I'm terrified

I'll find out more today when I see the oncologist.  Are mets the liver an automatic death sentence?

OK, apparently so.  I met with my oncologist today.  He said surgery is not an option.  He scheduled me for a port for chemo, another CT scan, and I start chemo tomorrow.  Once a week, all day for four weeks.  He said we would take another CT then and see where we are.

He said he thinks there is about a 50% chance of putting the cancer in remission with the chemo.

I'm certainly going to get a 2nd opinion, and I'm really interested in a doctor that likes liver surgery as an option.  Are there any like that?  Any success stories out there?

Mark

Hi Mark-Husband was diagnosed at 49 with adenocarcinoma and lung mets. Did chemo and radiation, knocked down lung mets, shrank tumor, did surgery (Ivor Lewis/lung resection), have had several recurrences of lung mets. It's been quite a road. We practice a form of energy healing called tongren and there is a group of people in Maryland who meet for "guinea pig class". Husband has been a guinea pig over a year where we live in Massachusetts (and through conference phone calls recently) , through chemo, surgeries, good times and bad. I know it seems strange, but he has done really well with this energy work along with his traditional treatment. His oncologist frequently is baffled and surprised by the twists and turns we have taken over the past two+ years. There has been interest at Dana Farber and Harvard Medical, and I've personally seen people's cancer vanish on quite a few occasions now, with their dr.s left scratching their heads. I always say we have nothing to lose by going out on a limb with this cancer. My own experience of tongren at this point is that I feel more vitality and life force than I have in years, although I am rarely a guinea pig myself. I tell my husband it's kind of a shame because he's had cancer and it's beaten him up a lot, and I just feel like I'm getting younger and healthier at this point. Life just isn't fair.

Please tell me more about this "guinea pig class."  At this point, if you told me to stand on my head and play castenetes with my toes I might give it a try.

I responded privately about guinea pig class, but also mentioned Lois Dickerman whose husband had liver mets I believe. You can contact her by going to ECAA (Esophageal Cancer Awareness Assoc) website. There is a section on lower right side of homepage that says they will answer questions. If you click there it takes you to page with directors, and there is a link there to contact her. She might have some good information for you because I know Dick responded very well, and I believe she said when he did Terrasphere it was as an experimental procedure. Again, good luck with it all. 

Mark,

  Please put on your boxing gloves..surgery is not an option NOW....My Dad has adneocarcinoma..just diagnosed in Dec.  ...Surgery is not an option for him NOW, but down the road it may be...as it could be for you...

Please know you have a support group here, of people who know and understand....They have been wonderful for me...and they will be for you..

Keep your chin up...and your gloves high...and throw out a few left hooks of your own...Round one... cancer gave you a blow...Round 2..My Money is on MARK.

Bless you,

Angie

Hey, how did you know I'm right handed, but a natural lefty?

Seriously, thank you for your thoughts, my emotions seem to be on the biggest roller coaster in history the last week, and your words brought a tear.

I'm trying to remain positive, and focused.  The first round of chemo was yesterday, so I'm waiting to see what side effects take hold.  Truth be told, I don't really care about side effects, if it's working bring it on.

The Oncologist seems to think that the liver mets are the real problem, even though it's esophageal cancer, so that's where I'm focused I guess.

God bless you all for your support, and please keep writing to me, it makes a ton of difference.

Love to all,

Mark

 

On 3/26/2008 MarkInMaryland wrote:

Hey, how did you know I'm right handed, but a natural lefty?

Seriously, thank you for your thoughts, my emotions seem to be on the biggest roller coaster in history the last week, and your words brought a tear.

I'm trying to remain positive, and focused.  The first round of chemo was yesterday, so I'm waiting to see what side effects take hold.  Truth be told, I don't really care about side effects, if it's working bring it on.

The Oncologist seems to think that the liver mets are the real problem, even though it's esophageal cancer, so that's where I'm focused I guess.

God bless you all for your support, and please keep writing to me, it makes a ton of difference.

Love to all,

Mark

 

Iam so sorry to hear of your cancer,I can remember feeling like I was in black hole when I found out I had stage 4 colon cancer.Always remember to be the captain of your own ship,DONT be afraid to ask questions or to not believe what they say! I was told I had only 3-6 months and its almost 4 years later!!!! As far as side effects they dont always show up right away,I found the best way is to have the docs tell someone else the side effects(,the mind is a powerful thing,I know the way i was feeling back then ,I would of been looking for EVERY darn side effect even if it was not there because I was so afraid of the unknown) this way you dont look for them but the person they told the side effects to can tell you if what you feel is normal.Ithink I had far less problems when I was not waiting or looking for them!!! I also found out everyone thinks they are an expert,they mean well,but only your drs and you know whats best.Listen to what others have gone through and pull from that.Keep your since of humor even when your terrified!! Ask others that have gone through it as you go into your treatment I found they, not the docs can really tell us what to expect,God bless and I wish you well.

Dear Mark,

I had EC in 2004 and there was a guy in the room next to me that had EC with Mets to the Liver.  With my situation they did the surgery first and chemo and radiation after,  With him they did chemo and radiation first and actually removed some of his liver then did the esophagectamy later.  I don't know how he did, but the key is to get to a hospital that does a lot of these surgeries. I was at Duke Medical center in Durham NC. Good luck.     Keep us posted.  You will be in my prayers.

Gerri                                                    

Hi Mark-Make sure you take your anti-emetics even if you don't know you need them yet. You're young like my husband was, which is supposed to make CINV (chemo induced nausea and vomiting) worse. If you can stay ahead of it and not let it take hold, you will be way better off.  If you have just zofran, it works much better in combo with Emend (zofran alone never got it for us, unless it was because we lost momentum before we ever really got started.) They're very expensive, so if you don't have prescription coverage, there are programs through the drug companies for income eligible people. Suya