August 2011 chemo, anyone w/ me?!

My restrictions on my left side is 100% lymphedema risk. I also had 19 removed though.... I know someone who had nodes on both sides and has all needle sticks through their feet, OW!!!



If I hadn't had so many nodes removed I think I would have tried to skip a port....but being down one side for use I didn't want to risk a vein blowing.

welcome, meholly, mommy x2, and pamela!!  you will find lots of support and information here. i'm so grateful i found this site.  

i'm having my TCH #2 on monday.  i had minimal side effects with #1 and i think it's because i followed many of the suggestions found here.  i took claritin the day before, the day of, and several days after my neulasta shot; i have sugar-free lemon drops that help with dry mouth and supposedly, when they're flushing your port with heparin (so you can't taste it, i think, which i didn't). i already had otc anti-diarrheal meds and zantac for heart burn (which i did get) and for my next tx i'm taking 4 packages of frozen peas for my toenails and fingernails when i'm getting taxotere.  supposedly, it helps keep your nails from loosening or turning a dark color.  I've read several articles about this and i think it's a good thing to try.  also, i have used biotene several times a day since my first tx and i got no mouth sores.  there's a prescription for lidocane cream that i got from my onc and i put it on my port and covered it with plastic wrap an hour before infusion and i think it helped tremendously.  

 everyone's different, of course, but these are the things that helped me so far.  i had about four days where i didn't feel 100% and only 1 when i felt a little queasy, but after those 4 days, i've felt just like my old self.  i just hope i do as well with tx #2.

good luck to all of you who are just starting tx. 

Yes, welcome to our group meholly, mommyx2 and Pamela! 

vtEllen - The Biotene is like, too sweet for me or something. I woke up in the middle of the night with dry mouth, went to the bathroom and swished it around and was not happy about the taste. Maybe it's just me?

YaYa5 - I have also read that about the ice/frozen veggies for nails. I also read that is can help prevent neuropathy if you have the ice packs on the soles of your feet and palms of your hands, which I am so concerned about when I have to do my Taxol rounds. I mentioned it to the nurse but she acted like she had never heard of that, but I'm still going to do it.

Regarding node removal, I had 5 taken from my right side and I can no longer have blood pressure or blood draws on that arm, I guess forever, due to the LE risk. There are just way too many things to worry about with this CRAP! 

Thanks Ellen, yes I did wonder if some of the pain issues are from the Taxol.  I am tired of feeling woozy so will stop the pain meds today if I can.  Off out to walk the dog for a bit, that always helps.  I find sitting to be the worse for some odd reason, or maybe it's just my chair.

vtellen, yes, the zantac seemed to work well.  i also took a few tums, but relied mostly on the zantac.  

kasi, i've found that the onc and his nurse say they've never heard of the things i've learned on here.  it could be that they're just hesitant to tell us about things that aren't medically approved or something.  one of the chemo nurses told me about the port cream and i went right back to my onc's office and asked for a scrip.  i also asked for zofran just in case i got more nauseaus than last time.  i just want to be prepared, and i've learned that unless you ask for something, you won't get it.  and i'm with you ... ice on the fingernails and toenails no matter what the dr/nurse says!

koala, it's a hard decision to make, but any extra protection is worth it, in my opinion!

chrys, i hope your body pains leave you soon.  i agree with your nurse ... my worst days were day 4-8.  did you take claritin for neulasta se's?  i like the biotene, too! 

YaYa:  I did take the Claritan before the Neulasta and a few days afterwards. I actually still had bone pain on Saturday, but it was fine on Sunday.  The bone pain from Neulasta was definately recognizable as true bone pain (at least to me it was.)

This muscle problem, from what I've been reading is a side-effect from the Taxotere. I've got a call in to my oncologist's office just to let them know what I've been dealing with -- but I do believe it's some type of Neuropathy effect  (check out the "Taxotere is a Nightmare" thread started Dec. 2010 and last post July 2011) that a small percentage of patients exhibit.   Why me....   

I have tingling in my hands too -- I just pray this doesn't get worse with subsequent treatment, because I won't be able to hardly get around.

vtEllen & Yaya - I actually think they are told to say "I've never heard of that." I've asked a million questions about side effects I've heard about and things to do to try and alleviate them. For example, according to real people AND books, it's common for your hair to grow back in gray for awhile, even if you weren't gray to start. The color often times come back, but it can come in a yucky gray color. When I asked an onc about this (I think I've asked 2 of them), they both said "I've never heard of that." Grrrrr! Yes, it happens, I wish they would just admit some of this stuff. And the fact that Taxol can cause neuropathy...asked my onc about that and she was like "No, we would adjust the drugs if that was a side effect, and it's not permanent." Yes, it is permanent for some people. 

So Chrys - yes, I would think that what you're going through could be SE from the Taxotere. I'm so sorry, I hope that it gets better. I've read that taking L-Glutamine (a supplement) can help. I'm planning on taking it through my Taxol rounds.

chrys, I am so sorry you are having such a hard time, but it helps me as I thought I was the only one too, or just whining about it more.  Makes more sense that this is muscle pain from the chemo now.  Walking does help me, excpet I don't have a lot of energy. I am day 5, chem on Thursday so am I 5 or 6? how are you counting? Anyway, I had really hoped to feel better than this by now, but it will happen I know, hopefully in time to enjoy it before the next session.

I have a grandbaby due any day now and I'm reallly hoping to be able to be there for the birth, I'm thinking the excitement will pick me up a bit?!?

Kasi - back to work!  hahaha..

So far, from taxotere, I haven't really had much SE's.  It's hard to differentiate, what is doing what when you are getting all these things at the same time.  But for me, a new SE has been my skin peeling from my fingers.. Is this happening to anyone????????  It's pretty nasty.  No muscle or bone pain, an overall feeling of despair is more like it....... *sigh* 

Zanoza, interesting info about the oncotype test in Canada. It was never mentioned to me, probably because, as  you say, chemo was pretty much a given in my situation.

Grimbol & YaYa5, how exciting...new grandbabies!  That's awesome.

Grimbol, I count Day 1 as the day you receive the chemo. So, if that was Thursday, you're at Day 6.

Sorry ladies I can't weigh in on the great Biotene debate of 2011.  Haven't tried it!

Had a great morning back-to-school shopping with my two girls this morning. I think they're all set now! I'm actually not looking forward to them going back to school this year. It's been nice having them around while I've been off work over the summer. They keep me busy. I think the days will seem very long when they start school.

hahahhaah vtellen!!!  you know, I still shave down there daily, so I haven't noticed if hair isn't growing back or not, but now that you mention it, it doesn't get as stubbly.. that's so funny!!!!!!!!!

Grimbol -- thanks...I hope you are feeling ok as well.   I count day #1 as the day I started chemo, so I'm at day 6 or 7. I think that's right lol....Tomorrow is 7 days (one week) from my transufsion last week. Congrats to both you and Yaya on the impending grand-baby. That's awesome

I did speak with the Oncology Nurse, and it is indeed the Taxotere. *ugh*   She said it should resolve in a day or two, as your body goes in to 'crash' mode after the steroid dosages -- however, if I'm still experiencing issues by the end of the week, I'm to call on Friday.

I have to vent: My mother is freaking driving me INSANE. I DO NOT have her come see me or go with me to appointments, etc since I was diagnosed; she just can't handle it emotionally. She is over now, just for a quick visit and to help change my kitty litter pan (my husband has a consult with a waterproofing company and my son just went to work), so she stopped by to help. She keeps staring at me with pitiful eyes and keeps insisting that I "have the flu".  She also kept saying on the phone yesterday that my body was aching due to all the rain we had yesterday.

I had to keep reiterating that I do not have the flu -- but am experiencing chemo side effects. Then she just stands there and looks distressed. I know it's hard to see your child go thru this, but she's nuts. She then says "Oh well...when does it leave your system....I thought since you had it last Wednesday, it would be gone by now...they have to give you more -- what if it's not out of your body"... HUH?!?  I actually asked her (politely) if she could go home. She's just really irritating me.

Sorry, I probably sound like a horrid daughter, but I know my boundaries with my mom and she's just not a person I can get support from emotionally with this stuff.

Chrys, lol..  I feel the same way about my mother.. She means well, but its stressful because she doesn't understand the process of the chemo.  She took me to my first chemo infusion, and made me sooo stressed out, I wish I would've went alone!   Anyway, may I suggest you tell her to educate herself on chemotherapy?  maybe get her a lil pamphlet to read?    My mother said to me yesterday, I think your hair is starting to grow back..  HUH??   it's still falling out as we speak!!   ok enough of that.  Mom's mean well, they are going through alot too.. They have just failed to educate themselves, that's all.....