October 2011 Chemo group

Pert1 Hi: Red Devil is what they call Adriamycin or Doxorubicin. Got it's name because it is red and makes you pee red for a couple of days till it's clear from your system- sort of freaky! My chemo is DD(Dose dense tx every 2 wks) A/C (C-Cyclophosphamide) for 4 sessions, then DD T (Taxol or Paclitaxel) for 4 sessions, then rads ( maybe 16) following. I should be finished up in Feb. if everything goes along as to schedule. I don't know if they use the same drugs in the States - I see some of our ladies get different things for nausea. Do you go to a major cancer clinic? I use a Biotene toothpaste and I like it. When you have dry mouth it increases spit and is quite mild. I also use the Biotene mouthwash every night to gargle and rinse my mouth just before bed and it has kept things in failry good shape. Love the idea about snow cones...they haven't offered any tasty syrup on the ice chips as of yet- wouldn't that just start something! They do bring around cookies and drinks whenever you want and that's nice. I too, had constipation the first tx so I take Soflax ( a stool softener) starting the day before ( 1,am and 1,pm) and for a few days after and it has worked great. I wish they had told me that before 1st tx 'cause it wasn't fun!

Yes- I have weird things going on with body temp....sometimes cold and sometimes warm- usually at night for the warm part. I have cuddly blankets on the couch and they keep me cozy. Don't know about you, but I feel better if I am cool and then at least you can add clothes. I'm glad I'm not going through this in the summer-Idon't think I would tolerate that as well. Lots of odd things thrown at us eh? Keep well,      Hugs, Juls

Hi ladies, it's day 8 for me after chemo #2 and I'm back feeling human again. Just like last time. 

I'll try to comment on some of the questions I've read above.

I haven't had any trouble with mouth sores, but my tongue is kind of sore so I use Biotene mouthwash after brushing and it soothes. I bought a tube of mild children's toothpaste to use when the minty regular stuff burns.

Hot and cold -- crazy for me! The first week I have pouring sweats alternating with freezing cold, so I'm putting clothes on and ripping them off constantly. My feet are like ice the first few nights so a down throw just over them helps a lot without overheating my entire body. But I need to shower twice a day and change clothes all the time. Thank goodness for washers and dryers!

I love my port, it went in ok and through 2 chemos without any discomfort, but when I went to a different clinic to get a blood draw it really burned so I asked my MO for an Rx for numbing cream to use from now on. I'm already maxed out on stress just dealing with everything so it doesn't take much pain to put me over the top. Or much of anything to make me cry.

I went through this second round without someone staying with me afterwards, and never again! I thought I was prepared, and friends helped with food and errands, but it was so intense it scared me. The extreme fatigue and weakness made me think I would die, or wish I would die. And I wasn't even nauseous except for one day. So my sisters will be staying with me after the next two rounds. So much for strong and independent - this isn't the time to be that way! 

So now that I feel good, and my twilight zone brain is over, I have two weeks ahead of feeling (mostly) good.

Hang in girls, we can do this!

Barb 

Ladies - I had my port removed today, five weeks PFC.  And it was no big deal.  I felt one needle stick - the numbing agent.  After that, there was no pain, just a little pulling to get it out and a couple of stitches. 

Hello Oct chemo gals,

You don't know me but you saved my a*s this weekend. I had my first chemo TCH Wed and was feeling good until Friday night. Then I got completely nauseaus and I laid in bed basically until Sunday at noon so nauseous I couldn't watch TV, read...any movement or stimulus made the nausea (and this was on zofran and phenergen) worse. Then I got on the discussion board and saw everyone saying "call your doc if the meds don't work". So I did and she put me back on steroids 4 mg and Ativan along with the zofran. I felt way better. From functioning at about 30% to 75%. Thank you,thank you thank you. Today, 1 week out I still feel queasy, but nothing like that weekend.



I'm suppossed to be weaning off the steroids and the Ativan, but it's not as easy as it sounds. I thought the nausea would be gone by now...



It's hard to drink enough.



The overall positive tone of this group amazes me. I went into my first chemo tx feeling very accepting of it. I got there by recognizing that cancer is a formidable illness, that it had fooled my immune system into not fighting it, and that the chemo drugs were my helpers to be well. But the way I have felt since that first tx is like my body is not my own. Don't like it.



Thanks for being there to write to and learn from.

I asked my onc about what to do if I got a cold, and she said to just do what I would normally do...no restrictions on sudafed or antihistamines or anything. I did have a sore throat and low (99-100) fever my first cycle; she said just to gargle salt water, but to get to the hospital if the temp got to 100.5.

I've met a couple women who did get bad infections while neutropenic and had to be put into isolation at the hospital...definitely hoping to avoid that. A friend who works with pediatric cancer patients warned me that when you're neutropenic things can get out of hand very quickly...within a few hours....so not to ignore a fever or other sign of infection but to call the onc or get to the ER right away. But just run of the mill cold symptoms aren't an emergency, just more to add to our misery. My second cycle has been easier than the first so far, and I think it's because I don't have the sore throat on top of the chemo sfx.

I've been so paranoid about germs it's like I have OCD now...washing my hands so much they are peeling and itchy. I need to get some milder soap. And here I am so paranoid about having to go to the ER, the other night my husband had complications from a routine procedure and I ended up driving him to the ER! I wore a mask while I was there. I visited him for a while yesterday but he really wants me to stay away from there...fortunately he is coming home today. I'm looking forward to the company. I work at home and haven't been working much during this, so it gets a bit lonely and dull being alone all day.

Hi to ALL!

I went to my chemo class yesterday ... starting chemo next Wednesday ... and, the nurse told me that I would have to give myself shots of Neupogen at home after each session ... I'm not quite sure I can give myself shots ...

No one had mentioned this to me until yesterday ... after I got home, I started researching and found that Neulasta is often given instead of Neupogen ... one shot of Neulasta is needed versus many shots of Neupogen (as I understand) ... however, apparently, the Neulasta is much more expensive, and I'm not even sure if my insurance covers the costs of Neulasta ...

And, I'm also confused about the side effects of each drug ... could anyone give me information about these 2 drugs (i.e. side effects, is one better than the other, the associated costs and do most insurance companies cover the cost of Neulasta?)  

Any information regarding this would be much appreciated.  At this point in time, I'm having a hard time navigating through all this  ... at every turn, something "new" is being thrown at me!  I'm completely overwhelmed! 

HUGS!

Love~Peace~Joy

Trinity

Trinity - call your insurance company and find out for yourself.  Neulasta is a whole lot less hassle.  And if your insurance company will allow your infusion center to administer the shot the day after treatment, it will be easy-peasy.  Unless you live far away and you want a visiting nurse to call on you...   You need to ask a few more questions of your oncologist.

Normandy..I can't really answer your question but I would suggest that you call your oncologist to see what they recommend. I've heard that's it's not recommended but I'm really don't know for sure. It could also depend on how long you need to be away and for what purpose.

Hopefully someone else will have better info for you.

Regarding the Neulasta......I know I have insurance coverage for the actual medication (80/20), but I must not have coverage for a nurse to come in and give the injection.  Walgreens delivers it to my home the day before or the day of chemo and then my husband gives me the injection in my upper arm the day after.......  So glad I don't have to travel back to the hospital for a nurse to give it to me, or bother with a home health nurse???   It's a simple injection.  Didn't anyone else's oncologist give that option.....to have a family member give the injection??  

Hi Everyone.  I'm new here and I just don't know what I don't know.  I had my first chemo on 10/26 and aside from some being a little sick to my stomach and tired, it hasn't been too bad.  Although I do feel a little better every day.  I'm afraid it will get worse though.  I'm on the A/C for 4 treatments and then Taxol.  I had to give myself Neupogen shots for 5 days but the hubby did it for me.  About the only difference I felt was soft stools which was a welcome change after the constipation.  The last couple of days I feel like I have heartburn and I never get heartburn. Has anyone else experienced this? 

Lizzybc: Welcome to the group NO ONE wants to join, The SE, nausea, Heartburn, constipated, joint pain, fever forum!!!!!!  I too have had heartburn this new round of Docitaxil, I keep telling myself only 1 more Terry, Only 1 more.....  I eat Malox chewables like candy...... Its horrible. Havent had much of an issue with nausea ever since the start of treatment  Aug 4th, I had 5 shots of Neupogen in the beginning while we waited to make sure the Neulasta was covered with the Union, and YES it is covered 100%  so as oppsed to 5 shots of Neupogen @ $1100.00 We get the single shot of Neulasta @ $ 2,482.31  per Injection, once every 3 weeks, only 1 left of that too :-) and My chemo nurse gives me my injection 24 hours after treatment, she always has... and YES do take it out of the fridge at least 2 hours before if its COLD you will Suffer for sure.......Trust me on that one Ive done it LOL 

Joint pain WOW yea that hurts.... Its subsiding today after day 8......  

Good luck in your treaments, and we are here to Listen to your thoughts, fears, questions, VENTS, anything your heart desires,  although some of us have a hard time spelling, we just chalk it up to Chemo Brain, or Cotton brain LOL  

Terry71 - LOL! chemo brain for sure!

Quick recommendation about heartburn - I found Zegerid OTC to work very well. I just take one per day as needed, though it came packaged in sets for 14 day doses. 

Hi Everyone!

My computer charger broke so I had to order a new one and I am up and running again! So much has happened to all of you since I last was on! Welcome to the new members! Sorry you are here, but the group is so supportive! Thank you Ladies!

For my 2nd treatment I was switched to A/C from T/C. I am 4 days out and feel I am fighting a new battle now. I feel so different on this. I am so much more tired - napping a lot and nausea is more prevelent but I have been able to keep it at bay so far. I am starting to wean myself off the meds so I am a bit concerned about how I will do tonight and this weekend. No Neulasta shot this time! I have been able to eat more types of food this time on T/C everything tasted horrible. 

I have so much respect for those of you who are working. I don't know how I could do it! 

Terry thanks for the laugh!

Have a great day everyone! 

Thanks everyone for their input and support.  I'm going to call the onc advice nurse and see  what's best to take for the heartburn.  I have Kaiser so I don't think the Neulasta shot is a possibility but I do like the thought of only one rather than 5.

@Julsjewels11:  I like that "you don't have to like it - you just have to show up.  

It's cold and rainy here in Central California but I need to get in gear and get to work.

Have a great day everyone!