Lung met questions

rrob

Hey everyone,

Haven't been posting because life has been packed. Working lots of hours and getting my younger son off to college. For a little background, dx'd in Oct 2007 w/Stage IV cc, mets to my ovaries. 2 surgeries, 6 mos of FOLFOX w/Avastin and NED since just after treatment began. My last PET in July showed a small node in my lung--4mm, so too small to biopsy. Just had a follow-up CT on Wednesday. Scan shows node now 5mm, but even worse, have several tiny spots showing in both lungs. They're too small to measure and no clear indication. Nothing showed uptake in July. So, my oncologist had me do a CEA today. My last was 1.6 which is normal for me. I will do another PET Monday to check for uptake.

I had my pity party last night and I'm better today. Still riding the rollercoaster, but at least I'm not stuck at the bottom. Man, I sure loved NED, but it is what it is. My question is this: my oncologist is talking about doing 5FU w/Avastin for treatment and talking as if it will be maintenance chemo for as long as it is effective and/or my body tolerates it. Has anyone else done this treatment and how was it? I want to continue working if possible, so any side effects, advice, information, etc., would be greatly appreciated.

Next concern. From the literature I've read, the 5FU just slows the growth of cancer cells with the goal being stability. Oxaliplatin kills the cells. According to my nurse, my doctor wants to keep the Oxaliplatin in reserve in case we need it. Does this sound like he just doesn't want to be aggressive enough or is this normal practice? I'm just having trouble wrapping my mind around this again. Thanks for listening. I really just need to hear from people who get it. Everyone is great and supportive, but nobody who hasn't heard those words really can understand completely that awful feeling of the nightmare you can't wake up from. Thanks again.

Rebecca

Sundanceh

Hi, Rebecca
I did some 5fu on the pump when I first got started.

Last year I was doing the 5fu by pill - Xeloda. We combined that with avastin.

Now, the Xeloda is supposed to keep things stable, but the Avastin is supposed to "choke off" blood supply to the tumors, so I don't think that is maintenance.

I would feel better about it if he mentioned going to the big guns with the Oxy, even though I had a rough time with it personally, but it did help my situation and 9 months out from that, I'm mostly unscathed, the collateral damage inside, who can tell but TIME itself.

Maybe he is waiting to see if things grow before starting this, but I think the war is back on now - and I would fire the heavy artillery until I could not stand it anymore.

Then the 5fu or the Xeloda and the Avastin will still be a part of the protocol.

They can always switch back to Folfiri as well if the Oxy stops working.

I feel the Avastin did work, but was glad to get off it after about 8 months or so of it...I noticed that during the treatment and for several months after the treatment, I felt my heart begin to skip beats and you would have to "catch" your rhythm again - a little scary. Not as bad as it used to be, but I find myself sometimes gulping when I breath in - the price I had to pay - onc said it was nothing, but it started after the Avastin, so that's my take on it.

Xeloda is hard on the stomach and particularly hard on the feet...left unchecked the toxicity builds up quickly with this drug and your feet will crack open and split and then peel badly.

I found a product called BAG BALM in the drug store - it is an udder cream with excellent emollient properties. Slather it on your feet liberally at least 3x a day, morning, evening and at bedtime. Put socks on over your feet to hold the moisture in.

If you start early, then the problem could be lessened or avoided - I found out the hard way so I like to help people with a heads up about it.

I was OK on the 5fu pump for some reason...the Xeloda did a number on me. I was taking between 3000-4000 mgs a day with a 14 day on and 7 day off treatment plan.

Dosages adjusted down to 7 days on and 7 days off and I finished up that way.

Nice to meet you BTW and I hope this info can be of benefit to you...I'll be thinking about you and best of luck.

-Craig

rrob

Sundanceh said:

Hi, Rebecca
I did some 5fu on the pump when I first got started.

Last year I was doing the 5fu by pill - Xeloda. We combined that with avastin.

Now, the Xeloda is supposed to keep things stable, but the Avastin is supposed to "choke off" blood supply to the tumors, so I don't think that is maintenance.

I would feel better about it if he mentioned going to the big guns with the Oxy, even though I had a rough time with it personally, but it did help my situation and 9 months out from that, I'm mostly unscathed, the collateral damage inside, who can tell but TIME itself.

Maybe he is waiting to see if things grow before starting this, but I think the war is back on now - and I would fire the heavy artillery until I could not stand it anymore.

Then the 5fu or the Xeloda and the Avastin will still be a part of the protocol.

They can always switch back to Folfiri as well if the Oxy stops working.

I feel the Avastin did work, but was glad to get off it after about 8 months or so of it...I noticed that during the treatment and for several months after the treatment, I felt my heart begin to skip beats and you would have to "catch" your rhythm again - a little scary. Not as bad as it used to be, but I find myself sometimes gulping when I breath in - the price I had to pay - onc said it was nothing, but it started after the Avastin, so that's my take on it.

Xeloda is hard on the stomach and particularly hard on the feet...left unchecked the toxicity builds up quickly with this drug and your feet will crack open and split and then peel badly.

I found a product called BAG BALM in the drug store - it is an udder cream with excellent emollient properties. Slather it on your feet liberally at least 3x a day, morning, evening and at bedtime. Put socks on over your feet to hold the moisture in.

If you start early, then the problem could be lessened or avoided - I found out the hard way so I like to help people with a heads up about it.

I was OK on the 5fu pump for some reason...the Xeloda did a number on me. I was taking between 3000-4000 mgs a day with a 14 day on and 7 day off treatment plan.

Dosages adjusted down to 7 days on and 7 days off and I finished up that way.

Nice to meet you BTW and I hope this info can be of benefit to you...I'll be thinking about you and best of luck.

-Craig

Mets
Craig,

Thanks for the info. I think we're neighbors, sort of. I live in Fort Worth and work in Dallas. Aren't you from the Metroplex? Good luck and thanks for the response!

Rebecca

Sundanceh

rrob said:

Mets
Craig,

Thanks for the info. I think we're neighbors, sort of. I live in Fort Worth and work in Dallas. Aren't you from the Metroplex? Good luck and thanks for the response!

Rebecca

You Betcha
Hi Rebecca

I am indeed - I'm in between where you live and where you work - Arlington.

-Craig

butterfly23

Hi
Hi Rebecca, I'm stage 4 colon cancer with mets to lymph nodes, had surgery, did 12 5fu treatments. About a month ago I just found out it has now spread to lungs and spinal cord. I just had 12 radiation treatments for the spine, and now I am doing xeloda, olyaplatin, and avastin. I also have about 4cm spots on both lungs with splatters of little spots in the area too. I've only had a few treatments so far. I think my dr. is adding the oxyaplatin because I have it in the spine also. I wish you well, it sure is a punch in the gut when you hear it has spread again! But we are all fighters on this site!
Stay strong!
Karyn

butterfly23

Hi
Hi Rebecca, I'm stage 4 colon cancer with mets to lymph nodes, had surgery, did 12 5fu treatments. About a month ago I just found out it has now spread to lungs and spinal cord. I just had 12 radiation treatments for the spine, and now I am doing xeloda, olyaplatin, and avastin. I also have about 4cm spots on both lungs with splatters of little spots in the area too. I've only had a few treatments so far. I think my dr. is adding the oxyaplatin because I have it in the spine also. I wish you well, it sure is a punch in the gut when you hear it has spread again! But we are all fighters on this site!
Stay strong!
Karyn

Shayenne

butterfly23 said:

Hi
Hi Rebecca, I'm stage 4 colon cancer with mets to lymph nodes, had surgery, did 12 5fu treatments. About a month ago I just found out it has now spread to lungs and spinal cord. I just had 12 radiation treatments for the spine, and now I am doing xeloda, olyaplatin, and avastin. I also have about 4cm spots on both lungs with splatters of little spots in the area too. I've only had a few treatments so far. I think my dr. is adding the oxyaplatin because I have it in the spine also. I wish you well, it sure is a punch in the gut when you hear it has spread again! But we are all fighters on this site!
Stay strong!
Karyn

You've been NED before, and you can do it again! I am Stage 4 as well, and we can all fight this together! My prayers will be with you! I am on FOLFORI with Avastin which my body is responding to really well, and the tumors in my liver have shrunk, so am sure your plan will work just fine

Hugsss!
~Donna

azsunwmn

I've been on that same boat, Rebecca
I am a colorectal cancer survivor since 2002. I had liver mets in 2006, lung mets last year and a tumor removed from my throat. I have had three rounds of treatment with Folfir(sp?), the portable pump, 3 surgeries, Oxyplatin and just about everything else they could throw at me. Anyway, just be aware that Oxyplatin is a heavy metal and it has settled in my feet which have been numb since treatment in 2006. I think my doctor overdosed me with it, but I am still here on Earth, right?

Last year, my doctor suggested that I take a maintenance chemo once a week for the rest of my life. I told her no that I wanted to be "normal" for as long as possible and take my chances with the cancer recurring. I am facing a PET scan and CEA test next week and am ready to hear whatever life hands to me. I have learned to cope with cancer and the life in front of me and I wish you all the best. If you need some encouragement, I can probably do that for you because I have been down all the roads you are about to conquer.

Carrie

rrob

butterfly23 said:

Hi
Hi Rebecca, I'm stage 4 colon cancer with mets to lymph nodes, had surgery, did 12 5fu treatments. About a month ago I just found out it has now spread to lungs and spinal cord. I just had 12 radiation treatments for the spine, and now I am doing xeloda, olyaplatin, and avastin. I also have about 4cm spots on both lungs with splatters of little spots in the area too. I've only had a few treatments so far. I think my dr. is adding the oxyaplatin because I have it in the spine also. I wish you well, it sure is a punch in the gut when you hear it has spread again! But we are all fighters on this site!
Stay strong!
Karyn

Thanks!
Karyn,

Thanks for the words of encouragement. Good luck and keep me posted on your progress. I have a PET scheduled for Monday and should have some idea of a treatment plan and when it starts later next week. It has been a punch in the gut. I feel great, really strong and healthy, so it's hard to believe I'm starting down this road again. You're right, we are all fighters here. I will stay strong and I'll keep you in my thoughts. Stay strong and fight hard.

Rebecca

rrob

Shayenne said:

You've been NED before, and you can do it again! I am Stage 4 as well, and we can all fight this together! My prayers will be with you! I am on FOLFORI with Avastin which my body is responding to really well, and the tumors in my liver have shrunk, so am sure your plan will work just fine

Hugsss!
~Donna

Donna
Donna,

I'm so glad to hear your treatments are working. I know you have a great positive attitude and you're a true fighter, both of which are really important. Thanks for the encouragement. I know I can do this, but I feel like a little kid having a temper tantrum, because I just don't want to have to do this! I hate cancer and I hate chemo and I truly am just throwing a major tantrum. Sorry. Okay, that's out of my system for the moment. I have my PET on Monday and should know later in the week what the plan will be. Whatever happens, I'm ready to fight because I am just too darn stubborn to let this crap knock me down again. I am way too busy with way too many plans for the future, so I'm planning on kicking the tar out of this nasty stuff. So thanks again for letting me know you're winning your fight. Keep me posted on how you're doing. Thanks!

Rebecca

rrob

azsunwmn said:

I've been on that same boat, Rebecca
I am a colorectal cancer survivor since 2002. I had liver mets in 2006, lung mets last year and a tumor removed from my throat. I have had three rounds of treatment with Folfir(sp?), the portable pump, 3 surgeries, Oxyplatin and just about everything else they could throw at me. Anyway, just be aware that Oxyplatin is a heavy metal and it has settled in my feet which have been numb since treatment in 2006. I think my doctor overdosed me with it, but I am still here on Earth, right?

Last year, my doctor suggested that I take a maintenance chemo once a week for the rest of my life. I told her no that I wanted to be "normal" for as long as possible and take my chances with the cancer recurring. I am facing a PET scan and CEA test next week and am ready to hear whatever life hands to me. I have learned to cope with cancer and the life in front of me and I wish you all the best. If you need some encouragement, I can probably do that for you because I have been down all the roads you are about to conquer.

Carrie

Carrie
Thanks for sharing your story. I still have some numbness in my toes, feet, and calves from my treatments with FOLFOX the first time I had chemo, so I'm wondering if that is one of the reasons my oncologist doesn't want to use the Oxaliplatin unless we have to. I'm planning on asking him some hard questions this week. I can do maintenance chemo, but I'm still planning on winning this fight and I need to know that he's going to fight with me. If he's not, I'll be finding another oncologist who will. He's been great and I really don't want to change, but I also need a team who plans on helping me beat this. When I was first diagnosed, he told me I would have to stay on chemo for the rest of my life. I think he was more surprised than I was when I was NED and he finally got on board with the idea that I might beat this. It sounds like he's fallen off the train again, but he needs to get back on because I'm not slowing down and I'm not giving up.

Please let me know how your scan and CEA turn out. I really could use the encouragement because right now I'm riding the rollercoaster big time! One minute I feel like I can do this and the next I'm sobbing my eyes out and scared to death. I hate this disease and I hate what it does to us and the people who love us. Thanks again and please let me know how you're doing.

Rebecca

jscho

5-FU
Hi, as far as I understand, 5-FU does kill tumor cells (and other cells that take up). It acts by competitively inhibiting an enzyme (thymidlate synthase, abbreviated TS) that is involved in synthesizing pyridine bases needed for DNA replication. Without these bases, the cell cycle is arrested and cells are killed.

Interestingly, the effectiveness of 5-FU seems to be linked to the level of TS expressed in the cells, as well as other factors related to how 5-FU is converted in the liver into the active inhibitor of TS.

Rest assured, 5-FU is an effective killer of cancer cells.

Best,
Jeremy

pokismom

rrob said:

Carrie
Thanks for sharing your story. I still have some numbness in my toes, feet, and calves from my treatments with FOLFOX the first time I had chemo, so I'm wondering if that is one of the reasons my oncologist doesn't want to use the Oxaliplatin unless we have to. I'm planning on asking him some hard questions this week. I can do maintenance chemo, but I'm still planning on winning this fight and I need to know that he's going to fight with me. If he's not, I'll be finding another oncologist who will. He's been great and I really don't want to change, but I also need a team who plans on helping me beat this. When I was first diagnosed, he told me I would have to stay on chemo for the rest of my life. I think he was more surprised than I was when I was NED and he finally got on board with the idea that I might beat this. It sounds like he's fallen off the train again, but he needs to get back on because I'm not slowing down and I'm not giving up.

Please let me know how your scan and CEA turn out. I really could use the encouragement because right now I'm riding the rollercoaster big time! One minute I feel like I can do this and the next I'm sobbing my eyes out and scared to death. I hate this disease and I hate what it does to us and the people who love us. Thanks again and please let me know how you're doing.

Rebecca

Got the same feeling
Hi Rebecca,
I can relate to you to the tee. I am in the same boat as you also. Mets to lungs and riding the rollercoaster of lows. I hope that things get better for you as I also have been trying to cope with this new situation. If you need someone to talk to , compare notes or whatever give me a buzz. I probably will be starting chemo soon also, folfiri w avastin. I also had bad numbness in my feet and hands from the oxyliplatin. It got a little better over time but I still feel it here and there. I used to get this zingy feeling running up my calves for a while weird huh. We need to try to stay in the moment and not get ahead of ourselves, live like the others one day at a time. If you need anything Im here for you also.
Much love to you
Donna

Paula G.

My husband did pretty good on the 5-FU pump + Avastin. He is taking a small break and will be on Xeloda + avastin. What Craig says kinda worries me because they will start him on 5 pills twice a day. Hope he can handle it. His Onc said that it is good a shinking the tumors also but the avastin cuts the blood supply. He did do 8 treatments with OXY an had a reaction to it. So 9 thur 14 was without OXY and the CT scan showed shrinkage in all tumors. Hope this helps and good luck. Best to you Paula

azsunwmn

rrob said:

Carrie
Thanks for sharing your story. I still have some numbness in my toes, feet, and calves from my treatments with FOLFOX the first time I had chemo, so I'm wondering if that is one of the reasons my oncologist doesn't want to use the Oxaliplatin unless we have to. I'm planning on asking him some hard questions this week. I can do maintenance chemo, but I'm still planning on winning this fight and I need to know that he's going to fight with me. If he's not, I'll be finding another oncologist who will. He's been great and I really don't want to change, but I also need a team who plans on helping me beat this. When I was first diagnosed, he told me I would have to stay on chemo for the rest of my life. I think he was more surprised than I was when I was NED and he finally got on board with the idea that I might beat this. It sounds like he's fallen off the train again, but he needs to get back on because I'm not slowing down and I'm not giving up.

Please let me know how your scan and CEA turn out. I really could use the encouragement because right now I'm riding the rollercoaster big time! One minute I feel like I can do this and the next I'm sobbing my eyes out and scared to death. I hate this disease and I hate what it does to us and the people who love us. Thanks again and please let me know how you're doing.

Rebecca

Roller Coaster - For Sure!
I got my CEA test results and my levels are rising (10.0) now. My PET scan showed some "hot spots" where the cancer is still suspected in my lung. My onc wants me to start Erbitux and Irinotecan again. The thing is that I have to come up with $5,000 out of pocket for my co-payment to be able to start chemo. Who has $5,000 lying around? I have applied for two different grants to help me get the co-pay. I guess I will have to just fight it all by myself if the money doesn't come through. Tough world, isn't it? It all comes down to money.

lisa42

azsunwmn said:

Roller Coaster - For Sure!
I got my CEA test results and my levels are rising (10.0) now. My PET scan showed some "hot spots" where the cancer is still suspected in my lung. My onc wants me to start Erbitux and Irinotecan again. The thing is that I have to come up with $5,000 out of pocket for my co-payment to be able to start chemo. Who has $5,000 lying around? I have applied for two different grants to help me get the co-pay. I guess I will have to just fight it all by myself if the money doesn't come through. Tough world, isn't it? It all comes down to money.

to Carrie/azsunwmn
Hi Carrie,

I just sent you a PM, which you hopefully got. I have some information for that I wanted to share in regards to your treatment and money situation. Please let me know if you get my PM message.

Take care,
Lisa

lisa42

Hi Rebecca,

I'm wondering how you're doing now, since it's been over a month since your original post here. Are you on just the Avastin and 5FU now?
In my opinion, it really isn't aggressive enough. I had a recurrence in both my liver and lungs this past summer after being on the "maintenance" chemo of Avastin and Xeloda. Xeloda is the pill form of 5FU. So, it definitely did not even keep things stable for me, but cancer grew. Not that everyone would have that happen- certainly everyone is different and many people have done fine on that. But, I don't know that just the Avastin/5FU combo would be enough to make anything go away, as you said you had concern about. When I had my recurrence, I went back on Folfiri and Avastin (Folfiri is 5FU, leucovorin, and irinotecan, which is also called Camptosar and/or CPT-11). After 4 months of doing that, my PET scan showed my liver met went away, but that my many lung nodules were just stable- no worse but no better either). I'm about to go see Dr. Cantrell in Nashville at his Neoplas Innovations clinic and will begin treatment with him. My hope is that he may have something that will make these lousy lung nodules shrink or even go away! Even if they don't go completely away and just stay stable, I think his treatment will be much less harsh on my body than the chemo is. Something to look into, if you're interested in seeking other options. The website is www.neoplas.org At any rate, if you don't seek out other options, I'd definitely talk to your oncologist about doing Folfiri and being a bit more aggressive in his approach.

Take care and best wishes to you-
Lisa

rrob

lisa42 said:

Hi Rebecca,

I'm wondering how you're doing now, since it's been over a month since your original post here. Are you on just the Avastin and 5FU now?
In my opinion, it really isn't aggressive enough. I had a recurrence in both my liver and lungs this past summer after being on the "maintenance" chemo of Avastin and Xeloda. Xeloda is the pill form of 5FU. So, it definitely did not even keep things stable for me, but cancer grew. Not that everyone would have that happen- certainly everyone is different and many people have done fine on that. But, I don't know that just the Avastin/5FU combo would be enough to make anything go away, as you said you had concern about. When I had my recurrence, I went back on Folfiri and Avastin (Folfiri is 5FU, leucovorin, and irinotecan, which is also called Camptosar and/or CPT-11). After 4 months of doing that, my PET scan showed my liver met went away, but that my many lung nodules were just stable- no worse but no better either). I'm about to go see Dr. Cantrell in Nashville at his Neoplas Innovations clinic and will begin treatment with him. My hope is that he may have something that will make these lousy lung nodules shrink or even go away! Even if they don't go completely away and just stay stable, I think his treatment will be much less harsh on my body than the chemo is. Something to look into, if you're interested in seeking other options. The website is www.neoplas.org At any rate, if you don't seek out other options, I'd definitely talk to your oncologist about doing Folfiri and being a bit more aggressive in his approach.

Take care and best wishes to you-
Lisa

Update
Lisa,

Thanks for the information. I've been following your appointment and conversation with Dr. Cantrell and I'm really excited to see what you find out. It sounds like a positive new line of treatment. I did 3 treatments, going in every Friday for 5FU & Leucovorin, with Avastin every other week. I got very sick, having extreme diarrhea and dehydration, so I skipped 2 treatments. My doctor then suggested I do treatment every two weeks. So I just did my treatment Friday and am doing okay for now. I am still working full time with the job I started in August. I actually interned with this company beginning in March, but was not a full-time employee until mid-August.

I'm really struggling this time. I am finding it hard to find the will to continue treatments. I don't understand why this is so difficult this time, but I just don't know if I am strong enough to keep feeling horrible if I've lost my hope of winning this fight. The idea of doing this long-term or maintenance is just overwhelming right now. I am doing another treatment in two weeks and then will have scans to see if this treatment is doing anything. I feel like such a failure when I think of all of the people who have fought so hard for so long against this disease, when I am just starting my second bout with it. When I went to treatment Friday, I got hooked up and had to fight not to sit there and cry. I have always been strong and a fighter, so this is just not like me.

My youngest son left for college in August, so I think I'm having empty nest syndrome combined with the shock of recurrance and chemo again. I decided not to tell my sons until I have news from my next set of scans because I don't want them to worry yet. My oldest son had such a tough time when I was initially diagnosed because both of his grandfathers died from cancer (not colorectal), so in my sons' minds cancer does not have a good ending. So until I know more, I'm just not willing to scare them and turn their worlds upside down.

My oncologist said that this is preventive chemo since we don't even know if the junk in my lungs is a recurrence. However, we all know that with stage IV, most likely it is. My hope is that this chemo will nip it in the bud (showing my age--old Barney Fife saying). If not, then it will definitely be time to be more aggressive. Lisa, if Dr. Cantrell seems like a positive course for you, I will seriously consider this treatment also. It sounds like a much more manageable treatment than some of the alternatives.

Sorry for the long-winded reply. I appreciate your checking on me. Please keep me updated on your next scans and your appointment with Dr. Cantrell. You are so strong and such a fighter that you are one of the people who give me hope. I will keep you in my prayers.

Rebecca

lisa42

rrob said:

Update
Lisa,

Thanks for the information. I've been following your appointment and conversation with Dr. Cantrell and I'm really excited to see what you find out. It sounds like a positive new line of treatment. I did 3 treatments, going in every Friday for 5FU & Leucovorin, with Avastin every other week. I got very sick, having extreme diarrhea and dehydration, so I skipped 2 treatments. My doctor then suggested I do treatment every two weeks. So I just did my treatment Friday and am doing okay for now. I am still working full time with the job I started in August. I actually interned with this company beginning in March, but was not a full-time employee until mid-August.

I'm really struggling this time. I am finding it hard to find the will to continue treatments. I don't understand why this is so difficult this time, but I just don't know if I am strong enough to keep feeling horrible if I've lost my hope of winning this fight. The idea of doing this long-term or maintenance is just overwhelming right now. I am doing another treatment in two weeks and then will have scans to see if this treatment is doing anything. I feel like such a failure when I think of all of the people who have fought so hard for so long against this disease, when I am just starting my second bout with it. When I went to treatment Friday, I got hooked up and had to fight not to sit there and cry. I have always been strong and a fighter, so this is just not like me.

My youngest son left for college in August, so I think I'm having empty nest syndrome combined with the shock of recurrance and chemo again. I decided not to tell my sons until I have news from my next set of scans because I don't want them to worry yet. My oldest son had such a tough time when I was initially diagnosed because both of his grandfathers died from cancer (not colorectal), so in my sons' minds cancer does not have a good ending. So until I know more, I'm just not willing to scare them and turn their worlds upside down.

My oncologist said that this is preventive chemo since we don't even know if the junk in my lungs is a recurrence. However, we all know that with stage IV, most likely it is. My hope is that this chemo will nip it in the bud (showing my age--old Barney Fife saying). If not, then it will definitely be time to be more aggressive. Lisa, if Dr. Cantrell seems like a positive course for you, I will seriously consider this treatment also. It sounds like a much more manageable treatment than some of the alternatives.

Sorry for the long-winded reply. I appreciate your checking on me. Please keep me updated on your next scans and your appointment with Dr. Cantrell. You are so strong and such a fighter that you are one of the people who give me hope. I will keep you in my prayers.

Rebecca

you're no failure
Hi again Rebecca,

PLEASE don't think of yourself as a failure- everyone reacts differently. The idea of starting chemo again or even having to do it long term is most definitely overwhelming. Take it one day at a time- anything more than that right now will feel like too much. That will fade in time and you'll still have your up days and your down days. It's definitely normal. You mentioned about how when you went in for chemo Friday, you just wanted to sit and cry. That's exactly how I felt when I went back for chemo the second time around. I wanted to be so strong, but I definitely didn't feel strong at that moment. You're only human- so don't beat yourself up for having very normal feelings. Even those of us who are on chemo for the long haul have our days where it's just too much to think of. You may be right when you say you're dealing a bit with the empty nest syndrome. Dealing with that at the same time as this can definitely feel like too much. If you don't feel better with all this within the week, I would talk to your doctor about possibly prescribing something to help you out with the sadness, anxiety, etc. It doesn't have to be forever. Also, find a local support group or a counselor. You don't have to go through this alone.
Know that I will be praying for you- you take care!

Hugs,
Lisa

serrana

lisa42 said:

you're no failure
Hi again Rebecca,

PLEASE don't think of yourself as a failure- everyone reacts differently. The idea of starting chemo again or even having to do it long term is most definitely overwhelming. Take it one day at a time- anything more than that right now will feel like too much. That will fade in time and you'll still have your up days and your down days. It's definitely normal. You mentioned about how when you went in for chemo Friday, you just wanted to sit and cry. That's exactly how I felt when I went back for chemo the second time around. I wanted to be so strong, but I definitely didn't feel strong at that moment. You're only human- so don't beat yourself up for having very normal feelings. Even those of us who are on chemo for the long haul have our days where it's just too much to think of. You may be right when you say you're dealing a bit with the empty nest syndrome. Dealing with that at the same time as this can definitely feel like too much. If you don't feel better with all this within the week, I would talk to your doctor about possibly prescribing something to help you out with the sadness, anxiety, etc. It doesn't have to be forever. Also, find a local support group or a counselor. You don't have to go through this alone.
Know that I will be praying for you- you take care!

Hugs,
Lisa

options
Hi Rebecca
I am stage 4 and know the confusion about treatment options; I've been at it for 3 years, four surgeries, xeloda, folfox, folfiri w/ avastin and despite the pronouncement of "cured" when they found no tumor cells in my rectal resection after xeloda, I ended up w/ two lung thoracotomies for mets. Now the question comes up.........what to do.
One thing I know for sure is that the doctors don't know for sure.
The second thing is that the scientist type oncologists at NCI cancer centers know more than the docs in private practice and "ordinary " hospitals because they are doing the research themselves. Get thee to an NCI cancer center therefore if for nothing else than a second opinion.
The third thing I know for sure is that attitude is part of the battle....read Larry Dosey's book "Healing Words" about folks who survived against all odds.
The fourth thing is that before you get any chemo or targeted therapy at all you need to have your cells tested for KRAS, Ts, ERCCI, and all the other genetic markers they have discovered in the past few years that will determine what chemo stuff will be the most effective. I had the folfox before they knew it wasn't the best for my genes.
A fifth thing is that xeloda trashed my gi tract totally and I'll never take that again
And six.....for the oxy neuropathy, take tons of vitamin B and drink your weight in pounds in ounces of water ( not tea/coffee etc) every day.......it makes a huge difference.
Go for it girl, you are a fighter and a thriver like the rest of us.
Yea Team
Serrana

maglets

serrana said:

options
Hi Rebecca
I am stage 4 and know the confusion about treatment options; I've been at it for 3 years, four surgeries, xeloda, folfox, folfiri w/ avastin and despite the pronouncement of "cured" when they found no tumor cells in my rectal resection after xeloda, I ended up w/ two lung thoracotomies for mets. Now the question comes up.........what to do.
One thing I know for sure is that the doctors don't know for sure.
The second thing is that the scientist type oncologists at NCI cancer centers know more than the docs in private practice and "ordinary " hospitals because they are doing the research themselves. Get thee to an NCI cancer center therefore if for nothing else than a second opinion.
The third thing I know for sure is that attitude is part of the battle....read Larry Dosey's book "Healing Words" about folks who survived against all odds.
The fourth thing is that before you get any chemo or targeted therapy at all you need to have your cells tested for KRAS, Ts, ERCCI, and all the other genetic markers they have discovered in the past few years that will determine what chemo stuff will be the most effective. I had the folfox before they knew it wasn't the best for my genes.
A fifth thing is that xeloda trashed my gi tract totally and I'll never take that again
And six.....for the oxy neuropathy, take tons of vitamin B and drink your weight in pounds in ounces of water ( not tea/coffee etc) every day.......it makes a huge difference.
Go for it girl, you are a fighter and a thriver like the rest of us.
Yea Team
Serrana

question for serrana
Hi Rebecca: please forgive me, do not mean to divert your post but I wanted to ask Serrana a question.

Serrana I have been on xeloda twice now. I wonder if you could explain to me what you mean by that drug trashing you GI I have some digestive questions and it would be good to compare notes.

mags