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I need a little encouragement

Wenchie
Posts: 88
Joined: Apr 2009

I just read that idlehunters passed away and I'm devastated. We have emailed each other and more or less, our cancers took the same paths. I'm a Stage IV survivor since late 2006 but...CEA seems to be going up about 50% every month (now 76), have mets to lungs and lymph nodes. It's not good. I'm on Xeloda alone and it doesn't seem to be doing a darn thing. I got information today on Zaltrap and it looks like it's the only hope of buying some time. Has anyone tried it yet? I think it was just approved on August 3rd. Anyways, I need a kick in the pants because I'm feeling really low. Any suggestions?

smokeyjoe
Posts: 1428
Joined: Feb 2011

Well, I am here to give you that kick in the pants....I'm on Xeloda alone and hoping it's working for me....I have absolutely no side effects from it lately, so my thoughts are it's probably not having any affect on the cancer. My onc. wants me back on Folfiri. Is forfiri an option for you, I found this chemo. quite managable.

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

I had asked my onc about side effects of xeloda and she said just because I dont have side effects doesnt mean its not working - one of her lung cancer patients had no side effects from her chemo and has actually been doing way better than the ones with s/e. So... please don't give up hopes.

I have had no s/e of xeloda but my tumor seemed to have shrunk more than 50% according to radiation scan on Thursday so they are giving me a boost to lower the radiation area..

HUGS and PRAYERS sent your way ...

smokeyjoe
Posts: 1428
Joined: Feb 2011

So happy your having wonderful results from Xeloda and avastin......keep us posted as to how your doing....all positive posts are GREAT !!!!. Keep on kicking cancers "butt" .....seriously one day I think the mods are going to kick me off this site!!!! (are you allowed to say butt, ass, f....k)????

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Smokey you are funny. Thanks for the laugh :-)

Wenchie
Posts: 88
Joined: Apr 2009

SmokeyJoe: I'm having absolutely no side effects from Xeloda and I don't think it's working because my CEA continues to climb. As for Folfiri, it kicked my ass! I couldn't even get out of bed. I guess it's just Jennie's passing that really snapped me into reality.

Jr2012: I haven't been on Xeloda very long and I'm just hoping to have the same results as you've had. This is the first time in 6 years that I've had "symptoms" such as an on and off cough, some pain in the back, lymphatic fluid building up, so I'm starting to panic. I thank you so much for your encouragement. How old are you Jr? You looks so young it's just hard to understand how this freaking disease is hitting people so young. I was in my mid 40's. Oh well, we just keep mixing up the drugs and as soon as something quits working, it's on to the next cocktail. Hmmm, I think I need a cocktail tonight.

Thanks guys, a martini is calling me and I'll toast to both of you! xoxox

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

Wenchie ...

I seriously hope yours is working and I will pray to God for you today - are you also doing radiation or only on chemo? also talking about lymphatic fluid building up, make sure to check your Potassium and all blood report constantly which kinda gets kicked around by the chemo...
I have done enormous research on xeloda in different forums and my uncle is also an onc altho he is not my onc but having an onc at home definitely helps with constant text and calls if anything doubtful happens. So one thing I learned is everyone's cancer is different, so please please please do not think about Jennie's passing - it will only stress you and you know stress is sooo bad for cancer...

I have been doing a lot of reading and one thing is cancer plays mind game and there is a law of attraction associated with it... so think that you are already cured ... Joel Osteen's mother was given the last few days when she had liver cancer and today she is 93 yr old - she put happy pictures all around her house and thought positive... I know in our situation there is so many emotional ups and down but I know if you try to stay positive, and focus on thinking that the chemo is working, it will be bound to work.

Also, if you can, drink aloe vera (sugarfree) everyday. Aloe vera stunts metastases and its not a supplement, its food really and wonder drug.

I will tell you to do ozone water once you are done with chemo or if chemo doesnt work. Research ozone and you can do that cuz cancer cannot survive in oxygen...

Don't give up. :)
hugs and loads of prayer -

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

We are in the same boat. I'm doing a 24/7 5f/u for 8 weeks because I've exhausted all the other chemos. I'm going to try Zaltrap in a couple weeks hoping to hy more time. I also have mete to liver and lungs. I was also upset about Jennie. Lets pray Zaltrap works for us. Jeff

glinka65
Posts: 132
Joined: Feb 2009

hang in there, this is a crazy thing we are going through, i never would have started chemo if it wasnt for maybe the most wonderful lady i met on here, sadly she is gone but donna helped me so much, this is the best place with wonderful people, if i can do anything to help message me!! hang in!!! im praying for ya!!!

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Hang in there Wenchie! I'm kind of a newbie initially diagnosed stage IV in March 2011. My CEA started at 33 and dropped to 1.1 now it's up to 31.6 and I have new mets. Did a toal of 10 months of chemo (off and on) and it's almost like I came full circle. I'm on a trial drug right now and I wake up everyday glad to be alive. I actually feel really good. I was on Xeloda for about 5 weeks during my radiation and had no side effects. Stay stong and keep busy! We need you here :-)

taraHK
Posts: 1961
Joined: Aug 2003

Sorry to hear this and it's a hard time for many of us, with Jennie passing.

I think you are right, to consider new cocktails. Maybe this is something you can discuss with your onc. There are new drugs and combos appearing out there all the time.

For what it is worth, I am currently on GOLF (Gemzar plus 5FU + leucovorin) -- plus Avastin. I have bone mets. Seems to be working -- mets are either shrinking or stable. I might switch to Gemzar plus xeloda plus Avastin --

Hang in there!

Good luck

Tara

steved
Posts: 836
Joined: Apr 2004

I do think one of the sad side effects of sites like this is that we surround ourselves with people struggling with the same illness and identify strongly with them- unfortunately that means when we lose some one it feels a little like losing a part of ourselves and truly forces us to face our own mortalities. In truth, whilst that is so hard and challenging, it is also an important part of accepting the hard truths about this illness. However, it doesn't mean that your own path is destined in the same direction.

Pleased to hear zaltrap is now licensed and availbale- it isn't yet here in the UK but we tend to follow close behind the States. That and regorafenib I think will be significant advances for all of us- there hasn't been truly newly drugs like this come out in bowel cancer for a long time. IT will be great also to learn about the benefits these drugs have for people as they are used earlier in the illness process. I do think they genuinely bring new hope.

ALlow youself to mourn Jenny's passing but don't allow your mind to wander down those unhealthy paths that assume your own journey is inevitably heading in that direction. Yes, we are all battling against death but we are also all living our lives and it is that which needs to be our focus.

Enjoy today,
steve

Lizaz
Posts: 2
Joined: Aug 2012

I am very new and just join this site. Diagnosed with cancer three days ago. Just started to read posts and other info and am overwhelmed of course. I found your post most powerful - thank you so much for saying what you did. Made my morning.

Lizaz
Posts: 2
Joined: Aug 2012

I am very new and just join this site. Diagnosed with cancer three days ago. Just started to read posts and other info and am overwhelmed of course. I found your post most powerful - thank you so much for saying what you did. Made my morning.

tootsie1's picture
tootsie1
Posts: 5016
Joined: Feb 2008

I hope you're feeling less down now.

*hugs*
Gail

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