new member with question about treatment

[juliej]

Hi, everyone,

I was diagnosed yesterday with Stage 4 rectal cancer. Needless-to-say, I'm terrified, especially since I have no history of cancer in my family. I've always been one of those "health nuts" who ate right and exercised daily. I've never even been in a hospital before and didn't even have a primary care physician because I was never sick. In fact, I feel physically great right now, even though, emotionally, I'm a complete wreck.

My question is about treatment. The initial diagnosis was Stage 3 so the surgeon discussed the "standard" treatment with me: 7 weeks of radiation/chemo, followed by surgery (including an ileostomy), then 3 months of chemo, then reversal of ileostomy. Then they did a CT scan yesterday and changed it to a Stage 4.

They said there are 2 spots on the liver (one on each side) and 2 spots on the lungs (one on each lung). Now they say I won't have surgery because even though there are just a few spots, they are on opposite sides of the liver and lungs. They're just going to give me chemo drugs - either Folfox (using pump) and Avastin -- or Xeloda, Oxaliplatin, and Avastin. Does that treat the original tumor plus the spots? I thought only radiation took care of the tumor. Is this standard treatment for Stage 4? If the chemo shrinks the tumors, they might consider surgery if there is a single spot remaining. My CEA is only 7.4 and I don't have any lymph node involvement. I'm worried they are giving up on me. Please let me know there is hope for Stage 4's.

Thanks for reading this,
Julie

[gofisch]

I know this is a huge shock for you. It is for all of us. It's a lot of information to absorb. My first suggestion is to bug your oncologist and ask why they are taking this course instead of radiation/surgery. You really need to not be shy about asking a zillion questions. Walk in there with a list so you don't forget. Call during the day and ask the nurse to give you an answer. It's what they signed up for when they decided to work with cancer patients. Panic is part of our symptoms! Also, this is the best advice a friend who had cancer gave me: ask for Ativan. It is an anti-anxiety drug. It will help you sleep and help with the panic. I don't know anyone who has had cancer who did not take ativan.

I was stage III, but I do now that the reason they do radiation/chemo BEFORE surgery is to shrink the rectal tumor before surgery. Pelvic surgery is really tricky, and they want the tumor to be as small as possible before they go in there so they reduce the risk of rogue cells getting away during surgery.

Folfox should definitely shrink the rectal tumor, as well as the other spots and anything microscopic hanging out in your blood stream and your lymph system.

It doesn't sound like they are giving up on you. My uneducated guess is that they want to us the Folfox to aggressively get at your lung spots so they don't grow. Maybe the 5FU alone is not as great for metastatic tumors, I don't know. But your rectal tumor should not grow during this process, and if it does not shrink, they can do radiation after and then surgery.

Good luck, and keep us posted. Deep breaths. And we are all here to support you.

Frances

[SkiFletch]

Well Julie, you won't be the first, nor the last stage IV patient to get chemo instead of surgery. The issue at hand is that because you already have mets, you've certainly got cancer cells in your blood circulation. If you go through chemo/radiation, then are off treatment for 6-8 weeks healing for surgery, if the chemo was unable to kill all your circulating cancer cells, they'll just setup more mets during your 6-8 week break before, if not the ~4 weeks post surgery you'll have to wait for more chemo. That's too much time that you unfortunately can't afford at the moment.

Going on active chemo treatment now is really your only hope for beating this thing. Unfortunately while the success rate isn't the best for someone in your situation, there are plenty of folks around this board who have received an even graver diagnosis that are still around today many years later. It CAN be beat, but you've gotta go on chemo for now. If the chemo works well and your mets can be reduced, the primary tumor will also be targeted, so don't worry there.

I hope your treatments can be as effective as possible and make sure to keep the questions coming

[skipperx]

Julie,

I have the exact same stage IV as you with liver mets. My treatment is 12 cycles of FOLFOX with Avastin; I have done 6. After the 12 we will see what is the next course of action, which will depend on how the tumours respond to chemo. My CEA was 640 , now down to 150.

PM me if you want more specific info. The DX and start is very,very difficult. It will get easier!

Cheers, Skip

[juliej]

Hi, Skip,

I tried to PM you, but it said I wasn't allowed to yet. Maybe because I'm a new member? Could you try PM-ing me?

I'd like to know if you're using a pump with the FOLFOX, and if so, how it's working out for you.

My CEA is really low. It's 7.4. Does that mean I have the type of tumor that doesn't emit that kind of marker? If so, how will they know if the tumors are responding to chemo except with a CT scan?

Cheers,
Julie

Julie,

I have the exact same stage IV as you with liver mets. My treatment is 12 cycles of FOLFOX with Avastin; I have done 6. After the 12 we will see what is the next course of action, which will depend on how the tumours respond to chemo. My CEA was 640 , now down to 150.

PM me if you want more specific info. The DX and start is very,very difficult. It will get easier!

Cheers, Skip

[juliej]

SkiFletch,

Your explanation makes sense. I'm also very happy and relieved to hear there are folks on the board who've received an even graver diagnosis and are still around many years later.

My initial visit with the onc was frightening. She talked about how much I wouldn't be able to do, less quality of life, etc. I'm in great health now so it was quite disturbing. I know they can't do a pollyanna on you, but I'd appreciate if they just said, "yes, some people survive this and there's no reason to think you can't be one of them."

I noticed you were diagnosed stage 4 and on Folfox. Did you use the pump? Were you given a choice between Folfox and Xeloda? Do you think one if more effective than the other - or is just pills versus pump?

Did you stay working on Folfox? Or did it make you too tired? I know the effects are different person-to-person, but I'm hoping I can stay working.

Thanks for your response,
Julie

Well Julie, you won't be the first, nor the last stage IV patient to get chemo instead of surgery. The issue at hand is that because you already have mets, you've certainly got cancer cells in your blood circulation. If you go through chemo/radiation, then are off treatment for 6-8 weeks healing for surgery, if the chemo was unable to kill all your circulating cancer cells, they'll just setup more mets during your 6-8 week break before, if not the ~4 weeks post surgery you'll have to wait for more chemo. That's too much time that you unfortunately can't afford at the moment.

Going on active chemo treatment now is really your only hope for beating this thing. Unfortunately while the success rate isn't the best for someone in your situation, there are plenty of folks around this board who have received an even graver diagnosis that are still around today many years later. It CAN be beat, but you've gotta go on chemo for now. If the chemo works well and your mets can be reduced, the primary tumor will also be targeted, so don't worry there.

I hope your treatments can be as effective as possible and make sure to keep the questions coming

[BrownBagger]

CEA is not a good indicator for everyone. I don't think it is for me. My CEA before any treatment for a T3 tumor was 3.3. After surgery it dropped to 1.5 and stayed there until recently, when it rose to 2.1. So it's not a guaranteed indicator. I think CT scans are the only sure-fire way to measure progress, not that anything with this disease is sure-fire.

[juliej]

Thank you, gofisch! I am trying to breathe deep, but I'm really terrified. The Ativan sounds like it might help. Do I ask the oncologist for it? Are there any side effects from it (drowsiness, etc.)? Or do you only take it at night?

I'm sure I'll have some more questions for you soon. It's good to know you are there.

Julie

I know this is a huge shock for you. It is for all of us. It's a lot of information to absorb. My first suggestion is to bug your oncologist and ask why they are taking this course instead of radiation/surgery. You really need to not be shy about asking a zillion questions. Walk in there with a list so you don't forget. Call during the day and ask the nurse to give you an answer. It's what they signed up for when they decided to work with cancer patients. Panic is part of our symptoms! Also, this is the best advice a friend who had cancer gave me: ask for Ativan. It is an anti-anxiety drug. It will help you sleep and help with the panic. I don't know anyone who has had cancer who did not take ativan.

I was stage III, but I do now that the reason they do radiation/chemo BEFORE surgery is to shrink the rectal tumor before surgery. Pelvic surgery is really tricky, and they want the tumor to be as small as possible before they go in there so they reduce the risk of rogue cells getting away during surgery.

Folfox should definitely shrink the rectal tumor, as well as the other spots and anything microscopic hanging out in your blood stream and your lymph system.

It doesn't sound like they are giving up on you. My uneducated guess is that they want to us the Folfox to aggressively get at your lung spots so they don't grow. Maybe the 5FU alone is not as great for metastatic tumors, I don't know. But your rectal tumor should not grow during this process, and if it does not shrink, they can do radiation after and then surgery.

Good luck, and keep us posted. Deep breaths. And we are all here to support you.

Frances

[juliej]

Thanks for responding, BrownBagger!

How often do they measure your CEA levels? What about CT scans? I would think they measure CEA levels more often from drawing blood, and CT scans only every 3 months, but I'm such a newbie to this whole thing that I don't know. If they just use CT scans, wouldn't they be slow finding out that a chemo drug wasn't working for you because it's longer between them?

Julie

CEA is not a good indicator for everyone. I don't think it is for me. My CEA before any treatment for a T3 tumor was 3.3. After surgery it dropped to 1.5 and stayed there until recently, when it rose to 2.1. So it's not a guaranteed indicator. I think CT scans are the only sure-fire way to measure progress, not that anything with this disease is sure-fire.

[LeeT]

Hi Julie,

Sorry to hear about your dx...it seems like there are more and more people out there who despite living a healthy lifestyle still get to deal with this cancer stuff! I found it a hard transition from healthy to sick- filling in health forms everything was always n/a to most of the questions now unfortunately there are more questions that I can answer with "yes" and then filling in my recent medical history.
I am also stage iv and have faith in my Onc that they are doing what they can for me..my cea is currently 1894 (went down from 2131 after 4 treatments) so my cea levels are a good indicator as to how the chemo is working. I am not on the same regime as you will be doing however the chemo has slightly shrunk my primary tumor and has significantly shrunk the numerous mets on my liver. My onc is not that concerned with the primary tumor as I don't have any blockages and is more focused on getting rid of the mets first and then we will see what we can do for the primary. I have no surgery or radiation scheduled and just have chemo for the undetermined future- I have done 6 treatments and will reassess my "situation" after 12 treatments...maybe a short chemo break even though I would prefer to keep going while I can still tolerate the treatment well.

The first while is a huge mental adjustment but hopefully once you start your treatment and have your questions answered things will start to fall into place...you'll get into the routine- chemo week...no chemo week and it will hopefully get easier.

[ams5796]

Julie,

I think when a person receives a stage 4 diagnosis they have to take action. At the very least you should go for a second and maybe even a third opinion. You also need to ask your oncologist what his/her long time plan is. Are you at a major cancer center? I think that is a wise move also for a stage 4 patient.

I was recently diagnosed with a recurrence that brought me to stage 4. As you can see from my signature below I now have two mets in my lungs. My local oncologist wanted to take a "wait and see" approach since I too have no symptoms. I then went to an oncologist at Dana Farber in Boston who agreed with this approach. Like you, I felt like both of them had written me off. So, I then went to Sloan Kettering in NY. Right away the oncologist there put me on chemo with the plan that we're working to shrink the mets for RFA or surgery. She actually used the word "cure."

Ann

[Gaelen]

They're just going to give me chemo drugs - either Folfox (using pump) and Avastin -- or Xeloda, Oxaliplatin, and Avastin. Does that treat the original tumor plus the spots? I thought only radiation took care of the tumor. Is this standard treatment for Stage 4? If the chemo shrinks the tumors, they might consider surgery if there is a single spot remaining. My CEA is only 7.4 and I don't have any lymph node involvement. I'm worried they are giving up on me. Please let me know there is hope for Stage 4's.

Hi, Julie. Lots of questions, and lots to process. I hope I can add to the understanding and not the panic.

Yes, chemo can treat both the mets and the primary rectal tumor. In fact, there are studies that indicate (for the reasons Fletch outlined) that with many stage IVs whose rectal tumors aren't doing anything critical like a blockage, that chemo first, maybe a LOT of chemo first, is the way to go. I had 16 rounds of folfox + Avastin, with a 5FU infusion pump, from my dx at the end of April 2004 to the week before Christmas that year. I took a three-week break after my Dec. 17 infusion so that I could not be on chemo for Christmas, and show my dogs on New Year's weekend. After the dog shows, Dr. Personality from MSKCC in NYC called and said she'd seen my latest scans (from December) and wanted to present me to the tumor board for surgery. I'd originally been ruled out for surgery that summer - too many tumors in my liver. My three-week chemo break extended until March 3, 2006, when I got the first post-op chemo infusion after my first surgery on February 9.

Radiation is great on rectal tumors - but as Fletch mentions, your docs need to go after the tumors in your lungs and liver (which are much more dangerous than the primary) and after any circulating tumor cells in your system. When those are reduced/stable, radiation and surgery might become an option.

My CEA was only around 5, and dropped immediately after the first chemo treatment to normal ranges. It's not really a marker for me - but the way the docs can tell that treatments are working are my liver enzymes (ALT, AlkPhos, AST) and CT scans.

Please don't start out treatment thinking that the doctors you're working with are giving up on you - or looking to others in different situations for 'hope.' Oncologists want to help people and they want the treatments they offer to knock out the tumors - that's NOT giving up on anyone or anything. Just because you want surgery doesn't mean it's the right choice for you at this time. And to paraphrase Eleanor Roosevelt, "nobody can take away your hope without your consent." All the hope you need to get through this one day at a time is within you, Julie. Nothing that happens in the outside world can take that away, or increase what you already have.

Be well.

[juliej]

Gaelen,

Thanks so much for your words of wisdom! They definitely added to the understanding -- and calmed down the panic. The quote from Eleanor is perfect. I'm not going to let anyone take away my hope.

I made an appointment for a second opinion with another onc. The difference was night and day. The first one was cold and clinical. I was just another statistic to her. She spent most of the appt telling me how debilitated I would become. The second one didn't give me false promises, but said we'd fight this together, as a team. He said my current health (which is excellent) would help me with the battle. His nurses gave me a tour of the infusion room to put my mind at ease about the process. It's still scary as hell to start down this road, but now I feel like I have someone who cares.

About CEA -- I think it's weird how some of us have unreliable CEA markers. Makes me wonder if the tumor is slightly different or if it's just a difference in our blood chemistry.

Thanks again for caring enough to give a newbie some advice,
Julie

They're just going to give me chemo drugs - either Folfox (using pump) and Avastin -- or Xeloda, Oxaliplatin, and Avastin. Does that treat the original tumor plus the spots? I thought only radiation took care of the tumor. Is this standard treatment for Stage 4? If the chemo shrinks the tumors, they might consider surgery if there is a single spot remaining. My CEA is only 7.4 and I don't have any lymph node involvement. I'm worried they are giving up on me. Please let me know there is hope for Stage 4's.

Hi, Julie. Lots of questions, and lots to process. I hope I can add to the understanding and not the panic.

Yes, chemo can treat both the mets and the primary rectal tumor. In fact, there are studies that indicate (for the reasons Fletch outlined) that with many stage IVs whose rectal tumors aren't doing anything critical like a blockage, that chemo first, maybe a LOT of chemo first, is the way to go. I had 16 rounds of folfox + Avastin, with a 5FU infusion pump, from my dx at the end of April 2004 to the week before Christmas that year. I took a three-week break after my Dec. 17 infusion so that I could not be on chemo for Christmas, and show my dogs on New Year's weekend. After the dog shows, Dr. Personality from MSKCC in NYC called and said she'd seen my latest scans (from December) and wanted to present me to the tumor board for surgery. I'd originally been ruled out for surgery that summer - too many tumors in my liver. My three-week chemo break extended until March 3, 2006, when I got the first post-op chemo infusion after my first surgery on February 9.

Radiation is great on rectal tumors - but as Fletch mentions, your docs need to go after the tumors in your lungs and liver (which are much more dangerous than the primary) and after any circulating tumor cells in your system. When those are reduced/stable, radiation and surgery might become an option.

My CEA was only around 5, and dropped immediately after the first chemo treatment to normal ranges. It's not really a marker for me - but the way the docs can tell that treatments are working are my liver enzymes (ALT, AlkPhos, AST) and CT scans.

Please don't start out treatment thinking that the doctors you're working with are giving up on you - or looking to others in different situations for 'hope.' Oncologists want to help people and they want the treatments they offer to knock out the tumors - that's NOT giving up on anyone or anything. Just because you want surgery doesn't mean it's the right choice for you at this time. And to paraphrase Eleanor Roosevelt, "nobody can take away your hope without your consent." All the hope you need to get through this one day at a time is within you, Julie. Nothing that happens in the outside world can take that away, or increase what you already have.

Be well.

[juliej]

Hi, Ann,

You were right. I went for a second opinion and ending up switching to a new oncologist, who actually cares about helping me fight this disease.

You're on Xeloda, right? How's it going? I haven't started it yet, but will next week. Any tips you can give me?

Hugs,
Julie

Julie,

I think when a person receives a stage 4 diagnosis they have to take action. At the very least you should go for a second and maybe even a third opinion. You also need to ask your oncologist what his/her long time plan is. Are you at a major cancer center? I think that is a wise move also for a stage 4 patient.

I was recently diagnosed with a recurrence that brought me to stage 4. As you can see from my signature below I now have two mets in my lungs. My local oncologist wanted to take a "wait and see" approach since I too have no symptoms. I then went to an oncologist at Dana Farber in Boston who agreed with this approach. Like you, I felt like both of them had written me off. So, I then went to Sloan Kettering in NY. Right away the oncologist there put me on chemo with the plan that we're working to shrink the mets for RFA or surgery. She actually used the word "cure."

Ann

[SkiFletch]

Sorry about the late reply Julie, but better late than never

While you may have been frightened by the initial consult with your onc, do know that for many (but not all) people, chemo is very tolerable. Sure it sucks for a few days each cycle, but you can lead a relatively normal life on it for the most part. I'm a stubborn bastard and when my onc told me I wouldn't want to or be able to go skiing because of cold sensitivity, I made it my "mission" over the winter to get out on the slopes. And I made it out 3 times right smack in the middle of my chemo treatments. After the first time, I blew up a picture, stapled it to my ski-tag and walked into my onc's office for chemo with a big shit-eating grin on my face. My oncologist shook his head in defeat and said, "I should have known" .

Again, not everyone can do things like that, but they are certainly possible. I skiied, exercised regularly, SCUBA dove, went on vacation to Florida, planned a wedding, bought a house, and trained for mountain climbing all throughout my 12 rounds of chemo. Most folks around here call me crazy, but I'm a firm believer in the "If there's a will, there's a way" mantra and I knew I didn't want to give the cancer anymore time than it deserved . Did I have bad days on chemo? Sure did, there were plenty of times I just wanted to crawl in a hole and sleep. I didn't do most of that "stuff" on my first 5 days of each 2-week cycle, but after that, as I felt more "normal" I made sure to do more normal things. I managed to work throughout my treatments. My boss was beyond helpful in getting me through it as I did need an occasional nap on thurs/fri (my infusions were on a wed), but if I took those power naps, I was definitely able to do plenty of stuff, and my job is pretty physical in nature too. MOST folks around here with desk jobs have no problem working through chemo.

And as for the pump/pill discussion, the pump was annoying, don't get me wrong, but I'd rather have it than risk the hand/foot syndrome with Xeloda. Also I'm admittedly not the best about taking my medications on-schedule and I knew I'd kick myself if I missed doses of Xeloda. I wasn't given a choice, but I didn't ask for the Xeloda either. That's just me, the decision is personal for everyone

Anyway, hope that was helpful. If you have more questions, I'd be happy to answer them, but it may be a while as I'm scheduled for surgery tomorrow