thanks to all for Day One Wishes....went well

maglets

Well I was scared but it all went well....they found a vein easily and the IV just slipped in. first we the Decadron and Dexitron.....then half hour of calcium and magnesium to help with neuropathy. then 2 hours of the oxyaliplatin and then repeat the first four things. There was no pain at the infusion site .Tonight I continue with the steroids and start the xeloda.

I know day one is always deceiving.....you think gee this is pretty good and then whack you get hit. In fact just typing this I can feel my fingers tingle and a glass of room temp water was too cold and hurty. Who knows if we'll get through but at least we've started.

Daydreamer I am up in Canada....that's why it's so cold....don't you worry ..you are not whining....it's tough....but you are doing it....any answers on the itching yet??

thanks to all....I am up and ready to fight after wearing my mom's diamond. Love the story of your mom's ashes going to chemo Mary

Best love
Maggie

msccolon

1 DOWN!
That's great! You will do just find, don't worry about it! Especially with your mother's diamond! Mothers are a great help whether they are here with skin or just in our hearts! Good luck and sleep well. I have never heard of Dexitron ... is it another steroid? What is it supposed to help with?
mary

daydreamer110761

itching....
yes - the nurse suggested taking an allergy pill and keeping benadryl on hand. and, well, i'm close enough to canada to feel your pain! Glad your day one went so well.

maglets

msccolon said:

1 DOWN!
That's great! You will do just find, don't worry about it! Especially with your mother's diamond! Mothers are a great help whether they are here with skin or just in our hearts! Good luck and sleep well. I have never heard of Dexitron ... is it another steroid? What is it supposed to help with?
mary

wrong word
honestly there mare if you got any smarter! you are right it is not deixitron....i was just one steroid and it sounded likedecadron....apodexamethasone,and Apo1metoclop and anzemet.

Yup one down and that's good with me...stupid part is i forgot to ask how many there are...i remember 6 but I don't know if that's 6 months or 6 rounds.

Baby girl is looking good there....how old in this pic?

lots of love,
mags

maglets

daydreamer110761 said:

itching....
yes - the nurse suggested taking an allergy pill and keeping benadryl on hand. and, well, i'm close enough to canada to feel your pain! Glad your day one went so well.

itching
wow I hope that works out for you....who needs any extra little pains. Yup that cold is really something....reached into the fridge for some water and whammo...prickly fingers...it's just something you have to learn....already microwaving the water to make it a litttle warmer.
thanks for your help,
Best wishes Maggie

msccolon

maglets said:

wrong word
honestly there mare if you got any smarter! you are right it is not deixitron....i was just one steroid and it sounded likedecadron....apodexamethasone,and Apo1metoclop and anzemet.

Yup one down and that's good with me...stupid part is i forgot to ask how many there are...i remember 6 but I don't know if that's 6 months or 6 rounds.

Baby girl is looking good there....how old in this pic?

lots of love,
mags

Laci
she is 4 months now! She loves that little chair (some kind of boppy seat or something like that). Standard treatment is 12 treatments, which at every other week winds up being 6 months. I think they tell us 6 months because 6 is less than 12! They try to sneak the number of actual treatments in on us
mary

polarprincess

maglets said:

itching
wow I hope that works out for you....who needs any extra little pains. Yup that cold is really something....reached into the fridge for some water and whammo...prickly fingers...it's just something you have to learn....already microwaving the water to make it a litttle warmer.
thanks for your help,
Best wishes Maggie

port
how come you don't have a port? I have never heard of getting oxaliplatin through a vein.. they told me it would be extremely toxic and crash the veins??

maglets

polarprincess said:

port
how come you don't have a port? I have never heard of getting oxaliplatin through a vein.. they told me it would be extremely toxic and crash the veins??

don`t know
asked about a port today from my onc just before infusion. She said with oxy plus xeloda I did not need a port....if I had been doing the oxy plus the wear-home pump with 5fu she would have used a port.

I had no pain today and no pain at the vein tonight...but you know what I really don`t know....maybe someone else does....

CherylHutch

maglets said:

don`t know
asked about a port today from my onc just before infusion. She said with oxy plus xeloda I did not need a port....if I had been doing the oxy plus the wear-home pump with 5fu she would have used a port.

I had no pain today and no pain at the vein tonight...but you know what I really don`t know....maybe someone else does....

Port/No Port
I had a friend who got the full oxy plus wear-home 5FU pump and they did it IV in the veins and not with the port. I'm going to have to ask her why she didn't get a port since her and I have the same oncologist. There must have been a reason because I couldn't imagine having the IV needle in your arm for the 46 hours at home with the portable pump.

But yes, if you are getting your IV infusions at the hospital/cancer centre and then taking an oral form when you are at home, it makes sense that they would just do it via an IV... and her explanation makes sense.

Congratulations for getting through the first day! It's amazing the little things we have to adjust.. but we do, and we figure it out pretty quickly... meanwhile life goes on and we realize we can still do the things we did before, so that's a relief in itself. And then there's the gold mine of coming here and babbling or venting or whatever because you know everyone who reads your posts has either been there themselves or they are a caregiver of someone who has... so everyone knows exactly where you are coming from

Huggggggs,

Cheryl

PS: I was at the dentist today and got 3 fillings on the upper right side. I swear, there's more discomfort once the freezing comes out than there was at any time I was on the chemo! Go figure???

msccolon

CherylHutch said:

Port/No Port
I had a friend who got the full oxy plus wear-home 5FU pump and they did it IV in the veins and not with the port. I'm going to have to ask her why she didn't get a port since her and I have the same oncologist. There must have been a reason because I couldn't imagine having the IV needle in your arm for the 46 hours at home with the portable pump.

But yes, if you are getting your IV infusions at the hospital/cancer centre and then taking an oral form when you are at home, it makes sense that they would just do it via an IV... and her explanation makes sense.

Congratulations for getting through the first day! It's amazing the little things we have to adjust.. but we do, and we figure it out pretty quickly... meanwhile life goes on and we realize we can still do the things we did before, so that's a relief in itself. And then there's the gold mine of coming here and babbling or venting or whatever because you know everyone who reads your posts has either been there themselves or they are a caregiver of someone who has... so everyone knows exactly where you are coming from

Huggggggs,

Cheryl

PS: I was at the dentist today and got 3 fillings on the upper right side. I swear, there's more discomfort once the freezing comes out than there was at any time I was on the chemo! Go figure???

AGGHHHHHH!
Dentists make me woogly! I used to not care much one way or another, but since i've been on chemo I have had 2 crowns and had to have one tooth pulled. All my silver amalgum fillings are coming up or have passed their expiration dates, so I am sure there are more on the horizon. ICCKKK!
mary

maglets

msccolon said:

AGGHHHHHH!
Dentists make me woogly! I used to not care much one way or another, but since i've been on chemo I have had 2 crowns and had to have one tooth pulled. All my silver amalgum fillings are coming up or have passed their expiration dates, so I am sure there are more on the horizon. ICCKKK!
mary

teeth
isn't that weird....I have had to have 2 teeth pulled since being on chemo and no matter which chemo I always have dental pain like every tooth is my head is achin.

I hate the dentisturrrrrrrrr

CherylHutch

maglets said:

teeth
isn't that weird....I have had to have 2 teeth pulled since being on chemo and no matter which chemo I always have dental pain like every tooth is my head is achin.

I hate the dentisturrrrrrrrr

Teeth/Chemo
Isn't that weird? I don't think I've heard any reports that Chemo and teeth are an issue. And, it has been a fair amount of time since I was last on chemo (Oct/07)... but these teeth issues are coming up now! I go to the dentist regularly, so it's not as if it's been years since I was last at a dentist or anything. But in the last little while... a tooth extraction at the back, three fillings yesterday, a root canal/crown coming up in 2 weeks and another root canal/crown that needs to be done. I'm thinking there has to be a relation to teeth and chemo!

Huggggs,

Cheryl

msccolon

CherylHutch said:

Teeth/Chemo
Isn't that weird? I don't think I've heard any reports that Chemo and teeth are an issue. And, it has been a fair amount of time since I was last on chemo (Oct/07)... but these teeth issues are coming up now! I go to the dentist regularly, so it's not as if it's been years since I was last at a dentist or anything. But in the last little while... a tooth extraction at the back, three fillings yesterday, a root canal/crown coming up in 2 weeks and another root canal/crown that needs to be done. I'm thinking there has to be a relation to teeth and chemo!

Huggggs,

Cheryl

same here
You can't find any definite connection,and if you ask your dentist they will mumble something about dryness of the mouth and tooth decay, yada yada, but i think there is a more direct connection. There are more of us who are "suddenly" having dental issues. My sister in law always recommends the use of Biotene mouthwash to keep the mouth moist.
mary

maglets

msccolon said:

same here
You can't find any definite connection,and if you ask your dentist they will mumble something about dryness of the mouth and tooth decay, yada yada, but i think there is a more direct connection. There are more of us who are "suddenly" having dental issues. My sister in law always recommends the use of Biotene mouthwash to keep the mouth moist.
mary

extraction
both of my extractions had to be on rootcanaled/crowned teeth.....makes you wonder doesn't it?

daydreamer110761

CherylHutch said:

Teeth/Chemo
Isn't that weird? I don't think I've heard any reports that Chemo and teeth are an issue. And, it has been a fair amount of time since I was last on chemo (Oct/07)... but these teeth issues are coming up now! I go to the dentist regularly, so it's not as if it's been years since I was last at a dentist or anything. But in the last little while... a tooth extraction at the back, three fillings yesterday, a root canal/crown coming up in 2 weeks and another root canal/crown that needs to be done. I'm thinking there has to be a relation to teeth and chemo!

Huggggs,

Cheryl

dental work while on chemo?
I had started dental work before the cancer thing started, but i was under the impression that I shouldn't have extensive work done for fear of infection? Unfortunately, I was to have my uppers extracted and false ones put in, and the bottoms just the deep clean (years of neglect - long story) - but I stopped, never did ask the onc about it, but thought I would completely overwhelm my insurance company, and again the fear of infection. so, it's ok to continue while going through chemo? a few of them seem to be getting worse, although no pain yet...

Mike49

room temp water and cold sensitivity
I am also on Oxy as part of my FOLFOX regimen. I find it hard to stay hydrated because who craves room temp water. I have started to eat more brothy soups and that helps. The strong taste helps too. I wish you good luck, overall its tolerable but hard to define for people around us how we feel.

I also take some B vitamins and L-lysine amino acid, it seems to help the neuropathy. Ask your oncologist before you take supplement as they and we are all different. I live in Arizona now, although I use to live in Alaska and I just say bundle up, I know you have the right close for the weather. Keep warm and eat well.

MIke

maglets

Mike49 said:

room temp water and cold sensitivity
I am also on Oxy as part of my FOLFOX regimen. I find it hard to stay hydrated because who craves room temp water. I have started to eat more brothy soups and that helps. The strong taste helps too. I wish you good luck, overall its tolerable but hard to define for people around us how we feel.

I also take some B vitamins and L-lysine amino acid, it seems to help the neuropathy. Ask your oncologist before you take supplement as they and we are all different. I live in Arizona now, although I use to live in Alaska and I just say bundle up, I know you have the right close for the weather. Keep warm and eat well.

MIke

thanks Mike
thank you for those suggestions Mike. As a former resident of Alaska I know you will understand this cold! You lucky thing living in Arizona now....nice.

Good luck with you Folfox....hope you continue to be able to get enough fluids in and continue to find your protocol tolerable.

Maybe I should send you some SNOW?? :):)

Best Regards,
Maggie

CherylHutch

daydreamer110761 said:

dental work while on chemo?
I had started dental work before the cancer thing started, but i was under the impression that I shouldn't have extensive work done for fear of infection? Unfortunately, I was to have my uppers extracted and false ones put in, and the bottoms just the deep clean (years of neglect - long story) - but I stopped, never did ask the onc about it, but thought I would completely overwhelm my insurance company, and again the fear of infection. so, it's ok to continue while going through chemo? a few of them seem to be getting worse, although no pain yet...

dental work while on chemo?
I thought the same thing, Daydreamer... somewhere in the tons of literature I got from my first visit to the oncologist, I could swear there was something about not going to the dentist while on chemo. So prior to starting chemo, I went and had my teeth deep cleaned, flouride, xrays, etc. and explained to my dentist that I was about to start chemo so I wouldn't be seeing her for another 8 months. She said that that was a little too drastic... that she had to know I was on chemo and there might be certain things she would put off until later, but that I was to still come in for regular cleanings, etc. So I guess it's one of those things you should talk over with your onc and dentist rather than just stop going

Hey Mags... I'm sure you do have all the winter kinds of clothes to bundle up in so the main thing while on the oxy in winter is to just make sure that you are keeping warm... and not exposing yourself to any kind of cold, be it outside or even inside with the fridge/freezer/cold items, etc.

Hahaha... me being the Vancouver wimp that I am... I don't OWN winter clothes! Luckily, I didn't start my chemo until mid-March so the worst of the winter was over... but I found out very quickly, even on a nice spring day, just a couple of degrees difference (morning vs afternoon) was enough to have me whining about the cold

Huggggggs,

Cheryl

dixchi

CherylHutch said:

dental work while on chemo?
I thought the same thing, Daydreamer... somewhere in the tons of literature I got from my first visit to the oncologist, I could swear there was something about not going to the dentist while on chemo. So prior to starting chemo, I went and had my teeth deep cleaned, flouride, xrays, etc. and explained to my dentist that I was about to start chemo so I wouldn't be seeing her for another 8 months. She said that that was a little too drastic... that she had to know I was on chemo and there might be certain things she would put off until later, but that I was to still come in for regular cleanings, etc. So I guess it's one of those things you should talk over with your onc and dentist rather than just stop going

Hey Mags... I'm sure you do have all the winter kinds of clothes to bundle up in so the main thing while on the oxy in winter is to just make sure that you are keeping warm... and not exposing yourself to any kind of cold, be it outside or even inside with the fridge/freezer/cold items, etc.

Hahaha... me being the Vancouver wimp that I am... I don't OWN winter clothes! Luckily, I didn't start my chemo until mid-March so the worst of the winter was over... but I found out very quickly, even on a nice spring day, just a couple of degrees difference (morning vs afternoon) was enough to have me whining about the cold

Huggggggs,

Cheryl

Avastin and dental work
Saw the mails on dental work......it is the Avastin that causes problems;
it retards healing, nothing to do with infection....but slows down healing
of any kind so I think any serious dental work outght to be delayed but
cleaning might be ok. I had a crown on a front tooth that broke and now
I would have to get an implant so I am going around snaggle toothed and
don't know when I will get implant.....they are so expensive and take
several months to be fitted, heal, etc.

lisa42

You can do this, Maggie!
You can do this, Maggie! I'm glad you came through the first treatment alright.
Just watch out for the neuropathy- if it doesn't go away after a day or two, definitely report that to your oncologist/nurse & be taking B vitamins and L-glutamine & someone else mentioned L-lysine. My neuropathy is soooo much better than it was after taking the B vits and glutamine (I would have tried the lysine then too, but didn't know about it).

About the mentions of dental work during chemo by others... after 6 months of chemo, I was in need for the very first time for two crowns on upper molars. I never had such extensive work before- I was always very fortunate and never really had to deal with more than just a couple of cavities needing to be filled after one of my pregnancies. I can't believe it was just coincidence- I think something about the chemo, the premeds, the dry mouth, or a combination of all those things did a number on my teeth. All my dentist asked before doing any work on me while on chemo was that I take a particular antibiotic (can't remember which one). I had the work done & my mouth is doing fine now (I think), but I'm on chemo again, so I will make sure to have my teeth checked on time.

Take care, everyone!
Lisa

maglets

lisa42 said:

You can do this, Maggie!
You can do this, Maggie! I'm glad you came through the first treatment alright.
Just watch out for the neuropathy- if it doesn't go away after a day or two, definitely report that to your oncologist/nurse & be taking B vitamins and L-glutamine & someone else mentioned L-lysine. My neuropathy is soooo much better than it was after taking the B vits and glutamine (I would have tried the lysine then too, but didn't know about it).

About the mentions of dental work during chemo by others... after 6 months of chemo, I was in need for the very first time for two crowns on upper molars. I never had such extensive work before- I was always very fortunate and never really had to deal with more than just a couple of cavities needing to be filled after one of my pregnancies. I can't believe it was just coincidence- I think something about the chemo, the premeds, the dry mouth, or a combination of all those things did a number on my teeth. All my dentist asked before doing any work on me while on chemo was that I take a particular antibiotic (can't remember which one). I had the work done & my mouth is doing fine now (I think), but I'm on chemo again, so I will make sure to have my teeth checked on time.

Take care, everyone!
Lisa

ringing a bell
Hi Lisa...the tooth thing seems to be ringing a bell with lots of people....there must be some connection.
Thanks for your tips about the neuropathy, my onc mentioned glutamine but I haven't purchased it yet. I have meaning to drop you a wee line because I notice you are a teacher....I too am a teacher, elementary art but I retired when I started my first chemo about 3 years ago...you know how germy those classrooms are. I miss the kids so badly and I am sure your life is very different without your job too. It is good that you can look after yourself at this time though. I started a three ring binder with dividers yesterday as my chemo book....you would be so proud of the "little miss organized in control teacher" look of it all:):):)lol like I will probably keep it up to date for a month

Thanks for your very kind words
Hugs
Mags