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beowulf88
Posts: 23
Joined: Jul 2012

I was diagnosed Stage 4 esophageal cancer in Jan 2012. I was going to the gym 5 days a week, ran every day and haven't had a drink or a cigarette in 24 years. I'm $8 and was the picture of health when the symptoms first started in November. After not being able to eat any solid food since December had endoscopy early January when they found the tumor. Doctor gave me 8 to 10 months. Surgery is not an option. Been doing Cisplatin and 5fu every 2 weeks since Feb. The mets to liver has gone down but my initial tumor in the Esophagus has only gotten a little smaller. At least I've been able to eat. Eggs and soups etc. They rushed to put a feeding tube in me but after 6 weeks I had them taken out. Is it the chemo or the cancer that is making me so sick? Has anyone chosen to go off the chemo and did it make you feel better? Also, I was taking the steroids on a daily basis instead of just chemo days because it was giving me energy to get through the day. The doctor made me get off them because of the side effects. Anyone else use them a bit too much, I figure if it at least makes me feel good I should be able to keep taking them, any thoughts?
I also have just started getting blotches on my skin that turn into sores, any idea if these are side effects from the chemo or the cancer? What can I expect at the end? I sometimes feel like my old self and other days I feel the end coming. I don't have the energy to go to the gym, can barely do a pushup. Any suggestions as everyone keeps telling me I need to get some exercise, which I know since I can't lift anything heavy anymore. Any suggestions to get my energy levels up? Like I said I don't normally go onto these kind of sites but looking for some help.

beowulf88
Posts: 23
Joined: Jul 2012

Thanks, that's a lot of info. I'm being treated at Sloan kettering in NY. Yes i am 48 and they give Dexamethasone with the Chemo to ease the side effects. I have kept working as I don't want to sit around and do nothing all day and the steroids were a big help with getting going in the morning. They do have the crash effect for a little in the early afternoon but they didn't cause anxiety or depression. But you do explain why I lost the muscle in my thights and upper arms.With the peg tube in my stomach what is the difference if I drink the shakes or put them through a tube? The tube is never going to be an option as long as I can drink. I lost 30 lbs since I first started having problems but have maintained my weight since starting Chemo. Don't know how since I spend 1 week not wanting to eat but load up when i can eat. I use Scandishake which is 600 calories but no protein and a couple of protein shakes per day. I take the Emend and Zofran. I use this Magic mouth wash for the sores but it doesn't seem to help. Just gets to the point in the off week of treatment where you have no desire to put anything in your mouth. Everything tastes bad and the nausea feeling is so strong no matter what pills you take. My cancer has spread to the bones already and is in the lymph nodes of my stomach as well as the liver. I wasn't surgical candidate from the beginning. For the most part I'm staying positive because there is a 3% survival rate and I could be in that group. Thanks for all the info, I will browse the articles and videos before I go for my blood work on Monday and talk to my Dr.
Thanks, Bill

beowulf88
Posts: 23
Joined: Jul 2012

Thanks, the feeding tube is a non starter for me. It was a "peg" just my personal choice not to have one. Thanks for the info. What is adderall? Is it something the doc will prescribe? I see him tomorrow so I will get some. I think the Docs have there SOP and don't deviate from it. I was told I would never be able to have any kind of radiation or surgery. As for the pain, I have an extremely high tolerance and I don't particulary like taking pain meds but I'm on a time release Oxycontin regimen and it appears to control most of it. I get a little hello from my tumor area every 15 minutes or so. Is that something your husband experiences? My tumor hasn't shrunk much since I started but it is not as active. I will definitely look into all the things you posted. Experience is the best teacher. It just seems every treatment I get more of these weird side effects keep popping up. Thanks for all the info, I will try it all and let you know.

jaycc
Posts: 130
Joined: Jul 2012

I would second the push the doctors. To give a story , though everyone is different. My husband was 50 years old, good health, EC Stage IV Adenocacrinoma, with mets to liver.Two key hospitals said non-operational, but as you can read that is occurring for EC Stage IV. He was treated with Oxyplatium, FU, and Herspitan. Had a good response for 6 months. But it was not enough beyond that point. Suggest you question surgery options and push hard to talk directly to specialist in radiation and surgery areas. If you are not talking yet to an EC Onco suggest you get yourself to one. There are good GI Onco but from what survivors had said you need an EC Onco specialist.
Be careful of words like palliative care. If you want to fight, sometimes the docs/nurses switch on palliative care or comfort on their own. This is your decision, make sure you have doctors that are following your choice.

It hard to believe on top of everything else with EC, you have to go into the doctors as the quarterback but that seems to be the way it is.

beowulf88
Posts: 23
Joined: Jul 2012

Dr said no to the adder all or any other stimulant. He said he would rather decrease the chemo dosage first. I was interested in the radiation, they gave it to your husband? I was told it and surgery weren't an option for me but I will ask him next time I see him. Again thanks for all the info it gives me some good points to argue with my doc over.

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

HI there,
My partner (43 years old) was also dx with Stage 4 in August last year. He underwent the full course of chemo and radiation...his original tumour in his esophagas as gone and has not returned. They were not going to do the radiation b/c og stage 4, but he basically demanded a curative approach, and thank goodness. we are dealing with some liver mets at present, but the whole eating / swallowing issue is no longer.
All the best.
steve

goty2001
Posts: 71
Joined: Jul 2012

I was diagnosed 2 weeks ago with stage IV EC & liver mets. Treatment to begin on Wed doesn't include radiation (I wonder why not?). Interestingly, in the past 3 or 4 days the symptoms (swallowing difficulties) have all but disappeared - have been enjoying great meals like they're my last ... is it common for sensitivity & soreness when eating to just disappear like that.

wr0ngway
Posts: 9
Joined: Jul 2012

Hi Bill,

I commend you for your stamina. The doses of Cisplatin knocked me down completely. I would say put all your energy into healing by resting. I read a lot of books that had been gathering dust. For a while I did have enough energy to continue yoga. Tai Chi is an excellent fitness activity that doesn't require a lot of strength.

HTH,
David

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

Hi there. I'm a Stage IV, diagnosed back in October of 2011. I couldn't swallow (which was the clue...) but radiation to the GEJ shrunk the tumor down to almost nothing, and I can eat whatever I want now.

Sadly, my cancer is now in my adrenals, my mouth, and a cluster of 4 subcutaneous tumors on my right breast area. I dropped 80+ pounds, and have stabilized around 225 lbs, and although I'd like to lose more, the Doctor said, "Nope, you'll need the extra later on..."

This stupid mouth tumor is getting radiation (just started) to try to shrink it down, as at this point, this is only place I have pain, which occasionally feels like a needle or a shard of glass, having its way with my gums.

My second round of chemo (cisplatin and 5FU) didn't do anything except cause me to lose my hair and give me a terrible case of thrush, so they took me off of it, and we're now trying something (whose name I can't remember right now, but I'll put it up later). I have no idea if it will work, but we'll find out.

I don't have a j-tube either (yet) but once the GEJ tumor starts to grow again, I'll get one, because my research has shown that getting it before you are too weak for surgery is the smart thing, and later on, you'll need all the help for nourishment you can get.

The other thing I recommend most strongly is get multiple opinions from multiple doctors. A second, or even third opinion can open up a multitude of choices you never knew you had.

So, keep it up, welcome to the family, and remember we are all here pulling for each other.

--Jerry

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I've been thinking about you and am glad to see your post. Sorry to hear your mouth is still giving you pain. I hope the radiation zaps the mouth tumor to oblivion. :)
Best, Steph

beowulf88
Posts: 23
Joined: Jul 2012

Sorry to hear about the spread of the cancer. Was the cancer already spreading when you started the radiation or did having the radiation cause it to sspread? I'm looking for other ways to deal with the tumor in the esophaugus as this is the root cause of the problem. If i push for surgery will they do it just because I'm asking? How did you go about asking for radiation?
thanks, Bill

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

It seems that people with Stage iv aren't offered radiation automatically, and i dont know why. We were told it was usually associated with a 'curative' approach...but as i mentioned our experience has been really positive with raditation. James was gaging with all food types, and experienced a few episodes of chocking which was really auwful. Post radiation and the original tumour has gone, and has remained that was for months. Yes, mets are there on the liver and nodes, but at least james can eat whatever he wants.
Just our experience.
steve

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