CancerCompass message board discussion started by ConcernedinKC on 6/23/2008 http://www.cancercompass.com/message-board/message/all,25337,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad had 6 weeks of radiation, then 5 weeks of rest, then surgery on May 2, 2008. Now June 22, 2008, an oncologist is suggesting that if he has chemo for 6 months, his chance of survival will increase about 20%--from 40% to 60%. I'm not convinced. Is this true? What is the overall survival rate of having chemo v. not having chemo following surgery and radiation. Who lives longer.Any thoughts. I don't want my dad's immune system compromised any more. But I want him to have the best survival statistic. Thank you for reading this and for any helpful advice you can offer. ConcernedinKC Mon, 23 Jun 2008 00:00:00 GMT What Stage was your Dad's cancer?  If it was stage three, then the cancer may have spread beyond the immediate area of the rectum.  If it was stage four, then it has spread beyond the area of the rectum.  In either case, the chemo should help kill off any small, undetected mets.  I was stage three in 2001-2002 and had a similar treatment course recommended.  I was only 45 at the time, so I thought it would help insure long term survival.  So far so good.  The chemo I had was called 5FU plus Leucovorin.  It wasn't too debilitating for me.  I was able to work through the six months postop chemo.How old is you dad?  How well did he tolerate the radiation and surgery?  It's really his choice, but if he is willing and able to endure six more months of treatment, it should improve his prognosis.Best wishes,Lou SurvivorLou Mon, 23 Jun 2008 00:00:00 GMT  On 6/23/2008 SurvivorLou wrote:What Stage was your Dad's cancer?  If it was stage three, then the cancer may have spread beyond the immediate area of the rectum.  If it was stage four, then it has spread beyond the area of the rectum.  In either case, the chemo should help kill off any small, undetected mets.  I was stage three in 2001-2002 and had a similar treatment course recommended.  I was only 45 at the time, so I thought it would help insure long term survival.  So far so good.  The chemo I had was called 5FU plus Leucovorin.  It wasn't too debilitating for me.  I was able to work through the six months postop chemo.How old is you dad?  How well did he tolerate the radiation and surgery?  It's really his choice, but if he is willing and able to endure six more months of treatment, it should improve his prognosis.Best wishes,LouLou, From the bottom of my heart, thank you for responding and sharing your personal experience. To answer your questions--My dad's post surgery pathology report said the cancer was stage 2 and there was no cancer in any of the 12 lymph nodes removed, but doctors believe it could have been stage 3 before the radiation and surgery.  There was some mucous in the mesteratic fat and the tumor was through the wall . . . The staging uncertainity is one of the reasons the decision is so hard.  It could have been stage 2 or stage 3 tumor.My dad is 78.  But a health 78 year old that tolerate radiation very well.  Surgery recovery has been more difficult and he has an ileostomy.  My dad just started back to work last Monday . . . They are offerring the same 5Fu with Leucovorin.  Did you get yours intervenously?  Or orally?Thanks again and I'm glad you are doing well. --Ann E. ConcernedinKC Tue, 24 Jun 2008 00:00:00 GMT Hi Ann,Before my surgery, I had a 5FU I.V. pump for the five weeks (while I was getting the radiation) .  At that time, I was getting the 5FU 24/7.  It got to be too much for me and I started getting pretty bad mouth sores.  The Oncologist backed off the dose and I was OK after that.  It sounds like your dad got to skip that part.  My tumor shrank from the radiation and chemo to the point where the surgeon said he had trouble finding it during the surgery, so I can understand that your dad's tumor might have been staged higher before the radiation.After my surgery, my six months chemo went something like this (I forget the exact details); One day a week (Fridays) I would go into the chemo ward in the afternoon.  I'd be on an I.V. drip for two hours with a continuous drip of the Leucovorin the whole time.  At about one hour into the drip, the nurse would "Push" all the 5FU over a period of about a minute.  I would get the chemo once a week for six weeks then be off two weeks.  This cycle repeated three times for a total of about six months.  The chemo caused my hair to thin out a little, but not too much.  My fingernails got really thin, to the point where I couldn't open a softdrink can without using a key or something similar to pry up on the ring.  My skin got noticeably thinner and the palms of my hands were wrinkled most of the time.  I only had one bad bout with diarrhea.  The doc lowered my dose of 5FU and again I was ok after that.I know an older man (he was in his early 60's with colon cancer) who was on the 5FU on a similar treatment pattern for a period of about a year and a half.  He had a spot on his liver and the extended chemo was to keep that under control.  He tolerated the chemo better than I did and it was just an inconvenience to him.My wife's uncle was well into his 80's when he was diagnosed with stage four colon cancer.  He was on the 5FU the last years of his life in kind of a maintenence program.  He also tolerated the chemo very well and continued to play horseshoes every week right up to the end.It's hard to know if your dad really "needs" the chemo or not.  Is he seeing an Ongologist?  I've noticed that cancer patients who see an Oncologist tend to get the chemo more often that those who just go see a surgeon.  If he is already seeing on Oncologist, a second opinion might be helpful.  Best wishes,Lou  SurvivorLou Tue, 24 Jun 2008 00:00:00 GMT Hi Ann, I was diagnosed as a stage II.  I'm really wondering why your dad didn't get 5FU at the same time as the radiation since that is the "standard of care".  I had the 5FU continuous infusion 24/7 for six weeks at the same time as 28 sessions of radiaiton.  I also got the mouth sores and the onc. decreased the dose and they got better.  I was a little tired, a little nauseous but they have wonderful antiemetics (for nausea) drugs and so that wasn't an issue.  My cancer was Mucinous adenocarcinoma which sounds like what your dad had.  Did the path report after surgery say if his margins were clear?  He really needs to have the chemo in case there is even one microscopic cancer cell they missed so it can be killed off.  There's never any guarantees but I would do what ever it takes so if it does come back you aren't saying to yourself "what if". Good LUck!Terry Snowmom60 Wed, 25 Jun 2008 00:00:00 GMT I too wonder why your dad didn't get the chemo during his radiation.  Terry is correct that it is usually the standard of care.  Chemo along with the radiation just allows the radiation to work better and the dose is usually less.  If the oncologist is recommending chemo, I would certainly go along with it, particularly since you are unsure of what his stage was prior to the radiation. If they are still staging him at a stage II AFTER radiation, that would USUALLY mean that the tumor was larger and/or lymph nodes were involved prior to the radiation treatments.  In any case, find out which chemo the onc is recommending.I took the oral form of 5FU which is Xeloda both during radiation and for 5 months after the rad treatments.  Most people tolerate the Xeloda better than the infused, but you have to remember that each person is different.  With the Xeloda there is also no need for a port to be placed in the chest for infusions.  I would also suggest finding out about any other chemo drugs the doctor is recommending.  The other common drug would be oxaliplatin which can be very hard on patients and almost always causes neuropathy - which is generally long lasting (doesn't go away when treatment stops) or sometimes is even permanent.  Your dad and his onc did to talk about whether or not the risk of the drug outweighs the benefit of it.  Studies have shown that for a stage II it does not show any significant benefit (the oxi, not the 5FU) in relation to the risk.  However, since the stage prior to surgery is in question, you will really have to talk with the onc about this.Good luck.Jaynee soccermom Wed, 25 Jun 2008 00:00:00 GMT On 6/24/2008 SurvivorLou wrote:Hi Ann,Before my surgery, I had a 5FU I.V. pump for the five weeks (while I was getting the radiation) .  At that time, I was getting the 5FU 24/7.  It got to be too much for me and I started getting pretty bad mouth sores.  The Oncologist backed off the dose and I was OK after that.  It sounds like your dad got to skip that part.  My tumor shrank from the radiation and chemo to the point where the surgeon said he had trouble finding it during the surgery, so I can understand that your dad's tumor might have been staged higher before the radiation.After my surgery, my six months chemo went something like this (I forget the exact details); One day a week (Fridays) I would go into the chemo ward in the afternoon.  I'd be on an I.V. drip for two hours with a continuous drip of the Leucovorin the whole time.  At about one hour into the drip, the nurse would "Push" all the 5FU over a period of about a minute.  I would get the chemo once a week for six weeks then be off two weeks.  This cycle repeated three times for a total of about six months.  The chemo caused my hair to thin out a little, but not too much.  My fingernails got really thin, to the point where I couldn't open a softdrink can without using a key or something similar to pry up on the ring.  My skin got noticeably thinner and the palms of my hands were wrinkled most of the time.  I only had one bad bout with diarrhea.  The doc lowered my dose of 5FU and again I was ok after that.I know an older man (he was in his early 60's with colon cancer) who was on the 5FU on a similar treatment pattern for a period of about a year and a half.  He had a spot on his liver and the extended chemo was to keep that under control.  He tolerated the chemo better than I did and it was just an inconvenience to him.My wife's uncle was well into his 80's when he was diagnosed with stage four colon cancer.  He was on the 5FU the last years of his life in kind of a maintenence program.  He also tolerated the chemo very well and continued to play horseshoes every week right up to the end.It's hard to know if your dad really "needs" the chemo or not.  Is he seeing an Ongologist?  I've noticed that cancer patients who see an Oncologist tend to get the chemo more often that those who just go see a surgeon.  If he is already seeing on Oncologist, a second opinion might be helpful.  Best wishes,Lou  Thank you, Lou. I hope you are doing okay. Yes, my dad is seeing an oncologist. I don't know if we have time to get a second opinion which is why I appreciate people's experience and input. As I said in my original email, the oncologist said we should start chemo next week. It will be 8 weeks from surgery. Iearned that once the tumor is out, metastsis can happen quickly. I just wanted to make sure that the statistic about survival is accurate. ConcernedinKC Wed, 25 Jun 2008 00:00:00 GMT On 6/25/2008 Snowmom60 wrote:Hi Ann, I was diagnosed as a stage II.  I'm really wondering why your dad didn't get 5FU at the same time as the radiation since that is the "standard of care".  I had the 5FU continuous infusion 24/7 for six weeks at the same time as 28 sessions of radiaiton.  I also got the mouth sores and the onc. decreased the dose and they got better.  I was a little tired, a little nauseous but they have wonderful antiemetics (for nausea) drugs and so that wasn't an issue.  My cancer was Mucinous adenocarcinoma which sounds like what your dad had.  Did the path report after surgery say if his margins were clear?  He really needs to have the chemo in case there is even one microscopic cancer cell they missed so it can be killed off.  There's never any guarantees but I would do what ever it takes so if it does come back you aren't saying to yourself "what if". Good LUck!Terry Terry, Thank you for sharing. The reason they didn't give my dad radiation before surgery was because he's 78 and they thought with radiation, it would be too difficult and maybe then he wouldn't pull through surgery. I think the margins were clean in the path report, but I don't thing the lab was advanced enough to go for apical nodes, and DNA distant satellites, etc. I tried, but they said those tests aren't ready for "Prime time." --Ann E. ConcernedinKC Wed, 25 Jun 2008 00:00:00 GMT Thanks again, Lou. The post-surgery regimen is what they will probably do with me dad. Is Friday a good day? He is still working full time and the thought was to do chemo on Weds, so if he had a problem, staff would still be in. ConcernedinKC Wed, 25 Jun 2008 00:00:00 GMT On 6/25/2008 soccermom wrote:I too wonder why your dad didn't get the chemo during his radiation.  Terry is correct that it is usually the standard of care.  Chemo along with the radiation just allows the radiation to work better and the dose is usually less.  If the oncologist is recommending chemo, I would certainly go along with it, particularly since you are unsure of what his stage was prior to the radiation. If they are still staging him at a stage II AFTER radiation, that would USUALLY mean that the tumor was larger and/or lymph nodes were involved prior to the radiation treatments.  In any case, find out which chemo the onc is recommending.I took the oral form of 5FU which is Xeloda both during radiation and for 5 months after the rad treatments.  Most people tolerate the Xeloda better than the infused, but you have to remember that each person is different.  With the Xeloda there is also no need for a port to be placed in the chest for infusions.  I would also suggest finding out about any other chemo drugs the doctor is recommending.  The other common drug would be oxaliplatin which can be very hard on patients and almost always causes neuropathy - which is generally long lasting (doesn't go away when treatment stops) or sometimes is even permanent.  Your dad and his onc did to talk about whether or not the risk of the drug outweighs the benefit of it.  Studies have shown that for a stage II it does not show any significant benefit (the oxi, not the 5FU) in relation to the risk.  However, since the stage prior to surgery is in question, you will really have to talk with the onc about this.Good luck.Jaynee Jaynee, The oncologist is suggesting that if he elects chemo that 5FU be taken with Leucovorin (sp?). This once a week intraveneously for 6 weeks, 2 weeks off and then this cycle repeated 2 more time (3 time today over 6 months). I would like to hear more about the benefits of oral chemo vs. intraveneously. I have heard effectiveness is the same, but that oral dosage can all hit at the end when it is too late to adjust. I also know you have to do more of your own monitoring. Additionally, I know that it can mean less intense nausea. Thanks for sharing! --Ann E. ConcernedinKC Wed, 25 Jun 2008 00:00:00 GMT Ann,I chose Friday so that I'd have the weekend to rest and recover.  There was always a doctor on call, so I wasn't too worried about that.  I can say that Friday afternoon was always a very busy time in the chemo ward ( I think just about everyone wanted their chemo on Friday) and things were just about always running behind schedule.  Your dad might have a good idea to go on Wednesday.Best wishes,Lou SurvivorLou Wed, 25 Jun 2008 00:00:00 GMT Thank you, Lou! ConcernedinKC Thu, 26 Jun 2008 00:00:00 GMT When I had my radiation treatments, I started on the 5FU (with the pump 24/7 you don't get the leucovorin) and I did not respond well.  I never had overpowering nausea, just a basic queasiness and was very very tired.  I didn't want to eat and hated the port, the pump, the whole thing!  I am not usually one to get depressed, but being honest here, that pump depressed me BIG time. The doctors would get mad at me because I was losing weight which is something you're supposed to try NOT to do during radiation but the infused 5FU took my appetite away and gave me mild cramps.  Nothing truthfully was horrible.  When I switched to the Xeloda I had an appetite again and things overall just were better.  I wasn't tethered to the pump, didn't get any mouth sores, just all in all, for me a totally different lifestyle.  You have to remember, though, that everyone reacts differently.  While the majority of people do fare better on Xeloda, not everyone falls into that category.  Oftentimes oncs are reluctant to prescribe the oral form because they fear that the patients will not comply with the dosing schedule.  You would have to talk with the onc about this.I also strongly feel that taking the oral form allows the patient to feel more 'normal' during times of treatment.  There is no pump, no restrictions on showering, no tubing from your chest, etc.  It's just my opinion, but I do believe that, at least for me, the emotional aspect of feeling normal went a long way in my psychological journey through my cancer treatments. Jaynee soccermom Fri, 27 Jun 2008 00:00:00 GMT