January 2012 chemo

I just found out that I'm scheduled for the echocardiagram on Thursday and starting chemo next Monday, 1/23.   I don't know why it takes them so long to get me in.  That is 2 weeks after I was first supposed to start before the port placement collapsed my lung....   

I know I am actually lucky to be starting later because I will be able to learn from all you wonderful women.  I hope I am as brave and have the strength as all of you.  I feel very tiny, shaky and scared right now.

Hi GeorgiaRai from a fellow GA girl.   I can't believe that doctors do a chemo treatment the same day as port placement.  I requested a week for the port to heal first as I had heard that the first 4-5 days are the worst pain after getting a port, then to put chemo pain on top of it just doesn't seem to be a good idea to me.  Give me and my body one thing to deal with at a time, Thank YOU!    I'm glad I did wait because the port placement not only was very painful but led to a partially collapsed lung which just got healed after a chest tube was put in.  I hope your port and treatment go smooth and wishing you the best. Join in and let us know how you do.

FLDREAMER, I understand exactly what you're saying.  I made it through the surgery & recovery like a bull in a china shop but bottomed out when I was told I had to have chemo -- and then went lower when the MO increased the number of treatments after the oncotype results.  I have not worked since the surgery -- am out on short term disability until 2/20 but the MO is making noises about not wanting me to go back until the chemo is done in May.  I am single and have no family and the bills are frightening.  I've been trying to sign up for any foundation that might offer copay relief to get some help because the disability check doesn't even cover the mortgage! Every time I go to MO it's another $50 co-pay and whatever $coinsurance plus the annual deductible and out-of-pocket $ (not to mention another RX$).  I'll make it through about 6 months total but then I'll have to hit the retirement accound, there's no other choice. 

Thanks for the advice, janetanned & CharB.  I guess I'll just have coffee at one minute till midnight tonight and enjoy it as much as humanly possible, in case my taste for it goes away.  I hadn't thought about associating it with treatment, but that makes total sense. Thanks for pointing it out.

I was a little concerned about chemo immediately after my port placement, CatWhispurrer, but everything got scheduled on short notice after the holidays.  I didn't want to post-pone my infusion since I'd already come to terms with it and was emotionally ready to get started.  Thanks for the good wishes; same to you! 

I just thought of a question which is very important to me.  I am scheduled to do the chemo on a Monday and receive the shot (whatever that is) on Tuesday.  Within a week or two of starting this regimen, I will be trying to return to work at least part time.

Is it better to schedule the chemo for a Thursday with the shot on Friday?   Would that give me the weekend to recover so I could be a productive worker on the following Monday, Tuesday and Wednesday?   

 I do office work so I'll be sitting at a desk when I work.  I'm worried about the fatigue as well as the nausea/etc.   Comments, suggestions anyone?

FLDreamer- I am on TCH also, and when I told my MO I had the most help with my young kids over the weekends, she told me to schedule my chemo for Wednesdays.  She predicted that Saturday and Sunday would be the worst for me.  I have had 4 of the 6 so far and have to agree with her.  Though I have had a harder time than most with my SE's, thus far Thursdays are okay, Friday late afternoon/evening gets rougher, and by Tuesday/Wednesday I feel more back to normal.  I admire all of the women working through this.  My best friend is a young mom recently diagnosed.  She is on a different regimen but has kept working without adjusting her schedule much.  She gets chemo Tuesday, takes off Friday, and has yet to miss a Monday.  Good luck to you!

I had my first AC on Thurs, Neulasta shot on Fri. I was nauseaus Fri, Sat & a little bit on Sunday. Manageable though. I have the luxury of working from home which I'm going to take advantage of this week - except for Thurs & Fri - doc appts. Ugh...I'm getting tired of them already.

 I also had a very tearful breakdown earlier. I'm not used to feeling "sick." Before BC, I was a healthy 47 year old woman with allergies and asthma that popped up occasionally. I'm already sick of feeling sick. For those of you that have been through this already, when will I start feeling better?? I know I'm whining....can't help it tonight. I already tired of sitting in the recliner watching TV...I should be up doing laundry, straightening the kitchen, scrapbooking!! Anything....ugh.   

Kite - I think the same thing too -- why my boys?! They don't need a sick mom now.....I've got one in 8th grade and that whole high school thing is approaching and my youngest was just diagnosed with ADHD. You're right...it could be so much worse. They still have their mom. Even when I feel crappy. It just sucks. I thought I could handle this better.

So, how does everyone feel the next day after chemo (day 2)?  I know this is the day of the neulasta shot.  I am starting AC next Monday and my boss called me tonight to ask what days I think I can work next week.   I work part-time as a vet tech so it is a pretty demanding, on my feet, job.  I was thinking of telling her day 2, 5 and 6, which would be Tue, Fri and Sat.  Also, the shift is from 3:30 pm to 9 pm and Sat is noon-4.  there is a 8-10 AM morning shift weekdays but I don't think I could bring myself to do those.   Any thoughts on this?   I know it is just going to be a guess until I go through it myself but I would at least like to try to guess the best days to try based on your experiences from those who have started.

CharB- You are handling it just fine. Who says we have to do it better anyways! It's a crappy ordeal no matter what. I've a case of the "what ifs" too and boy that doens't take me happy places. I think a lot of my whining is coming from a place of pure exhaustion, and defet. Being sick doesn't help our psyche at at all. On top of that I started my pierod today. JOY!

CJRT-- Thanks for the info, I was hoping it was mild if nothing at all. I want to at least have half a brain when I go to class the next day. I am so scared to start...I am really doubting if I can do it. 

Janetanned-- Thanks, for the compliment. That's my new do for the time being.

I think what you are doing is great. I also use humor, if I didn't it would just all be too serious. I am sorry you and your siblings had to suffer silently (and your mother) I have never had anyone close to me die, get sick, or had any trauma really. My grandma had BC and I loved her dearly but I was 18 and lived 800 miles away. I remember realizing how special I was to her at the very end of her days. So I never really "got" it till now. 

I would want to be involved as much as my mother would let me if it were her. Good for you for breaking the cycle. 

I've just done my first FEC,



Tx was last Thursday afternoon (worked Thursday morning and most of the afternoon)



Took Friday sick leave - was emotionally shattered and tired but no real nausea or anything.



Saturday I felt a little nausea but it was still covered by the Emend and Kytril that I had for Friday/Saturday.



Sunday I was very nauseous and tired because had run out of everything except Maxolon that wasn't covering it.



Monday finally got to my PCP who gave me two days supply of Zofran and once I took that I felt fine.



Tuesday (today) - felt a little nausea this morning but managed a 1.8mile walk, shower, make-up and a trip to the hospital for an initial appt with RO. At home now and feeling fine. Definitely could have worked today if I hadn't taken sick leave.



Tomorrow I am planning on a full work day (7 hours) but from home and Thursday/Friday I am planning on going into the office for full days.



So, if I can now make sure I am covered properly next time for the nausea I will be taking the Friday as sick leave. Monday, and maybe Tuesday I will work from home and then will be back in the office from the Tuesday or Wednesday.



All of that is without factoring in any unforseen stays in hospital due to SEs...



In terms of staying "regular", I took a Coloxyl/Senna tablet every evening from the evening before treatment. Drank about 150mls of prune juice every afternoon and have drunk a lake's worth of water and other fluids before and after treatment. Has kept me non-constipated so far...



regards Jennifer

Hi all,

Well I am day 18 after first FEC infusion, and I have to say it hasd been pretty hard.

 My biggest SE has been mouth ulcers and associated sore mouth.

 Nysea the first few days I took Maxalon but it did'nt work so went to the next level and took Stemital which has been fine .  

Mouth ulcers were really bad. had to see GP who gave me 2,000mg amoxil last weeek and rang onc and she told me to rinse my my mouth with asprin .Both of those helped alot. Lost 5 kilos that week, only on water and icepoles

. Still have sore mouth , teeth, gums, tongue etc, but bearable , must be because have managed to put on 3 kilos this week!!  Have found having yogurt ( which I had not  been having before ) before and after every meal and rinsing my mouth out with water and bicarb to be really helpful in calming things down.

Depression hasd been pretty bad but on Cymbalta for that so just have to keep putting one foot in front of the other. I go to the pool everyday and do water classes which has been a great outlet at the moment  .

 For those with Fibromyalgia which I have ,as my Rhuemy said the steriods really do dampen down the joint and muscle pain. Normally i take Plaquenil and mobic, but have stopped them while on chemo.

Then on day 16 the really bad stuff.... hair falling out!!! I must say that although I knew it was going to happen and I was all prepared, have the wig, scarves etc etc  and I had had it cut really short when It came away in my hands after a shower I just bawled my eyes out!!! It was a terrible feeling and 2 days later I feel the same. Its not like my hair was long  or beautiful or anything its just that it was mine and there goes another thing out of my life, first boob now hair . I feel like I have a sign on my forehead  " Cancer"   Stupid I know, but that's how I feel. Got it all shaved off yesterday, even had that bit organised ... Family, friends all saying don't worry it will grow back ( when?, how about tomorrow!!) etc etc, don't care, want to throw a tantrum and say its not BL@@dy fair.. life sucks... there thats me done... sorry for dumping,, maybe when I read this back I will be able to laugh at myself for being such a ninny.. and for those to get to this stage yet  take no notice of me ,its like they say  .. its doable... yep, but its hard... waiting now to see what infusion 2 brings next weeek

.'By the way very hot and sunny here in Melbourne Australia..no hair to catch the drips off my head though, god this is weird

Lynne

I read somewhere else about using fake tattoos is the form of butterflies. Kind of a new beginning. I think I might get some to try when my hair goes. my (college age) kids would get a kick out of it. Nothing wild maybe something pretty behind my eat. Anyone tried unusual things?

PCBarbie - By the way, thanks for the tip on the cotton gloves. My finger tips are much better.

Hugs to you RC1221,



I know many of us are struggling with having felt so healthy and active and then having to allow people to make us sick :-(



Regards Jenn