# [Updated Metastatic - Mlignant Melonoma, Not Lung Tumor]



## heathpack (Dec 26, 2011)

My 49 year old cousin had a seizure yesterday.

Head CT showed what they thought were 2 brain masses.  Chest rads were taken, which showed a lung mass.  Brain MR was performed, which actually showed 3 brain masses, the brain masses are in the 1-2 cm size range, the lung mass on rads in 2-3 cm in size.  The likelihood is that the lung mass is the primary, and the brain masses are mets.

She had a chest & abdomen CT today, don't yet know results of those.

She is a life-long smoker, docs are most worried about non-small cell lung cancer.  They say if thats what it is, there is no point in chemo & they will just irradiate the brain mets- not sure if they are thinking of palliative vs definitive radiation.  (I am 2000 miles away.)

Obviously we need to get the remaining results of the staging process and then they will do the biopsy so we should have more definitive info in 4-5 days.  However, I am a little concerned her docs are writing her off.  Would like to have our ducks in a row if a second opinion is necessary.

She is in Albany, NY, about 4 hours from NYC & Boston.  Sloan Kettering & Dana Farber are the obvious options for 2nd opinion.  But does anyone know of a center that is specifically on the cutting edge of lung cancer tx?

It's never a good time to die, but she is a single mother with a 14-year-old son.  Even 5 years from now would be way better.

H


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## Zac495 (Dec 26, 2011)

Oh my gosh. I am so sorry to hear this. I have no response to your question- only my well wishes and concern.


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## heathpack (Dec 26, 2011)

Zac495 said:


> Oh my gosh. I am so sorry to hear this. I have no response to your question- only my well wishes and concern.



Thanks, it is appreciated.

H


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## Passepartout (Dec 26, 2011)

heathpack said:


> She is a life-long smoker....
> 
> ....I am a little concerned her docs are writing her off.  Would like to have our ducks in a row if a second opinion is necessary.
> 
> It's never a good time to die, but she is a single mother with a 14-year-old son.  Even 5 years from now would be way better.



I am terribly sorry for your cousin's diagnosis. It's hard to imagine that it's entirely unexpected. My step father died of this same disease- likely brought on by the same behavior.  It's not a pleasant way to go.

I wish her a hopeful second opinion at best and peace if that's not possible.

Jim


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## Kay H (Dec 26, 2011)

How sad.  I wish her the best.  It is nice that you are trying to get help for her.


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## LisaH (Dec 26, 2011)

So sorry to hear...Xalkori was FDA approved this past Aug for CERTAIN type of NSCLC. I know the key scientist for this drug discovery at Pfizer. Very proud of her...


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## falmouth3 (Dec 26, 2011)

I hope it's treatable.  I work with someone with some type of class IV lung cancer.  She's been treated and is back at work.  Some of her tumors have disappeared and others are greatly reduced.  I don't know how much longer they think she will be in partial remission, but any time is precious.

I wish the best for your cousin.

Sue


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## chellej (Dec 26, 2011)

Houston Medical center has lots of cutting edge research.

Don't know anything about your cousins type of cancer but would sugest you look into UT/MD anderson.  They have the proton therapy center

http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/index.html

Memorial Herman has the Gamma Knife (specifically brain tumors).

MD anderson would be a good place to start


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## heathpack (Dec 26, 2011)

Thanks everyone.  Today's CTs showed mets in liver and adrenal as well as brain.

We will know more once biopsy is done, but right now things look bleak indeed.  She feels fine right now, so that is something at least.

Will continue to investigate treatment options, I can't see her traveling too far, though, unless it is for some sort of extraordinary treatment.

H


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## AKE (Dec 26, 2011)

I think that you have to be realistic here. Lung cancer is generally deadly and long term survival  rates are not good.  My MIL had non small -cell lung cancer (heavy ex-smoker who had quit 10 years prior). I did a lot of research on it and the prognosis, no matter which study, ranged from 3 months to 5 years.  In her case she lived less than a month after diagnosis.  She considered chemo and radiation but the quality of life versus the additional months that it would have provided was marginal at best so she decided againtst it. Be aware that your cousin may literally fade away very quickly - my MIL went from a fully functioing adult living on her own to literally someone who had no energy or appetitie in less than 2 weeks and was not even capbale of walking any more than a few steps.  It is a horrible disease - there may be a miracle but those are few and far apart.  I don't want to be callous but make sure she has her affairs in order while she still has the ability to do so. If the disease goes into remission then it won't hurt and if the worst happens, then at least she had a say re her wishes.


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## Jestjoan (Dec 27, 2011)

*This site finds best doctors and hospitals*

http://www.castleconnolly.com/doctors/index.cfm

It has different levels of membership from free on up......


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## puppymommo (Dec 27, 2011)

This is so very sad, especially having a young child.  I lost my mother when I was 11, so I have sympathy for this situation.

I echo the suggestion that she get her affairs in order now while she is still feeling well. 

Another suggestion is to not wait too long for hospice care.  Many people put it off because they think it means they are going to die.  But if a doctor thinks it is appropriate, it can be so helpful.  Hospice offers many services that help not only the patient but the family as well.  If she goes into remission and doesn't need the services anymore, they just cancel it.

My thoughts and prayers are with you, your cousin and her family.


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## stugy (Dec 27, 2011)

I am so very sorry for this news.  Thank goodness she has a caring family.  I guess I am a little confused as I always thought non small cell was one of the better diagnoses.  Isn't small cell the same as oat cell which is so deadly.  
My neighbor was diagnosed the end of April with I believe non small cell. She too was a long term smoker.  They started chemo about a month later, but she did not respond and in fact the tumor got larger and she had a second in her lung when they scanned her.  
Then she started having terrible earaches  ( oh no, I thought)  She was told she had tmj and then had a grand mal seizure in her back yard.  In the hospital they determined she had brain mets.  She had radiation to both the brain and lung and one week after completing her treatments, she suddenly died.  She never responded to any of the treatments.  She quit smoking when she was diagnosed, but geez, it was too late.  
I am so glad that I quit smoking years ago.  I have a friend who smokes 3 packs a day, but she is resistant to any encouragement.  She tells me she could get hit by a car.  That would be a blessing compared to lung cancer. My thoughts go out to your cousin.  I hope her results are better than my neighbor's
Pat


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## AnnaS (Dec 27, 2011)

I am sorry to hear this. Cancer sucks.  My sister (47) was diagnosed with this last April.  She had clinical and standard chemo and radiation.  Unfortunately she was with us for less than a year (March will be a year). We knew without chemo - 3-4 months and with chemo less than a year.  She suffered in the end but deciding if one should have chemo anyway is a tough decision.

Will keep your cousin in my prayers.


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## aliikai2 (Dec 27, 2011)

*There isn't a medical treatment that will work at this point.*

With the wide spread of the disease, the DR's are going to advise pain meds and getting her stuff in order. 

They told us back in March 2008 that Joyce had 3 to 6 months to live. 
She still smokes 2 to 3 packs a day.

What we did was all the alternative cures, the Zeoloite, the oxygen Drops, the Aloe mixed with rum and honey and and all the various micro nutrients and vitamins. 

They did radiation to her lung, two different rounds, then she had that episode in Mexico where she quit breathing, long story.

She got home from that and had a seizure, they found 2 brain tumors and gave her 10 doses of radiation for those and were in the process of writing her off, when the DR said there was something, but only if there was no other active cancer.

 So they did a full body PET scan and found no other cancer.
 They in-planted 3 points of Gold into her skull and used these as the targets. 
They then used what is called Sterio-tactic radiation.
They then hit the tumors from 3 points with concentrated blasts that liquified them.
That was a year ago August and in April and August they ran PET scans and don't see any cancer.

So she is creeping up on 4 years into a 3 to 6 month life expectancy.

I wouldn't give up, I didn't and it seems to have helped. 

If you would  like to locate some of these items, email me I have most of the sites saved.

Greg




heathpack said:


> My 49 year old cousin had a seizure yesterday.
> 
> Head CT showed what they thought were 2 brain masses.  Chest rads were taken, which showed a lung mass.  Brain MR was performed, which actually showed 3 brain masses, the brain masses are in the 1-2 cm size range, the lung mass on rads in 2-3 cm in size.  The likelihood is that the lung mass is the primary, and the brain masses are mets.
> 
> ...


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## AKE (Dec 27, 2011)

stugy said:


> I am so very sorry for this news.  Thank goodness she has a caring family.  I guess I am a little confused as I always thought non small cell was one of the better diagnoses.  Isn't small cell the same as oat cell which is so deadly.
> Pat



From my research, if I recall correctly, non-small cell is more easily put into remission (I won't say curable) but the biggest problem is that it rarely shows any symptoms until the cancer is widespread.  As such a person with it usually (once again from my research) will have a shorter lifespan after diagnosis (3 - 9 months from my recollection). The other kind is not as curable but diagnosis is usually in the earlier stages and thus the life expectancy is longer (average around 5 years from my recollection but there always will be outliers in that some may live much longer and others die a lot earlier). Any MDs out there please correct me if I am wrong in my recollection of my research.


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## heathpack (Jan 7, 2012)

*Update: Malignant Melanoma*

Surprise is that the cancer wasn't what they were expecting.  It is a malignant melanoma.  No skin primary that anyone has found, but cousin will be going to a melanoma specialist at Sloan Kettering next week.

If there is indeed no primary found on the skin, then this is a rare tumor.  Treatment options are more limited than for a non-small cell lung cancer.  Somehow this leaves me a little more optimistic though- if she has something rare, at least the bleak statistics are based on a smaller number of individuals thus giving her a better chance of being an outlier.  Who knows- maybe in 5 years they will come to realize that there is a sub-population of people in their 40's who get noncutaneous melanoma and do much better with treatment?

H


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## SDKath (Jan 7, 2012)

heathpack said:


> Surprise is that the cancer wasn't what they were expecting.  It is a malignant melanoma.  No skin primary that anyone has found, but cousin will be going to a melanoma specialist at Sloan Kettering next week.
> 
> If there is indeed no primary found on the skin, then this is a rare tumor.  Treatment options are more limited than for a non-small cell lung cancer.  Somehow this leaves me a little more optimistic though- if she has something rare, at least the bleak statistics are based on a smaller number of individuals thus giving her a better chance of being an outlier.  Who knows- maybe in 5 years they will come to realize that there is a sub-population of people in their 40's who get noncutaneous melanoma and do much better with treatment?
> 
> H



Wow, I am so sorry to hear that.  My uncle died from MM within 3 months of diagnosis.  He presented with seizures and they found it all in his brain and elsewhere.  They gave him 6 weeks to live, gave him lots of chemo and radiation and he passed away very quickly.  They never found a primary for him either.  I think the prognosis is equally bad with MM than NSCLC, if not worse.  So sorry.


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## ada903 (Jan 7, 2012)

Thank you for the update, and thank you again for sharing with us.  I am so sorry and I pray for the best!


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## MuranoJo (Jan 8, 2012)

H, so sorry about this news.  

My dentist noticed a scar on my hand that was off-color and immediately asked what it was.  He said his dad was diagnosed with melanoma after they found a tumor in his brain.  In that case, they were able to track it to a skin presence of some sort, but it was obviously not something that would have normally gotten attention.  I go in for annual skin screening, as I'm fair-skinned and had a lot of sun exposure before I wised up.

Best wishes for the best possible outcome.


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## AnnaS (Jan 8, 2012)

My 47 yr. old also passed from Melanoma less than two years ago.  He was treated at Sloan Kettering also.  A neighbor/acquaintance right now is also being treated for this.  She went to Sloan - I don't think there was much they could do for her - I know she goes to PA for treatment (and everything else is done here at home).   I don't see her too often and have not spoken to her recently so have no clue how she is doing.

Cancer truly sucks.  With everything that is going on, my mother-in-law was just diagnosed with colon cancer after Christmas.  She is having her surgery this week.  It's unbelievable - one after another.

Hugs to all of you.


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## Clemson Fan (Jan 8, 2012)

heathpack said:


> Surprise is that the cancer wasn't what they were expecting.  It is a malignant melanoma.  No skin primary that anyone has found, but cousin will be going to a melanoma specialist at Sloan Kettering next week.
> 
> If there is indeed no primary found on the skin, then this is a rare tumor.  Treatment options are more limited than for a non-small cell lung cancer.  Somehow this leaves me a little more optimistic though- if she has something rare, at least the bleak statistics are based on a smaller number of individuals thus giving her a better chance of being an outlier.  Who knows- maybe in 5 years they will come to realize that there is a sub-population of people in their 40's who get noncutaneous melanoma and do much better with treatment?
> 
> H



The eye could be the source of the primary and she should have a dilated exam.

Sorry to hear the news.


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## Clemson Fan (Jan 8, 2012)

Jestjoan said:


> http://www.castleconnolly.com/doctors/index.cfm
> 
> It has different levels of membership from free on up......



These sites are complete crap!  Many of them have doctors pay to be listed on their sites as the best doctors!  Their hope is that someday they might go viral and become so popular that their form of extortion becomes really profitable.


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## Tia (Jan 8, 2012)

Interesting, always so much to learn here on TUG. 

Best wishes for heathpack's cousin.



Clemson Fan said:


> The eye could be the source of the primary and she should have a dilated exam.
> 
> Sorry to hear the news.


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## heathpack (Jan 8, 2012)

Clemson Fan said:


> The eye could be the source of the primary and she should have a dilated exam.
> 
> Sorry to hear the news.



So she has been to see a regular oncologist (ie at home in Albany).  That doctor knew about the unusual melanoma dx.  Would he/she typically do the fundic exam?  Or does she need to see an ophthalmologist as well?  Or will the Sloan Kettering melanoma doc suffice?

I know it's pretty near impossible to have a melanoma start in a non-pigmented tissue and so far no pigmented tissue has been identified as affected.  She had had CTs of head, chest and abdomen and MRI of brain.  She has 3 brain mets, one lung met large enough to be visible on rads, hundreds of small lung mets visible only on CT, and liver & adrenal mets.  The biopsy was taken from the liver mass.

I am guessing the melanoma doc will go over the entirety of her skin very thoroughly.  I am just not sure if I should be advising her to request an ophtho referral prior to the Sloan Kettering trip.

H


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## Clemson Fan (Jan 8, 2012)

heathpack said:


> So she has been to see a regular oncologist (ie at home in Albany).  That doctor knew about the unusual melanoma dx.  Would he/she typically do the fundic exam?  Or does she need to see an ophthalmologist as well?  Or will the Sloan Kettering melanoma doc suffice?
> 
> I know it's pretty near impossible to have a melanoma start in a non-pigmented tissue and so far no pigmented tissue has been identified as affected.  She had had CTs of head, chest and abdomen and MRI of brain.  She has 3 brain mets, one lung met large enough to be visible on rads, hundreds of small lung mets visible only on CT, and liver & adrenal mets.  The biopsy was taken from the liver mass.
> 
> ...



A malignant melanoma can originate from the choroid of the eye.  I would probably leave the ophthalmology referral up to the oncologist.  A fundus exam done with a regular fundoscope is OK for screening, but it really isn't sufficient to see the entirety of the retina and choroid.


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## heathpack (Jan 8, 2012)

Clemson Fan said:


> A malignant melanoma can originate from the choroid of the eye.  I would probably leave the ophthalmology referral up to the oncologist.  A fundus exam done with a regular fundoscope is OK for screening, but it really isn't sufficient to see the entirety of the retina and choroid.



As a veterinary neurologist, if I wanted to look at a fundus, I would dilate the eye & look.   What I am saying is that I don't understand how it works for humans.  If I ask the cousin and she had not had a dilated fundic exam, and no ophtho referral has been suggested (I'm pretty sure it hasn't), should I tell her to ask for one or will the melanoma oncologist be sufficeint?

H


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## funtime (Jan 8, 2012)

Something pretty simple that perhaps you have thought about.  It may be good for your cousin  to get a second opinion at a prestigious cancer center like Sloan Kettering but she really needs to be treated close to home in Albany.  I would venture that most cancer treatment centers have the "gamma knife" radiation option for the brain as well as standard radiation and chemo treatments.  And, some chemo or radiation treatments are harder on the body than others.  She should be looking at ease of some of these treatments re side effects rather than the absolute best doctor who is too far away for a very sick patient to travel to for treatment.  Funtime

PS - it takes more time to "get one's affairs in order" than one thinks as we all lead complicated lives.  It is time to get started. 

PPS - if this is open season for her health plan, she should look into getting 20,000 in life insurance coverage through them or another source - that is the maximum I believe that a person can get without answering health questions. Sometimes it is offered with checking accounts - I know Wells Fargo offers it.  Sometimes the policy only  pays out in full after two years but there is a good chance that she may beat the clock. Just one more thing for her to live for!!

PPPS - see if there is a tug like "bulletin board" or list serv for melanoma victims - especially stage 1V patients - it may be a godsend to her. Also the local hospital may have a cancer support group as well as a local cancer group or Gilda's club.  You - or her - should also contact American Cancer Society as they try to pair up a new patient with a more experienced patient.  Patients with cancer support groups tend to do better.  Besides, she will need all the help she can get - and local help at that.

PPPPS - if you decide to visit I would suggest waiting - if she has to have surgery, wait until a day or two before she gets out of the hospital if your time is limited.  If you cannot visit right now, go to Target or another store and buy some good rubbermaid or other top notch storage containers so she can start making some homemade meals and soups to freeze.


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## heathpack (Jan 8, 2012)

funtime said:


> Something pretty simple that perhaps you have thought about.  It may be good for your cousin  to get a second opinion at a prestigious cancer center like Sloan Kettering but she really needs to be treated close to home in Albany.  I would venture that most cancer treatment centers have the "gamma knife" radiation option for the brain as well as standard radiation and chemo treatments.  And, some chemo or radiation treatments are harder on the body than others.  She should be looking at ease of some of these treatments re side effects rather than the absolute best doctor who is too far away for a very sick patient to travel to for treatment.  Funtime
> 
> PS - it takes more time to "get one's affairs in order" than one thinks as we all lead complicated lives.  It is time to get started.
> 
> ...



Those are some great ideas, especially about the life insurance.  I will definately have her ask about that.  She works for the state of NY and fortunately has excellent health insurance- she can basically see whoever she wants.  She told me that her HR people have been awesomly helpful so far, it sounds like they would help her with the life insurance if that is possible.

If she winds up in a trial through Sloan Kettering, her oncologist in Albany would participate and they have already told her that most of her treatment would actually happen back in Albany.  There are very few treatment options for metastatic melanoma- basically the standard of care is "try to get into a clinical trial."

She has already met with her lawyer and redid her will.  Her house is on the market and her first ex-husband came over and put in a new bathroom last week, to make the house more marketable.  Her 26-year-old daughter (who has an awesome head on her shoulders and is an air national guard medic) has moved in with her.  She has lived in the area her entire life and has a gazillion friends and acquaintences.  Yesterday, a friend from work stopped by and said one of the officers from work wanted to come by too if it was ok (she works in the accounting dept of a prison).  The officer went through the house making of list of everything that needing doing to get the house marketable and has already sent her a schedule of which of the officers are coming when.  The receptionist at her son's orthodontoist called to let her know that she is off and Thursdays and Fridays, can take her back and forth to any appointments on those days.  Her daughter was about to get deployed to Germany, but just heard yesterday that she is being reassigned to a job 15 minutes from her mother's house and her new boss expects she will be able to work at times from home.  Her best friend of 40 years is a housewife and told my cousin that she has nothing to do for the time being other than help her out.  Suffice it to say, they have all been a little overwhelmed by the generosity and helpfulness of friends, neighbors, bosses, acquaintences.

Oh good Lord, the one thing my cousin is NOT: a support group type of person.  She is realistic and knows it will be tough.  But I can guarantee a support group would never fly with her.

H


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## DeniseM (Jan 8, 2012)

I have been through this with my mom - she died at home and we took care of her at home.  She also was diagnosed with stage 4 cancer.  

At this point, no one involved can have any idea of what an overwhelming task awaits them.  It will become at 25 hour a day job.  For her family's sake, she needs to accept as much help as possible, because if she doesn't, it will quickly become unmanageable, and overwhelming for her family and friends.   

I highly recommend that they make an appointment with Hospice right now, and discuss everything while she still feels well enough to evaluate all her options.  Most people wait too long to contact Hospice.  They should also looking into cleaning people - either volunteers or a service, and home health nurses, to fill in the gap before Hospice.  The doctor can provide a referral for home health care which will allow her insurance to pay for some or all of it.  She wants to get these pieces in place before she actually needs them.

If they can get most of the medical and house keeping chores covered by others, this will free up the family to provide love and support, which is the most important thing they can do.  We tried to do it all, and in retrospect, that was a mistake.


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## Clemson Fan (Jan 8, 2012)

heathpack said:


> As a veterinary neurologist, if I wanted to look at a fundus, I would dilate the eye & look.   What I am saying is that I don't understand how it works for humans.  If I ask the cousin and she had not had a dilated fundic exam, and no ophtho referral has been suggested (I'm pretty sure it hasn't), should I tell her to ask for one or will the melanoma oncologist be sufficeint?
> 
> H



Maybe?  She'll get the best exam from an ophthalmologist, but if the oncologist is comfortable with their exam then that's ok.  At this stage of her disease finding the primary may be a moot point.  I think DeniseM gave some excellent advice.


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## AKE (Jan 9, 2012)

It is rare but melonoma can also be internal (not just eye or any other area) with no exterior signs so you may never find where it actually originated.


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## Jestjoan (Jan 10, 2012)

http://www.cleaningforareason.org/


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## Jestjoan (Jan 10, 2012)

*I hope this is true*

"The mission of Castle Connolly Medical Ltd. is to help consumers find the best healthcare. To this end, we publish a variety of books including the "Top Doctors" series, the most popular of which is America's Top Doctors®. The top doctors who are listed in our books and on this website's directory were nominated by their peers in an extensive survey process of thousands of American doctors each year. These Top Doctors' medical educations, training, hospital appointments, disciplinary histories - and much more - are screened by the Castle Connolly physician-led research team. Those doctors who are among the very best in their specialties and in their communities are selected for inclusion. Doctors do not and cannot pay to be included in any Castle Connolly Guide or online directory."


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## heathpack (Jan 11, 2012)

*Interesting Info about treating metastatic melanoma*

I have been reading about metastatic melanoma.  For most people, there are few treatment options.  However, a small (about 6%) subset of people have a type of melanoma that responds very well to immunotherapy.  This is interesting, because that's exactly how malignant melanoma is treated in dogs- in the past 5 years, a melanoma vaccine has been developed and it is very successful, melanoma is now something a dog can live with.  In fact, just this week I saw a dog for an unrelated problem, part of the routine history was metastatic melanoma, in remission for 2 years, on melanoma vaccine.

I spoke with my personal physician, a good friend of his was in the lucky 6%- had metastatic melanoma every bit as bad as my cousin's.  3.5 years later, he is cancer-free, treatment has been immunotherapy.  He was treated at the National Cancer Institute in Bethesda MD by Dr. Stephen Rosenberg.

We will be contacting Dr. Rosenberg today.  Cousins tumor is being tested for specific mutations to see if she is a candidate for any of these immuotherapies.  Let's all hope that (on the level of her cancer) she turns out to be dog-like!

H


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## MommaBear (Jan 11, 2012)

I wish your cousin the very best of outcomes. My father's renal cell cancer with metastisis to the bone was well controlled for 4 years with use of the immune modulators. The side effects are negligible and often they can be taken in pill form. They are very expensive- one of the four my father tried was $9,000 per month.


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## heathpack (Feb 3, 2012)

*Update: Good News!*

Cousin finished brain radiation last week.  She felt so normal this week that she actually went in to work for 2 days.  She can't stand sitting arond with nothing to do all day.

She went to Sloane Kettering yesterday to see one of their melanoma docs.  She needs to email me details, bu her tumor has been tested and she has a BRAF mutation.  This apparantly means she is expected to respond to immunotherapy AND she can be treated with a new drug that Sloane was instrumental is developing.  A quick google search suggests that this might be a BRAF inhibitor, one was just approved by the FDA 6 months ago for tx of melanoma.

Prognosis is apparantly way better with this mutation.

Will post more when I get the info from her and get a chance to read about it.

H


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## heathpack (Feb 3, 2012)

Googling this, I think Sloane must have started her on Zelboraf.  Here is a blurb from a US News & World Report article:

"According to the FDA, Zelboraf's approval came as part of an accelerated review program, and was based on a single international trial of 675 patients with late-stage melanoma with the BRAF V600E mutation who did not receive prior treatment. In the trial, patients received either Zelboraf or another cancer drug called dacarbazine. The median survival time after treatment was 8 months (64 percent still living) for patients in the dacarbazine group but has not been reached for patients in the Zelboraf group (77 percent still living), the agency said.
Still, not every person with melanoma will benefit from Zelboraf, and much more research is needed, the MRA's Selig said."

Details to follow in the next few days.

H


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## pianodinosaur (Feb 3, 2012)

Sloan Kettering is a great institution.  You have our prayers.


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## Mosca (Feb 3, 2012)

That's fantastic!


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## funtime (Feb 3, 2012)

Congratulations to your cousin and to you.  Funtime


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## heathpack (Feb 4, 2012)

*Zelboraf first, then probably Yervoy*

Ok, here's the scoop on metastatic melanoma, all info very new (like within the past 6-8 months).

There is a new therapy, this BRAF inhibitor Zelboraf, that has amazing results in most patients with metastatic melanoma whose tumor has this BRAF mutation.  In the majority of patients, tumor burden shrinks dramatically-- ie, the doctors can make all those mets go away.  The medication does not seem to have major toxicity.  The catch is that the tumor typically eventually develops resistance to Zelboraf and starts to grow again, usually after 6-7 months.  There is of course investigation underway to figure out ways to keep this resistance from developing, but at this stage, drug resistance must be anticipated.

There is a second new therapy, a human antibody marketed as Yervoy.  This drug enhances the body's own immune response to the tumor.  When you look at the stats, it seems to be only somewhat better than standard chemo- 7 months survival with standard chemo versuses 10 months with Yervoy (just Yervoy alone, not in combo with other drugs).  However, hidden in those stats is that the fact that some patients respond extremely well to Yervoy.  Twenty percent of patients receiving Yervoy alone are still alive at 3 years; it is reasonable to expect a better survival rate in patients treated with Yervoy in combo with other treatments.  Yervoy seems to be best at keeping the tumor suppressed, not at shrinking it.  The big negative to Yervoy is that it can have some unintended immune effects in the body, causing serious and even life threatening toxicity in some patients.

So the game plan is treat first with Zelboraf, then a pet scan in 2 months to see how much they've knocked back the mets.  If they get the dramatic response they expected, then start Yervoy.  The best possible outcome is to go cancer-free with the Zelboraf, then maintain that for years with the Yervoy.

H


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## JudyH (Feb 4, 2012)

Thanks for this info.  I hope I never need it, but its so good to know.


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## MommaBear (Feb 4, 2012)

I am delighted your cousin had such a good response and that she is getting such great cutting edge care from Sloan Kettering.


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## heathpack (Nov 30, 2013)

*Closure: Cousin passed away yesterday, Thanksgiving Day*

Just to give you all the final update: my cousin passed away yesterday.  She had taken both of the experimental chemo drugs mentioned unthread but eventually everything failed and she came off chemo.  They had given her 6 months to live originally but she made it almost 2 years.  She entered hospice last August.  They thought it would be 1-4 weeks, but she lived another 4 months in the end.  Pretty good quality of life until the last 7-10 days, I'd say.

When we were kids, there were four of us cousins who ran in a back.  My brother John died 6 years ago at the age of 42 after a 10 year battle with brain cancer.  He was a truly wonderful person- generous and thoughtful, well-liked by everybody.  He was a Wall St guy but was the anthithesis of the Wall St Stereotype.  Not greedy, not ruthless.  Just a great job for someone who liked math, statistics, and live action.  Sometimes it surprises me how acutely I miss him still.

Now Laurie is gone.  She was the oldest, the leader of the pack.  Smart, practical and tough, she ran a tight ship, raised two great kids.  She stayed in her hometown and had an incredible circle of friends- it always made me a little wistful- I've moved around so much that most of the people in my life I've known for 5 years of less.  She wove for herself a very rich tapestry of friends and family, richer than my own.

I never imagined that our little pack of wild things would be reduced so before we were even 50.  You have one vision for how your life will play out when you're young and it's surprising how different it turns out to be.  Ah but that's life.  We grow up, we change, we move apart, then we start to lose each other to illness and death.

So here's a TUG toast to my cousin Laurie, may she remained cloaked in that tapestry she wove for all eternity.

H


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## NKN (Nov 30, 2013)

So sad for your loss.  Remember the fun times .


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## AnnaS (Nov 30, 2013)

I am sorry for your loss.


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## SmithOp (Nov 30, 2013)

Our condolences on the loss of your cousin.


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## vacationhopeful (Nov 30, 2013)

Cousins can be as close as a sibling but without having to share them with your parents. 

Sorry for your cousin's passing.


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## SueDonJ (Nov 30, 2013)

heathpack said:


> … may she remained cloaked in that tapestry she wove for all eternity.
> 
> H



These words of yours are beautiful, truly.  For whatever reason they've really touched me.

I'm sorry for your loss, H, and hoping you find peace in your grief.


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## klpca (Nov 30, 2013)

I am sorry to hear of your cousin's passing. Your words are a beautiful tribute to her. Please accept my sincere condolences.


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## Pat H (Nov 30, 2013)

I'm so sorry for your loss. You have my deepest sympathy.


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## MuranoJo (Nov 30, 2013)

What a touching tribute, H.  So sorry to hear of your loss.


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## Jestjoan (Dec 1, 2013)

My sincere condolences.


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## Kay H (Dec 1, 2013)

It sounds like you were very close to your cousin and I am so sorry for your loss.


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## JudyH (Dec 1, 2013)

I never had family ties like that.  What wonderful memories for you to have.


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## rickandcindy23 (Dec 1, 2013)

Sounds like you have a very special relationship with your cousins.  I envy you that.  Those memories are going to be your comfort.  I am so sorry your cousin's life ended so young.   We are not supposed to die so young.  

We lost my stepsister in August to liver cancer.  Rick and I were on Kauai and couldn't be there for the family.  She was almost exactly my age, just 8 weeks older.  We knew each other all of our lives because we were also cousins.  Loved her like a sister.  She and I grew especially close.  Yeah, it's a soap opera.


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## Rose Pink (Dec 2, 2013)

heathpack said:


> Now Laurie is gone. She was the oldest, the leader of the pack. Smart, practical and tough, she ran a tight ship, raised two great kids. She stayed in her hometown and had an incredible circle of friends-.... She wove for herself a very rich tapestry of friends and family, richer than my own.
> ........................................
> So here's a TUG toast to my cousin Laurie, may she remained cloaked in that tapestry she wove for all eternity.
> 
> H


That was so beautiful!  It made me cry.  Hugs to you.


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