Hello everyone, Jim starts Folfox soon

Buzzard said:

Folfox/without the Avastin.......
I did 6 months of Folfox without the Avastin....I am an exception for side effects so mine were I think severe..They were tolerable but nasty...anyway, here is a list I compiled in Dec 2009 about Oxaliplatin/Leucovorin/5fu(Flouracil)>>>Folfox


December 23, 2009 - 1:19am
Oxy and the 10 top things to look out for..........

(1) Cold Sensitivity....Im not talking about being cold im talking about touching something and it feels like your fingers are instantly freezing, or taking a drink of anything below room temperature and your throat feels as if its closing up with shards of glass sticking in it. It is an instant feeling just after chemo and will soon be constant until chemo is completed (probably every 2 weeks for 6 months total of 12)...anyway, it won't take but 1 time to understand what I am talking about...Cold air(winter air) will do the same thing. Your lips will start to go numb, speech will slur, its like being in a dentist office and the novacaine wearing off...but you'll get use to it....

(2) Jaw spasms...This will be anything you first take a bite out of will cause your jaws to act as if it just took a big bite out of a very sour lemon...Mine was very minor but still there, some are very painful...but you'll get use to it......

(3) Nausea...This was my worst part of the whole ordeal...I did Compazine, then Zofran, then Anzemet, then Emend...The Emend helped the most but I still was nauseous for 4-6 days. Believe it or not Chili was a staple for me at small doses. Everything will taste and be different. Somethings you love to eat you won't be able to smell. You will acquire a whole new diet...but you'll get use to it.......

(4) Neuropathy....Nerve Damage mostly to the fingertips and toes and bottom foot pads...caused by the Oxy, if continued for to long can be permanent, thus the need to keep the Onc and all Nurses up to date on how you feel at all times..This is the main reason most never finish the 12 treatments , me included, I finished 10 with oxy and then the last two with leucovorin and 5fu. Its probably the most pronounced and longest lasting side effect of oxy....but you'll get use to it....

(5) Port...This will most likely be the way the chemo will be introduced into your circulatory system...It is a round disk usually either single or double about the size of a quarter that is placed under the skin either with a local (not advised) or as an outpatient (advised). It will generally be placed just below the collarbone and will raise the skin about 1/4". This will be where the nurse will access with the needle to start the pre meds and also the chemo infusion...some use Lidocaine to glob on the port about 1 hour before infusion and you won't feel the stick...Its not very much fun, but you'll get use to it.

(6) Blood Draws and CBC (combined blood counts), WBC (White Blood Counts) usually done on the off weeks to assure that your blood counts and your immunity system(WBC) are not being compromised by being killed off by the chemo and not regenerating by themselves. You may miss some treatments which will prolong the time it takes for the 6 month regimen to be over with but for the most part there are 2 different types of shots that can be taken and either one will get you back to normal counts so that treatments can be continued...if you don't like needles , neither did I..but you'll get use to it...

(7) Neupagen or Neulasta...These are the shots that we do in order to boost our immune systems if our counts get low (usually the White Blood Counts) (WBC). The Neulasta is a one shot deal given in the back of the arm or in the stomach, Neupagen is a 2-3 shot regimen either given in back of arm or stomach. These injections have side effects normally minimal being slight headache and slight lower back pain. Some people have harder side effects . It is handled better if it is held in the hand and warmed before it is injected and if it starts to sting have them slow down the injection. It reproduces white blood cells at a greater speed than the body does normally and the sacrum usually pays for it...Its kind of a pain in the butt, but you'll get use to it...

(8) Hydration...Probably at the top of the list for things that you need to make sure you do...Water at room temp is bad enough but relevant in flushing out the chemo in your system, making you regular in bathroom issues, preventing dehydration (which is very prevalent in oxy patients because of the inability to eat or drink due to nausea). Small sips very often will make you feel a lot better a lot faster. It rinses out the residual chemo that wants to stick around and make you smell and reek of the metal taste and smell you will notice...room temperature water is nasty at best, but you'll get use to it...

(9) Nurse from Hell...There will undoubtably be the one nurse that will get you riled up no matter how well mannered you are. This will be the one normally with the Black fingernails polished, spiked hair, and the ina godda divita (LMAO)Tee shirt on. In her earlier days she was a spoiled little rich girl and her daddy cut her out of his will after she managed to get through nursing school by a Master in beer and a Minor in bicycle seat sniffing...she will be the one that you will be given to first, don't worry, you will remember her, it will be the first one that touched you in Oncology, and the last time that she will touch you, for you will let her know that she will be off limits to your veins or anything else you physically own...You won't like having to get a restraining order against her, but you'll get use to it...

(10)...Last but not least, "The Last Treatment Day"...This is suppose to be the epitomy of it all, the Grand end of chemo treatments, done, finito, finished...You will kiss all of the good looking nurses that have help save your life and made your journey as pleasant as possible, have listened to your every story and on bended knee served and cottled and cradled your every need. Your 2nd family so to speak as you have come to learn each of their names and some have become personal friends. You will even make up with the "Nurse from Hell" because you feel like everyone is now your closest friend and you have the world at your fingertips. Life is Great and now you can get back to life as it use to be.....WRONG...You feel as if everyone has abandoned you because all the attention you were getting at the oncologists office and all the nurses that were tooth and nail at your every beck and call are now doing the same to the other patients that are in the same need now as your were then, they have let you go on with your life and life as you know it has just done a major 180*...You are now going to have to adjust to your new "Normal" as it is, and start to learn how to manage with what you have been blessed to have left...your life...and I guarantee ya everyday you will wear a smile.....and life may be a little different than it was.......but you'll get use to it.....

Love and Hope for you as a caregiver and for your Loved One as a patient, the best for you both.................Buzzard.......

I hope this helps you both....Just remember, I had the worse side effects that I think you could have so hopefully it will be much better for him....

Buzzard said:

Folfox/without the Avastin.......
I did 6 months of Folfox without the Avastin....I am an exception for side effects so mine were I think severe..They were tolerable but nasty...anyway, here is a list I compiled in Dec 2009 about Oxaliplatin/Leucovorin/5fu(Flouracil)>>>Folfox


December 23, 2009 - 1:19am
Oxy and the 10 top things to look out for..........

(1) Cold Sensitivity....Im not talking about being cold im talking about touching something and it feels like your fingers are instantly freezing, or taking a drink of anything below room temperature and your throat feels as if its closing up with shards of glass sticking in it. It is an instant feeling just after chemo and will soon be constant until chemo is completed (probably every 2 weeks for 6 months total of 12)...anyway, it won't take but 1 time to understand what I am talking about...Cold air(winter air) will do the same thing. Your lips will start to go numb, speech will slur, its like being in a dentist office and the novacaine wearing off...but you'll get use to it....

(2) Jaw spasms...This will be anything you first take a bite out of will cause your jaws to act as if it just took a big bite out of a very sour lemon...Mine was very minor but still there, some are very painful...but you'll get use to it......

(3) Nausea...This was my worst part of the whole ordeal...I did Compazine, then Zofran, then Anzemet, then Emend...The Emend helped the most but I still was nauseous for 4-6 days. Believe it or not Chili was a staple for me at small doses. Everything will taste and be different. Somethings you love to eat you won't be able to smell. You will acquire a whole new diet...but you'll get use to it.......

(4) Neuropathy....Nerve Damage mostly to the fingertips and toes and bottom foot pads...caused by the Oxy, if continued for to long can be permanent, thus the need to keep the Onc and all Nurses up to date on how you feel at all times..This is the main reason most never finish the 12 treatments , me included, I finished 10 with oxy and then the last two with leucovorin and 5fu. Its probably the most pronounced and longest lasting side effect of oxy....but you'll get use to it....

(5) Port...This will most likely be the way the chemo will be introduced into your circulatory system...It is a round disk usually either single or double about the size of a quarter that is placed under the skin either with a local (not advised) or as an outpatient (advised). It will generally be placed just below the collarbone and will raise the skin about 1/4". This will be where the nurse will access with the needle to start the pre meds and also the chemo infusion...some use Lidocaine to glob on the port about 1 hour before infusion and you won't feel the stick...Its not very much fun, but you'll get use to it.

(6) Blood Draws and CBC (combined blood counts), WBC (White Blood Counts) usually done on the off weeks to assure that your blood counts and your immunity system(WBC) are not being compromised by being killed off by the chemo and not regenerating by themselves. You may miss some treatments which will prolong the time it takes for the 6 month regimen to be over with but for the most part there are 2 different types of shots that can be taken and either one will get you back to normal counts so that treatments can be continued...if you don't like needles , neither did I..but you'll get use to it...

(7) Neupagen or Neulasta...These are the shots that we do in order to boost our immune systems if our counts get low (usually the White Blood Counts) (WBC). The Neulasta is a one shot deal given in the back of the arm or in the stomach, Neupagen is a 2-3 shot regimen either given in back of arm or stomach. These injections have side effects normally minimal being slight headache and slight lower back pain. Some people have harder side effects . It is handled better if it is held in the hand and warmed before it is injected and if it starts to sting have them slow down the injection. It reproduces white blood cells at a greater speed than the body does normally and the sacrum usually pays for it...Its kind of a pain in the butt, but you'll get use to it...

(8) Hydration...Probably at the top of the list for things that you need to make sure you do...Water at room temp is bad enough but relevant in flushing out the chemo in your system, making you regular in bathroom issues, preventing dehydration (which is very prevalent in oxy patients because of the inability to eat or drink due to nausea). Small sips very often will make you feel a lot better a lot faster. It rinses out the residual chemo that wants to stick around and make you smell and reek of the metal taste and smell you will notice...room temperature water is nasty at best, but you'll get use to it...

(9) Nurse from Hell...There will undoubtably be the one nurse that will get you riled up no matter how well mannered you are. This will be the one normally with the Black fingernails polished, spiked hair, and the ina godda divita (LMAO)Tee shirt on. In her earlier days she was a spoiled little rich girl and her daddy cut her out of his will after she managed to get through nursing school by a Master in beer and a Minor in bicycle seat sniffing...she will be the one that you will be given to first, don't worry, you will remember her, it will be the first one that touched you in Oncology, and the last time that she will touch you, for you will let her know that she will be off limits to your veins or anything else you physically own...You won't like having to get a restraining order against her, but you'll get use to it...

(10)...Last but not least, "The Last Treatment Day"...This is suppose to be the epitomy of it all, the Grand end of chemo treatments, done, finito, finished...You will kiss all of the good looking nurses that have help save your life and made your journey as pleasant as possible, have listened to your every story and on bended knee served and cottled and cradled your every need. Your 2nd family so to speak as you have come to learn each of their names and some have become personal friends. You will even make up with the "Nurse from Hell" because you feel like everyone is now your closest friend and you have the world at your fingertips. Life is Great and now you can get back to life as it use to be.....WRONG...You feel as if everyone has abandoned you because all the attention you were getting at the oncologists office and all the nurses that were tooth and nail at your every beck and call are now doing the same to the other patients that are in the same need now as your were then, they have let you go on with your life and life as you know it has just done a major 180*...You are now going to have to adjust to your new "Normal" as it is, and start to learn how to manage with what you have been blessed to have left...your life...and I guarantee ya everyday you will wear a smile.....and life may be a little different than it was.......but you'll get use to it.....

Love and Hope for you as a caregiver and for your Loved One as a patient, the best for you both.................Buzzard.......

I hope this helps you both....Just remember, I had the worse side effects that I think you could have so hopefully it will be much better for him....