[Updated Metastatic - Mlignant Melonoma, Not Lung Tumor]

[heathpack]

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

 

[Zac495]

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

 

[heathpack]

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

 

[Passepartout]

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

 

[Kay H]

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

 

[LisaH]

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...

 

[falmouth3]

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

 

[chellej]

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

 

[heathpack]

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

 

[AKE]

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.

 

[Jestjoan]

This site finds best doctors and hospitals

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

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

 

[puppymommo]

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.

 

[stugy]

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

 

[AnnaS]

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.

 

[aliikai2]

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

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

 

[AKE]

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.

 

[heathpack]

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

 

[SDKath]

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.

 

[ada903]

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

 

[MuranoJo]

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.

 

[AnnaS]

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.

 

[Clemson Fan]

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.

 

[Clemson Fan]

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.

 

[Tia]

Interesting, always so much to learn here on TUG.

Best wishes for heathpack's cousin.

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

Sorry to hear the news.

 

[heathpack]

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