March 2010 Chemo Start

5 days out from my last TC and I can certainly tell the difference with not having the neulasta shot. No fever or bone aches!  I have had mild muscle aches and extreme fatigue.  I slept 12 hours on Sat.  Slowly feeling better but still so tired.

Frosty! 5 1/2 miles? You are doing awesome!  Before all this I used to run about 20-25 miles a week and now I can't even walk a mile!  Just get too tired and then the tummy starts acting up. I am so ready mentally to get out there again ... I just can't get this body to cooperate. 

Lisa - hope your SEs with the taxotere are minimal. I have not had much problem with the neuropathy ... a little after treatment #3 but now only a little weakness in the hands. (Opening jars and such)

Lorraine - Good luck with your treatment today and to anyone else sitting in the chair today!

Hugs, Charley

I'm 5 days out from tx #4..ugh the bone pain set in yesterday and will be around for 2 more. Thank God for good pain meds.

Charley- I'm so jealous you are sleeping 12 hours...lol. I might get 2 hours at night only to be woken up by hot flashes, then fall back asleep for another 2. I'm home alone all day, so not much time for rest with dogs going in and out, phone ringing, visitors...etc.

I'm just wondering how long it takes to get rid of this bloated, chipmunk chemo face I have going on right now. I look like I am harvesting nuts for the winter. Not to mention all the other parts of my body that are bloated....I was a size 4 last Wednesday and today I look like I am 7 months pregnant. I so badly want my life back...to feel good in my skin,....... and my clothes.

As you can tell the cranky train is taken a long respite in front of my house. Just a bunch of complaining. I am just so tired of being tired, bloated, cravings, sleeplessness, hot flashes, short temper, dr appts, needles....ugh. The list goes on and I know I have company

Anyway....all aboard the cranky train, there's plenty of seats. I'm bringing a bottle of something adult

Hugs to you all,

Ana 

I have finally feeling like me again and now it is time to go back for taxol #1.  I have 12 weekly treatments so no end in sight   Just wondering how everyone else was doing with taxol...I was told that it is supposed to be "easier" than AC but I have my doubts.  Any insight would be great.  Thanks ladies!!  xoxo Angi

momaof3bugs:  I think you'll do just fine on the weekly taxol. I did 12 of them  before and had almost no s/e except for my fingertips and toes getting a littlel numb but that went away after treatment ended. Also, I did get diarrhea the 1st couplel days but immodium cured that right up and that only happened the 1st couple of treatments.

To everyone else who is done with their treatments I wanted to say a big CONGRATULATIONS!!!!!! I'm hopefully at the halfway mark. Everyone take care, and for those who are done, do something GREAT for yourself to celebrate!!!!!!

Suzanne E.

Good Morning Ladies!

Looks like Carolyn has entered the world of anemia with her current treatment. Have any of you been given  erythropoiesis-stimulating agents or ESA's. From what I am reading this may not be a good thing. 

You all might like this.... a dumb husband moment. 

I am totally addicted to cruises and wanted to set up one for December 3, 2010. I could not figure out why the wife was not into the trip. Then it dawned on me, no hair and a port. I canceled the trip this morning. Maybe we might go after Herceptin is done in March and hopefully she has some hair growth. 

Lorraine, I'm glad you're still feeling well so far.  Hope the Neulasta doesn't bring you down too much.

I agree with those who have said the third was the worst.  I thought the later treatments were more tolerable, though the effects lingered a little longer each time.  It was like the pool got wider and shallower...so to speak.

Lesinindy-  There are plenty of women out there wishing for as dumb a husband as you!  What a sweetie to be planning a cruise, even if the timing could be better, the thought is there. You seem like a kind, caring partner.

Just a thought.

2nd taxol for me Thursday, hope everyone has a good week.

Jen

A question for all in the middle of this, as I am:  How closely are you monitored by your doctors?  Mine doesn't seem to care if I'm around or not.  I saw her May 5, after finishing 4 rounds of AC.  She gave me a pep talk about how great everything was going, said she'd see me in a MONTH (?).  A few days after that, met with my surgeon, who says things aren't so great.  Not so great, in fact, that she will not be able to do the lumpectomy I had planned, and advised me to look for good plastic surgeons.  Gave me a list of 3 they work with, of course none work on my insurance plan.  I am supposed to have my 2nd of 4 rounds of taxol thursday.  Didn't go in to do labs on Mon., or yesterday. I don't think anyone notices or cares if I ever show up there again.   Am seriously considering just not going Thursday, and finding a new doctor who cares.  Oh, and wasn't offered counseling of any sort, even though i was sitting there crying my eyes out, with the surgeon trying to convince me that all this chemo has been good, because she "thinks" the tumor "may be a little softer." Which will make her job easier... or something. 

On top of all, I have been having painful SEs. Anyone get the feeling people are poking different parts of your body hard with an electric screwdriver? Last time I managed a call in to the nurses, they pushed me to take Tylenol 6x a day, I said that just wasn't cutting it, they finally gave me an Rx for pain, but grudgingly.  Also am going thru menopause (I think?) and it's making me nuts.  Shouldn't this doctor care? Just a little?  She's already given me the lecture that she's there to cure my cancer (she thinks VERY highly of herself) and NOT to "hold my hand."  I am about to stop this train completely, I think, until I can get my head together, and find a doctor I actually trust with my life.  Does anyone else feel like they're managing this on their own?  I feel like my insurance plan is not lucrative enough to make them care, and have expressed this to my doctor, but shouldn't I see her more than once or twice thru these months of torture? 

Any thoughts are welcomed, as I am feeling like the "crazy" one.  And don't really think I should...

Thanks all, Jen

1vamom - From a technical standpoint I can't give much advice on how your doc is doing but the comment about being there to cure you, not hold your hand did it for me, I would get a new doctor.  Getting through all of this crap is almost as much an emotional battle as a physical battle and if you can't rely on your doc to hold your hand at least a little I don't think that is a good thing.  I started crying in the chemo chair on Monday, and while it was the nurses not the doc who held my hand, they did a pretty darn good job of doing just that.  Sometimes we need our hands held by whoever is the closest and in the best position to do so.

MNLinda - loved the comment the pool got wider and shallower and I have quoted that to my friends and DH as how I hope I feel.  I think the mere fact that I am posting this morning on day 3 post chemo says a lot.  Last time I couldn't move from the couch. 

Everybody else who had treatment this week - I hope your SEs are mild and go away VERY soon.

Thanks for the kind words and advice, all.

I was going to wait it out today to see if anyone notices or cares that I have not been in to do labs.  I usually only go in on mon if my chemo is that thursday.  I have had trouble getting test results back, and I suspect that nobody keeps track of my bloodwork, unless I ask a few times.

The last time I had chemo, the nurse printed up my lab results, and took a quick glance and just said everything looked "ok" to go on with chemo.

Is it too much for me to expect them to notice my "absence?"  I always get a very hurried exam, with the apologies that they are "very busy."  Last time I saw my onc (may 5) I sat in her waiting room for 1 hour and 20 minutes, even after checking with them several times, and they were saying "it'll just be a few more minutes."  Finally, when I said I'd had enough, and would just have to reschedule, someone told me i had already been seen.  When I said that no, I hadn't, the lady at the desk showed me her list where my name had been crossed off as "proof."  Then was told by the onc AGAIN how busy she is.  Wasn't given a gown, just told to strip in front of her for a "quick look."  Like I was the one an HOUR AND A HALF late for my appointment. 

Anyway, I sort of feel like a pouty child waiting to see if they even notice my absence, but I feel like if they overlook my appointments for labs, etc., then how important at all am I to these people?  Except for what I'm sure is a whopping check from my ins. co.

Thanks, lesinindy, I know it, but have not been able to do anything about it yet.  I'm down about a lot of things right now, and may be expecting too much from these people in the way of "care."  But, I would still think someone would notice the absence of labwork and call to see if I'm alive.

It makes me think they really haven't been monitoring much to start with.

I do have a name to call at the hospital, a Patient Coordinator, but I guess just have been feeling like $#@! lately, and am feeling sort of helpless, and really just feel like giving it all up.

Not to bitch too much, but i'm a little cranky these days.  Jen

Hi all -

Had my last AC infusion yesterday and woke up feeling fine this morning.  I'm still undecided about the Taxol.  Oncologist listed the pros and cons and pretty much told me I've got a tough decision to make.  I've set up an appointment in three weeks, just in case, so I've got some more time to decide.  I'm fairly sure I'm going to go for it.  I just wish I could get some better info about the long-term risks of Taxol...  Anybody out there got some info to share?  I've heard about the neuropathy (which was the only potential long-term risk my oncologist mentioned), but is there anything else to worry about?  Does it potentially damage the heart like other chemo meds?  Also, what kind of cycle have you experienced with the low-dose, weekly treatments?  I was on AC once every three weeks and the side effect cycle was pretty as predicted (nauseous, no appetite for week one; emotional, tired, crappy immune system for week two; almost back to "normal" for week three).  How do the weekly treatments go?

Thanks for any info/insight you can provide.

Lisa

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"I am assured, yes, I am assured, yes, I am assured that peace will come to me..."

                                                                            ~ Josh Ritter, "Lark"

Jen, if I could add something - please keep your labs up to date, and do your best not to contribute to the deterioration of the dr./patient relationship.  It only hurts you if it goes downhill.

Try to approach it as a need to make a positive change (I'm finding a medical provider who better meets my expectations) rather than a negative one (I need to get away from this awful doctor).  Sorry if that sounds preachy or new-agey, but you should keep in mind that your new doctor will get a copy of your records, and might be made wary by things like "didn't show up for labs" in the history.  If you can set your frustrations aside and soldier on, even without getting good support from your medical team, you will benefit in the long run.

Lorraine, it really does go better if you can force yourself up off the couch.  I think lying down and hoping to rest your way out of the bad part may actually keep the drugs in your system longer and make you feel worse.  Move as much as you can tolerate!

well #4 ended up being given.  i feel like celebrating.  how weird is that??  my numbers were still low but high enough to get treatment.  and also they managed to get blood draw with my port so whatever plugged it up the last time seems to have resolved itself.  tomorrow i go get my shot for my WBC and by friday i should be feeling like a mack truck ran over me.  then again maybe this time it won't be as bad as last time.  i'm just grateful it only lasts a few days.

~M

For those nervous about weekly Taxol:

I had weekly taxol back on "08" for 12 weeks. I had just finished 4 rounds of A/C prior to that. The Taxol was a cakewalk compared to the A/C like my Onc. promised it would be. It's a low dose when it's given weekly. I had no fatigue, no nausea, no days where I felt like I hit the wall, I only had a small amount of numbness in my fingertips and toes that went away within a month after ending it. I started off doing Taxol/Herceptin weekly then my herceptin was switched to every 3 wks. after the taxol ended. And the Herceptin alone was just a plain old social visit to see my favorite nurses. I was able to go back to work after I started Taxol. I did have with my first 2 Taxol treatments some diarhea so I took 2 immodium after that the morning of treatment. It honestly was NOT hard to do at all, and trust me, I'm the kind of patient that if there's gonna be nasty side affects, I will have them. lol  So please, for those of you afraid of the Taxol, don't be. I know any new drug is scary because you don't know how your body is going to react. But if you've already done A/C and survivied that?? You will do just fine. 

1vamom:  Please consider switching oncologist. You do NOT deserve to be treated in such a cold manner. Makes me angry just to think about it. Too busy??? Are you freaking kidding me? I've been a nurse for 15 years and there is NO excuse for treating any patient like that. I'm SOOO sorry you're having such a rough time. It's hard enough to deal with all this let alone have to deal with a cold uncaring Dr. and staff.But please do NOT let your labs go undone. This is VERY important. Just get on the phone and schedule an appt. with someone new. Have your records transferred and be DONE with Dr. cold and uncaring. I wish you the VERY best and please keep us updated. 

Hang in there everyone!!!!!

Suzanne E.