability of daily capsules of curcumin powder to retard growth of pancreatic cancer and multiple myeloma. Another Phase I trial is planned for patients with breast cancer, and given this news of curcumin's activity in melanoma, animal studies will soon begin, Aggarwal says.

Ground from the root of the Curcuma longa plant, curcumin is a member of the ginger family. It has long been utilized in India and other Asian nations for multiple uses: as a food-preservative, a coloring agent, a folk medicine to cleanse the body, and as a spice to flavor food (two to five percent of turmeric is curcumin, for example).

While researchers had thought curcumin primarily has anti-inflammatory properties, the growing realization that cancer can result from inflammation has spurred mounting interest in the spice as an anti-cancer agent, Aggarwal says. He adds that another fact has generated further excitement: "The incidence of the top four cancers in the U.S. - colon, breast, prostate, and lung - is ten times lower in India," he says.

This work is just the latest by M. D. Anderson researchers to show how curcumin can inhibit cancer growth. "Curcumin affects virtually every tumor biomarker that we have tried," says Aggarwal. "It works through a variety of mechanisms related to cancer development. We, and others, previously found that curcumin down regulates EGFR activity that mediates tumor cell proliferation, and VEGF that is involved in angiogenesis. Besides inhibiting NF-kB, curcumin was also found to suppress STAT3 pathway that is also involved in tumorigenesis. Both these pathways play a central role in cell survival and proliferation."

He said that an ability to suppress numerous biological routes to cancer development is important if an agent is to be effective. "Cells look at everything in a global way, and inhibiting just one pathway will not be effective," says Aggarwal.

In this study, the researchers treated three different melanoma cell lines with curcumin and assessed the activity of NF-kB, as well the protein, known as "IKK" that switches NF-kB "on." The spice kept both proteins from being activated, so worked to stop growth of the melanoma, and it also induced "apoptosis," or programmed death, in the cells.

Surprisingly, it didn't matter how much curcumin was used, says the researchers. "The NF-kB machinery is suppressed by both short exposures to high concentrations of curcumin as well as by longer exposure to lower concentrations of curcumin," they say in their study. Given that other studies have shown curcumin is non-toxic, these results should be followed by a test of the spice in both animal models of melanoma and in human trials, they say.

###

The study was funded by the National Cancer Institute and the Department of Defense. Co-authors included principle investigator Razelle Kurzrock, M.D.; first author Doris Siwak, Ph.D. and Shishir Shishodia.

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The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by University Of Texas M. D. Anderson Cancer Center. 

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Gene_S's picture
Replies 1
Last reply 5/31/2011 - 2:21am
Replies by: Nebr78
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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awg's picture
Replies 3
Last reply 5/31/2011 - 12:28am
Replies by: aynw, awg, jimjoeb

Hello,

I underwent a superficial lymph node dissection (left groin) for management of Stage IIIa melanoma on May 18th. The operation went very well and thankfully the pathology came back negative. I had a total of 4 node that were removed as part of the sentential mapping 2 superficial on the RT and 2 on LT one superficial and one deep. Only the superficial node on the LT was positive.

Prior to my questions let me say that I have spoken with my surgeon and was instructed to rest until my appointment on Tue unless my condition changes.

I would like to hear from some people who have had this procedure/

My question and reason for this post is to gage the recovery time of this operation.

1. I have two drains still in place. The output of the drains is slowing down but I am noticing increased drainage from around the primary site of the drains. Is this normal?

2. As I was informed by my surgeon the location of the incision makes it difficult to heal, femoral triangle to a few inched on the abdomen (through the waistline). I am following directions and spending most of my time reclined to limit pressure on the incision. What is normal heal time for an incision in this area if all goes well and I avoid infection?

3. I seem to have some mild swelling (no redness or heat) in my upper thigh but due to the numbness of my thigh it is difficult to gage. Is this common? When does it begin to go away?

Any and all thought and comments greatly appreciated.

Thank you,

Allen

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acyr's picture
Replies 12
Last reply 5/30/2011 - 9:02pm

I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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boot2aboot's picture
Replies 17
Last reply 5/30/2011 - 7:00pm

is it JUST me or does choosing a therapy like playing darts on a dart board...you get a certain number of darts and then try for a bulls-eye...and all the while your body gets...torn down....

i am starting biochemo june 2 as adjuvant therapy and i am still questioning my decision...but clinical trials for adjuvant therapy sucks too...and delayed...i really feel frustrated with researchers right now...i almost wish they could try their own cocktails...i met some of those...researchers... and my impression is EGO MANIAC...i left one and told him he could 'play with his own life' cause he wasn't getting mine for his gold star....

it seems to me all those 'brilliant scientific types' could come up with a way to test the TUMOR instead of the PERSON for chemicals or vaccines that would be effective for the type of Melanoma...genetically speaking...

it just seems to make sense 

i am very frustrated and saddened by the comments on this board...so many people throwing the darts but no bulls-eye...it just...sucks and i am blaming ego driven researchers for this....

boots

3c

don't back up, don't back down

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