April 2010 starting chemo

SGJ05

Julia123, While I know your post was a rant, I have to admit I chuckled a bit about your friend telling you you should better after each cumulative round of chemo., lol. I have one particularly meaningful person in my life who only wants me to remain upbeat and happy and never wants to hear that things are rough and if I say anything is tough, her life is tougher, lol. I have chosen to not talk to this person during the bad days and seek my support elsewhere:) I guess we all have them in our lives, right? Well, I am sorry about your bad reaction to the Decadron, are there any other steriods they could try or do they all produce the same possible side effects? I am keeping my fingers crossed for you that things go better the next round.

curious_one

tpcjkk--Julie--Thanks for the update on the full course of AC treatment.  It lets me know what to expect.  I've had 2 of 4 AC treatments, with the next one scheduled for this coming Thursday.  The first week after treatment I sleep mostly.  I don't feel like I'm coming alive until a week after treatment.  Since I have treatments every 2 weeks, it's one so-so week and one better week.  This past week, my hair has started coming out in handfuls.  I get the feeling that no hair will be left by my next treatment.  Then it's on to 4 treatments with Taxol, plus Herceptin treatment.  Oh well, at least 2 down, only 6 plus to go.  Then more surgery, then radiation.  I'll be glad when the treatment is done.  In the meantime, nothing tastes good like it used to.

caltex_catlady

Julia123: I loved your rant. There are always those people, aren't there. I'm like you--I don't do much complaining, even when I surely could, but I'm not one of those people who are (falsely??) upbeat *all the time*. I just don't think it's realistic to be positive *all the time* so I don't worry that I'm not. It's just sad when these supposed friends don't get the hint and knock it off. Luckily, I haven't gotten much of that. In the early days, lots of people kept saying "oh, but it was caught early, so you'll be OK" (and that was before we actually knew whether it was caught early), but mostly they just ask how I'm doing and leave it at that.

I'm sorry to hear you have problems with Decadron. My onc told me I'd be taking the steroids all during the upcoming Taxol treatments rather than just the first few days, so I'm wondering what the effects will be. I've heard about weight gain, agitation, sleeplessness, etc. I'm sure a clown wig will make it all better

Karen

JenC

Hi all.  Hope you are all having an ok weekend.  I had my second AC on Wednesday and today is the third day of the steroids again.  I swear day three is the worst with roid rage.  I cry at the drop of a hat and have the shortest fuse of my life but it will be better by tuesday.  I was told that after my 4 AC treatments when I start the Taxol that I will only have to do the steroids for the first treatment so I am really looking forward to that.  Sorry some of you are having such a hard time with the roids to.  It really sucks.  I just keep thinking only 6 more treatments and I am done.  Still not sure about radiation yet, I wont have my radiation consult until I get towards the end of chemo but at least the surgeries are over.  Three since January is quite enough.  Have a great night ladies and stay strong.

marcy4

My AC treatment has gone well.  I had some pain this week from the Neulasta, but nothing too bad.  Like many of you previously.  I too look forward to the end.  I sometimes find it daunting when I think of all that is left.  2 more ACs and then 12 weeks of Taxol, then radtation, hormones....  I am not looking forward to the weekly trips, however, they will pass too.  I try to focus of getting out and about as much as I can during my good weeks, and try not to think of myself as being sick at all.  My husband and I are hoping to get away for a weekend in early July to have a mini vacation before the second phase starts. We are very lucky to have supportive family members who have helped us out with the daily routines of getting kids to appointments and sports events.  I don't know what we would do without their extra hands. 

I know that we will all get through this, with both good days and bad days. When people comment on my strength and good attitude, I often wonder what other options I really have.  I don't feel like an exceptionally strong person, I am just dealing with the cards I have been dealt in the best way I can. 

Char2010

I agree - we have no choice but to get through this.  I have been very fortunate since I have had very few friends say anything inappropriate / irritating / etc.  I know they are scared for me and want to be encouraging so sometimes I put myself in their shoes and think "what would I say" - and the reality is that I am not sure what I would have said - I probably know better now.

I am scheduled for my third round of TC this coming Friday.  And then one more in June, a four week break and on to radiation (and then hormonal drugs as well).  Not looking forward to any of it.  But then what choice do we have?

 Have scheduled a fun weekend with friends during the gap between chemo and rads and a vacation for next April.  So when all this gets overwhelming I "try" (sometimes it does not work) to think about those plans rather than what is happening with all of this crap.

The TC has not been too bad so far.  Both times I have had an allergic reaction to the T but luckily the nurse sits with me when she starts me on it - and has ended up giving me drugs to counteract so I can continue.  Hope the next two go OK as well.

Do get very tired on days 5-7 and then start feeling better.  Tough to continue working full-time when you feel so worn out.  Also, drippy nose this time around.  Lost my hair 14 days after round one.

Good luck to everyone.  May your treatments go well and may we have this behind us soon.

JenC

Well got up this morning with really bad joint pain,assuming from the neulasta shot on thursday.  Hoping that today will be the last day of this.  I was sore yesterday but much worse this morning.  Hoping that the day gets getter and the pain subsides.  I think this is the worst part for me.  Have a great day ladies.:)

Julia123

SGJ05 - no, by all means, chuckle. :-) I meant it to be humorous, and while stuff like that can be irritating, I am blessed with many more friends and family who know to simply say "Aww, I'm sorry" or murmur comfortingly and just leave it at that and let the conversation move on to another topic rather than prod me to be upbeat when I feel bad. As others have alluded to, nothing makes you understand this experience like going through it - while I don't think I'd have been one of those who pushed someone to feel differently than they did, I also don't think I'd have really understood this in a dear friend either. After this though, I will! A part of my reactions now too are about me always being "the strong one", and having to unlearn some of that. I've had to learn to ask for help, and realize that it's ultimately me who has let my loved ones believe and expect me to be invincible in the past, so I'm probably a smidge more impatient with responses that still want to force me into that role right now that I should be.

 And unfortunately, no, I'm told there are no other steroid options that won't be essentially the same issue, but thank you for your good wishes! Maybe knowing what is causing it will help some too, as the first time I had no idea and so I thought I was losing my mind...LOL

 Caltex_Catlady - loved the "you caught it early!" stuff! LOL I got lots of that too, along with remarks that insinuated it was all really about an insurance paid boob job. As if! Of course, once I came away from the surgery with positive lymph nodes and the chemo started, thankfully that nonsense of a response stopped. I'm sure they were just trying to make me feel better at the time, but you know. :-)

Julia123

JenC, if you are hating the steroids irritability and rage too, and haven't had too bad of an issue with nausea otherwise, I'd encourage you to ask your onc if you can at least do without the steroid during your last two A/C. I was able to do that during my last 3 A/C treatments, but it is the Taxol phase I'm told it is required due to high risk of reactions/stroke without it.

 I also agree with you on the Neulasta pain being well, a big pain. :-) It's almost as if, as soon as I start to pull out of the chemo fatigue and sickness, the bone pain starts! For me, I was already taking Naproxen (prescription strength Aleve - have been taking it for other issues for awhile), and when I called the first time they said add Tylenol to it. Phfffft. I suspected that would do squat, and it did exactly squat. I called back the next day and said there must be something stronger they could give me and got oxycodone. It doesn't take the pain away completely, but it definitely helps during those days.

Hope you feel better soon!

Emme

Julie,

I had weekly Taxol in January X 5 weeks.  I didn't have problems with neuropathy  I was achy, and tired from it.  Nausea was minimal.  My fingernails did turn slightly darker, as if I wore too much red polish and it stained my nails.  I wish you well with your continuing treatment.

Julia~

I ran into a situation this week.  I was in the hair salon getting my head shaved cause it was falling like rain...Another customer proceeded to tell me of every person in her life that had cancer..and died...I couldn't believe it.  I just wanted out!  It was all I could do not to tell that woman exactly how she was making me feel.  I know in my heart she didn't mean to make me feel badly, she just didn't know what to say to me and let her mouth run without thinking of what she was really saying. 

Good luck to everyone who is having treatment this week.

Emily

tpcjkk

Thanks, Emily, for the info on Taxol.  I am going to get Taxol every two weeks...what is the difference from weekly Taxol?  Curious to know what was your "recovery" period like after each Taxol round?  My oncologist is having me do three Neuopogen shots after the 1st round of Taxol, then two shots after round 2, then stop Neupogen (barring any problems with blood counts.)

After being told by many that round 4 of my AC was probably going to be the worst, I am actually thinking it might be the best.  I ran out of Emend, so have been using just Zofran and the occasional Ativan.  Not as much fatigue either...very strange.  I've given up trying to predict how I'm going to feel each day based on past experience.  Some part of me wonders whether the drugs are actually doing their job since the side effects have lessened so much this cycle...

Good luck to those getting treatments this week, and to all those continuing to recover from their last rounds.

~Julie 

lexie5

Well I'm getting ready for my 3rd AC this Thursday.  I have had nausea every single day since the last AC.  I've tried every drug but still won't go away.  Has anyone had low red blood count?  I have both low white & red.  Dr said I'll have to have a blood transfusion if it goes any lower.  Has anyone else had this happen?

JenC

Good luck to all those having treatment this week.  I am 5 days out from my last AC and am so tired it is pathetic.  I woke up at 1 this morning and have not been able to go back to sleep.  Guess I mine as well stay up and take an ativan at 8 and pass out.  I think it is the comming down from the steroids that is doing this to me today.  Did not have this problem last round, but like you said Julie, cant predict each round.  Neausia was better this time but the bone pain was much worse so who knows.  25% done (2rounds down 6 to go). 

susiesue

I am having my 4th and last AC treament on Thursday....wahoo!!!.....then I will start weekly Taxol.  I figure no matter how bad this cycle is, I'll be able to think.....okay I don't have to do this anymore.....

fyi, of my past 3 cycles.....ranking from bad to good....1st was worst, then 3rd, then 2nd was best....each cycle had it's own ups and downs

 take care all

marcy4

susiesue

I want you to keep me posted on how the weekly Taxol goes. I have 2 more ACs (June 7 and June 28) and then about mid-July start the Taxol.  I was told 3 weeks on and one off for a total of 12.  Good luck with treatment #4.  I feel so envious when I hear of people that are ahead of me.  I am really looking forward to Chemo merely being a memory.

Lexie5

Did you get Neulasta or Nueprugen?  My sister's sister in law had chemo for bowel cancer and had to have blood transfusions too when her counts got very low.  She was quite sick with her chemo and got almost every SE there was!  In fact, she was unable to finish the number of cycles they had anticipated.

Emme

Lexie~

I hae had a lot of nausea too.  For the past two rounds, my onc had me come in for fluids. I had my treatments on fridays, and I came in on a Monday the first time and tuesday the second.  Plain old saline, and after I had them I felt so much better.  The nausea subsided.  It was just like magic.  Are you sure you don't need fluids?  Last time i had a liter and a half.  I was there most of the afternoon but it was worth it.  I drink lots of fluids too, but the DD AC is just too much for me without the extra fluids.

Good luck!

I'm going for an expander fill on thursday and my 3rd of 4 treatments friday!  I am so excited that I am on the downhill slide...

Emme

Emme

• Julie~
• I was also taking lapatanib which is an oral chemo.  Weekly infusions really give you minimal good days.  I was taking 5 neupogen shots per week.  I had my infusion on Thursday.  Friday I was still like a poodle on caffiene from the steroids, so all was good.  Saturday, I felt good, but my energy levels dropped by night, so  I would be careful to reserve energy and not do too much that day.  Sunday and Monday were my worst days..because of the muscle aches from the taxol, and bone pain from the neupogen.  Tuesday, I was okay, tired.  Wednesday was my best day..and I was back at it on Thursday. 
• I am getting tx now every two weeks, (AC), and it is so much better than weekly....I have so many more good days
• I hope this was helpful!
• Emme 

JenC

I feel so much better today than on Monday.  Lack of sleep really gets to you.  I think the side effects of the steroids are over so I am looking forward to a good week.  Next AC is next Wednesday.  i am soooo looking forward to a good holiday weekend.  Hope the rest of you have a good long weekend with little to no SE's.  Pretty sad how we all count down the days til we feel "good" but at least we are all survivors..:)  Even though I have to go through this I would not give it up for the world as long as I get to be here to see my little one grow up.  Have a great day everyone.

saralmom

Finished my last AC on Monday!!  So excited!

All doctors and nurses tell me the weekly Taxol is a breeze compared to AC, so I've been counting on that - and now I'm nervous to hear that some of you have had a hard time with it.  I am prepared for continued fatigue, but that nausea is not an issue - no nausea meds needed they say.  I was also told I wouldn't have Neulasta during this part.  Hope not to.

Also will be in a clinical trial for a supplement (can't even remember what it's called) to reduce neuropathy symptoms - wont know if I'm in the placebo group though.

Hope everyone is doing well today. 

caltex_catlady

saralmom: We're still on the same schedule. I had my last AC on Monday (yeah! no more red devil!) and will start with Taxol in two weeks (I'm on the every-other-week T treatment). I've also heard that Taxol is easier, but, at least for now, I have to continue to do the Neupogen in the middle of each round. I'm not looking forward to the pain, but I'm set up with Vicodin and some good heat packs (Cryopak Simply Cozy, available from Amazon--the heat lasts a long time, and I can put one at my lower back and one on my shoulders or sternum) that seem to keep it to a dull roar. I won't have to take nausea meds, but I'll have to take 5 tablets of Decadron 12 hours before treatment then another 5 tablets 6 hours before treatment to help counter allergic reactions. I don't know how that much steroid will affect me.

And we might be on the same clinical trial. I haven't heard the official word if I'm accepted yet, but I should hear this week. They added some extra blood tests to the ones I had on Sunday to make sure I qualify. My trial is for acetyl l-carnitine. I figure that, even if I get the placebo, that gives them useful information for future patients, but I'm hoping for minimal neuropathy either way.

Karen

tpcjkk

Emme, thanks for the info on Taxol.  It sounds like it just depends on each person's individual reaction.  In theory, trading nausea (AC) for joint pain (Taxol) sounds like a better trade-off for me, but we shall see.  I covet the "good days" so hopefully the every-two-week schedule will be OK.  In comparing notes with another Taxol patient I was told weekly infusions take less time (like 45 min-1 hour), whereas the every two weeks infusions takes 3-4 hours, and that weekly infusions seem to minimize the allergic SE's.  I haven't really discussed with my onc, though, and at this point, I guess I would prefer to just have 4 treatments, as opposed to 12.  I just want to get this over with!

I am scared about neuropathy; I do a lot of computer work with my job and don't want to have problems with that when I return to work...glad to hear that Karen and saralmom are doing clinical trials...sounds promising.

~Julie    

marcy4

 Caltex-Catlady and Saralmom  -Congratulations on finishing your AC treatments. Good luck with the Taxol.  I still have 2 more ACs to go, and although, I have not had a problem with them, it will be nice to reach the halfway mark.  I am already dreading the weekly Taxol and hope there will be some good days in there.

Itpcjkk -  am concerned about neuropathy as well.   It seems to be the most scary SE to me.

JenC

Hey everyone, I guess I am not up some stuff.  What exactly is neuropathy?  Is that the tingling and loss of sensation in the hands and feet?  My Onc has not discussed much of the Taxol SE's with me yet so I am kind of in the dark.  I hear that it is much more tolerated than the AC but not sure what to really expect.  As you marcy4 I have to more AC's to go before I start the Taxol.

SGJ05

Saralmom and Catlex_catlady-HUGE CONGRATS on finishing A/C!!!! I hope your Taxol treatments are uneventful:)

 JenC--I have some mild neuropathy in my hands and arms from Taxotere. For me, it is a cool and warm sensation running down my arms as well as some tingling. I believe for most people it can cause numbness, tingling and pain in your extremities. I am praying mine does not get worse.

saralmom

Karen - that is the supplement in the trial I am in.  I feel the same - even if I'm in the placebo group, perhaps the results of the study will help future patients after me.  

I have had some weird feelings in my pointer fingers even on the AC.  Kind of tingly and kind of itchy.  And my hands are DARK.  Like super tan even though I haven't been in any sun at all.  My onc said it's from the AC and might not go away.  It's noticable and a few people have asked me about it.  I hate it.  And just today, I noticed the the moon part of both thumbnails are turning kind of brownish purple.  I am totally freaked that it's the start of black nails or nails that fall off.  I get myself crazy with these SE.  Anyone else having hand issues on AC?  I thought the nail thing was on Taxol!

Dumb thing I did today - forgot to take my Emend in the am and then felt like crap all day.  And the air cond. in my office wasn't working so when I went in to see a client I was pretty nauseous the whole time.  It was 88 and humid here today!  Looking forward to laying on the couch literally all day tomorrow. 

Sara 

JenC

Saralmom -

Sorry to hear about the nail and hand thing.  That would freak me out to.  Hopefully it goes away.  Keeping fingers crossed for you.

SGJ05 - thanks for the info.  Was not really sure what the neuopathy consisted of.  Hopefully it wont be to bad where I work on a computer in an office all day... 

Have a great day everyone.  Hope you feel better sara--

marcy4

I have had one FEC (April 19), and one AC Treatment (May 17) and my hair is growing back already. I have to pluck my eyebrows and shave my legs and my head is beginning to slowly fill back in. I was not expecting this to happen so soon and it may change again as treatments continue,but I am pleasantly surprised.

dutchgirl6

Saralmom, my hands are darker as well, I am on FEC, not AC.  The onc called it hyperpigmentation, and it could happen anywhere on the body, but usually the extremeties.  She didn't say anything about the possibility of it being permanent, though.  I hope not.  It looks like I chopped my hands off and sent them to the beach for a couple of weeks, they certainly don't match the rest of my post-winter skin colour.  No discolouration on my nails, yet.  I was told that it was one of the possible side effects of the docetaxel, which I will be receiving for the last three cycles.  One more FEC left.

Marcy, that is exciting about the hairgrowth, hopefully it keeps up, but in the meantime, enjoy it. I'm glad that the new regimen seems to be agreeing with you.

I am slowly feeling normal again, now that it is day 11.  I pretty much spent the weekend in bed, but that's ok, the weather wasn't the greatest anyway.  One setback though, I have developed a blood clot in my arm due the the PICC line.  So, now I am on a blood thinner for the duration of the chemo, and for a while after that.  This is a whole new world for me, in my previous life, I didn't even like to take tylenol.  

Have a good day all.

Pickles

Hi All!

It's been a while but I'm actually having my treatment at the moment and have a few minutes to type!  I've met some great Chemo buds during treatment...we"re now known as the party room!

I'm on #3 of six so I'm at my half way point for the triple doses followed by a year of Herceptin.

Hurray for all of you finishing your treatments.   So happy everytime I hear of another survivor moving onto the next step in recovery!

 here's to no SE's!

susiesue

today I had my last cycle (fourth) of AC, in two weeks I'll start my Taxol......I've heard a lot of the same things others have.....weekly dose is less so the SE's are easier, Taxol much easier than AC, less nausea (my dr. said that i would not need Emend for Taxol).  I am wondering how my blood counts will be since I will no longer be receiving Neulasta.  I am a little nervous starting Taxol (similiar to when I started chemo), not sure how the first treatment will go.  Also, twelve treatments sounds daunting to me, so I'll work on taking it one treatment at a time.

Like others, what little hair I kept is growing....

take care all......