New here, need some advice please

Barnaby

hippiechicks said:

Hi there. Welcome to our

Hi there. Welcome to our little cyber community. Although, sorry you are in this boat.

I can relate to your dilemma, as I also faced complications after surgery preventing the start of chemo within the first 12 weeks.  I actually was not aware at the time that there was a suggested time, although I recall wanting to desperately begin ASAP.  It took just over 4 months for me to be able to begin my Tx's.

i do not regret it one bit.  I didn't always like them, and honestly kicked and screamed through all of them, but in the end I can say I did all I could to stop the beast! 

It is, however, a very personal decision.  I was told by some doctors to march forward and some told me to stand still, I in the end decided to fight the way I always have for what I want ... That is hard and determined.  My chances for recurrence were told to be near 100%, I am currently 2 years NED.  

No one will ever know if that is from surgery alone or from surgery followed by chemo ... Even if later than hoped. 

If it helps at all, I think the latest news is that it is still inconclusive, and it is just a theory regarding the time frame in which to begin but in a perfect world (which we clearly are not in) the sooner the better to stop any growth. 

My very best to you and wish you comfort in your decision process. 

Hi

Having read all the replies, I am sure by now you realize each one of us is different.  I had oral chemo before surgery along with radiation.  Was okay for a few weeks, then all hell broke lose.  Constant diahrrea, dehydration etc..  They gave me a rest for 6 weeks off everything before surgery.  The surgery went okay and I did not need an ostomy.  I was in the hospital for 8 days.  Then a months rest before the next round of chemo.  Then the fun started.  The first three treatments were okay.  I was to have them every two weeks, the 48 hours at home with the bag) I did have diahrrea and not much appetite.  With each treatment after that I had some new side affect.  All my toes are numb from oxalipatin (sp?), and still are, so they took me off that drug.  My port would not give blood, they could put stuff in me, but it would not let them get blood, so I had to poked each time for blood work.  Then I could not breath one night and went to the emergency, and they thought I had a kidney stone, but it turned out to be a closed ureter from the radiation.  So they put in a stent. (3 days in the hospital for tests etc.), then three weeks later they wanted to change the stent and they nicked a vein, so 4 days in the hospital.  This saga goes on and on, but it iterrupted my treatments.  They just postponed them and after 8 I wanted to give up but they talked me out of it.  I ended up doing 11 of 12, but it took forever.  Then I developed daily fevers, and after 6 weeks they realized it was the port causing the fevers.  So that came out and the fevers stopped.  But this was another 4 day hospital stay.  I got through all this, but I did spend much time sitting in a chair staring at the walls because I did not feel well enough to do anything.  Now due to the radiation again I have severe femur pain, which I just found out is from the bones around my hip implant being so thin they are like potato chips.  They are going to have to take this out and replace it and do some bone grafting, and I hope that is the end of the story.  So you really have to make your own decision.  I was only stage 2 and I am not convinced I needed all the after chemo, but I felt I should do it anyway.

JanJan63

Barnaby said:

Hi

Having read all the replies, I am sure by now you realize each one of us is different.  I had oral chemo before surgery along with radiation.  Was okay for a few weeks, then all hell broke lose.  Constant diahrrea, dehydration etc..  They gave me a rest for 6 weeks off everything before surgery.  The surgery went okay and I did not need an ostomy.  I was in the hospital for 8 days.  Then a months rest before the next round of chemo.  Then the fun started.  The first three treatments were okay.  I was to have them every two weeks, the 48 hours at home with the bag) I did have diahrrea and not much appetite.  With each treatment after that I had some new side affect.  All my toes are numb from oxalipatin (sp?), and still are, so they took me off that drug.  My port would not give blood, they could put stuff in me, but it would not let them get blood, so I had to poked each time for blood work.  Then I could not breath one night and went to the emergency, and they thought I had a kidney stone, but it turned out to be a closed ureter from the radiation.  So they put in a stent. (3 days in the hospital for tests etc.), then three weeks later they wanted to change the stent and they nicked a vein, so 4 days in the hospital.  This saga goes on and on, but it iterrupted my treatments.  They just postponed them and after 8 I wanted to give up but they talked me out of it.  I ended up doing 11 of 12, but it took forever.  Then I developed daily fevers, and after 6 weeks they realized it was the port causing the fevers.  So that came out and the fevers stopped.  But this was another 4 day hospital stay.  I got through all this, but I did spend much time sitting in a chair staring at the walls because I did not feel well enough to do anything.  Now due to the radiation again I have severe femur pain, which I just found out is from the bones around my hip implant being so thin they are like potato chips.  They are going to have to take this out and replace it and do some bone grafting, and I hope that is the end of the story.  So you really have to make your own decision.  I was only stage 2 and I am not convinced I needed all the after chemo, but I felt I should do it anyway.

Barnaby

Oh my goodness, that sounds horrible. I'm sorry you went through all of that and are continuing to have issues caused directly by the treatments. I've seen a few people call it the gift that keeps on giving. So true, sadly. 

I'm having pain in my hip joints that aches almost all of the time. I suspect it's from the chemo and/or radiation but it didn't start until a couple of months after it ended. Or I didn't realize because other things hurt so much. The past few days I have a really painful muscle cramp that doesn't want to go away and is so bad in the morning I can hardly walk. Is that from chemo? I have no idea. I think it's from stress because I restart chemo in less than a week and I'm not sleeping because of worrying about it and am probably tensing that leg or something.

peterz54

second opinion and chemo regime

As has been mentioned no one can predict how you will respond - chemo regimes are based on trials involving sufficiently large numbers of patients from which to derive statitical outcomes.  There are variations in the regimes but they are basically standardized - not just at the whim of the oncologist.  My wife was stage 4 and from the studies each of the 4 chemo drugs she used added on average 2 to 4 months to the typical stage 4 patient's survival.   None of these drugs are magic bullets and some of the newer drugs, like avastin, are criminally over-priced.   Each patient is an experiment of one and your response should be closely monitored.   Blood work is important as is rapid follow-up on any side effect.   Radiology like oncology is not a complete science - there is a lot of indiviudal judgement which goes into reading PET and CT scans and I would recommend that you always get your own copies of these reports and if something seems ambiguous aks or get a second opinion.   As for your oncologist, even if he/she had a great personality and seemed imminently competent you should still find a good oncologist, possible at a teaching hospital where they may be up on the latest research, have all your records transfered there and get a second opinion as to the therapy and what to expect, include possible future options.

JanJan63

peterz54 said:

second opinion and chemo regime

As has been mentioned no one can predict how you will respond - chemo regimes are based on trials involving sufficiently large numbers of patients from which to derive statitical outcomes.  There are variations in the regimes but they are basically standardized - not just at the whim of the oncologist.  My wife was stage 4 and from the studies each of the 4 chemo drugs she used added on average 2 to 4 months to the typical stage 4 patient's survival.   None of these drugs are magic bullets and some of the newer drugs, like avastin, are criminally over-priced.   Each patient is an experiment of one and your response should be closely monitored.   Blood work is important as is rapid follow-up on any side effect.   Radiology like oncology is not a complete science - there is a lot of indiviudal judgement which goes into reading PET and CT scans and I would recommend that you always get your own copies of these reports and if something seems ambiguous aks or get a second opinion.   As for your oncologist, even if he/she had a great personality and seemed imminently competent you should still find a good oncologist, possible at a teaching hospital where they may be up on the latest research, have all your records transfered there and get a second opinion as to the therapy and what to expect, include possible future options.

Thank you Peter. The more I learn the more I realize how little the experts know.

Just being on this forum makes me feel more in control of my treatment than I did. The only other person I know with colorectal cancer is over seventy and his treatments are different than mine. They didn't think he was well enough to have surgery for one thing. Everyone else has had breast cancer which is very different.