Chemo Dose Reduced

epgnyc

My first AC treatment for TN was pretty much a disaster.  When my oncologist came into the room yesterday he said, "Well that didn't go well!"  Despite all the drugs administered, I had bad nausea and could barely eat for 2 weeks.  I also had mouth sores, thrush, fatigue, a headache that was like a migrane and on Day 7 developed a fever and was admitted to the hospital with a ZERO white blood count.  I was there for 3 days getting pumped full of antibiotics round the clock.  I was shocked and upset yesterday when my oncologist (I'm being treated at Memorial Sloan-Kettering in New York) told me they would have to reduce the amount of chemo by 20% -- he said they couldn't risk another bout of severe neutropenia (meanwhile this was after having the Neulasta injection).  I feel like 20% of my hope just flew out the window.  Being triiple negative and all it has always been stressed how important chemotherapy is for us in particular, especially since there are no other drugs for us to take to lower recurrence.  I'm feeling totally bummed and need some encouragement going forward as tomorrow I'm having my 2nd (and lower) chemo treatment.

jax65

Just wanted to let you know that the same thing happened to me after my first chemo. I did TC no A but ended up in the hospital on Easter Sunday with fever and zero white blood count. Did 3 days of round the clock antibiotics too. Onc reduced chemo by 20% and I was worried but he told me they do it all the time. After last treatment I even asked him should we do a couple extra since they had reduced dosage and he told me not necessary. I am now over 2 years out but still kind of worry every day don't know if that will ever go away.  All I can tell you is in the beginning I thought it would never end but it does. Best wishes to you.

Jackie

yellowdoglady

Those people know what they are doing, so just keep asking questions.  I couldn't take the A part as family heart history didn't allow that, but I was told that it wasn't going to diminish my chances in any appreciable way.  I'm clean two and a half years out and feeling good.  I was told that the idea is to take you to a cliff and hold you over the precipice and keep you from falling while the bad cells go over the edge.  In other words, if you feel sick, the bad stuff is dying.  The trick is to keep you from dying with it, and the pros are all over seeing that you live while it dies.

My fingers are crossed and my thoughts are with you. 

chicknz

I do know how you feel. I'm in New Zealand so my chemo was slightly different. I had x3 FEC and then X3 Taxotere. With the FEC, my wbc hovered low and I was delayed a couple of days everytime. Funny how they just get you up in order to hit you again. Anyway it was the Taxotere that got me. Not zero like yours but a 0.01 neutrophil count! As the Onc said how lucky that wee neutrophil was-to be zooming around all on it's lonesome only to be sucked up and counted. I felt dreadful with all the nasty side effects (in fact more than the usual taxotere dreadful) and clearly looked like the walking dead. I actually asked " So your objective is to have a live patient at the end of this is it?" Poor man was horrified. Anyway when he muttered something about stopping the Taxotere and going back to FEC I went home and started thinking. 'What if it comes back and we changed the game plan? How will I face myself in the mirror?' To cut a long story I emailed his Rotweiller of a Nurse the next day and it was agreed not to change the plan, still have Tax but reduce the dose. It turned out that he was giving me way more than the recommended dose per body weight (as being TN he wanted to blast the nasty) and as jax65 said they do it all the time. I too am nearly two years out and so far so good. I'll be honest though there have been a couple of scares along the way (scar tissue lumps and the odd node in the neck) but I try to keep looking forward, enjoy my boys and often behave badly! Guess you're in chemo mode again. I hope it doesn't hit you so hard this time. Take it easy.

yellowdoglady

Anyone here who liked chemo, just raise your hand.  I don't expect many have.  But as bad as it is, it may have saved so many of us.  I was miserable, but as I am well now, I am a fan of being miserable for a while and then living happily ever after.

If it is too harsh, talk to the doctor.  Getting you well is their job. 

yellowdoglady

Okay, I have said this before and I don't know if it was on this board a long while back or somewhere else.  That is not important.

About Chemotherapy.  I was told that the idea is to take you to the edge of the cliff and hold you there as you are about to fall, while all the cancer cells go over the edge and you can be pulled back again.  It's nobody's first choice, but those people in that field who are experts can get you to a place where you won't die but the bad things that might still live in you certainly will.  Get a second opinion if you need to.  But just feeling like shit is no reason to stop killing the bad guys if the blood issues are handled.  If feeling like crap was a reason to quit, there would be no one on these boards.   

LRM216

Just to give you a bit of support.  I too ended up in the hospital immediately after my first A/C.  I was there for five freaking days being pumped full of antibiotics and my surgical breast also developed cellulitis so an additional 6 weeks of antibiotics infused each morning - seven days a week.  They delayed my second A/C - which they also reduced all remaining A/C's by 20% - a week.  I was a wreck.  I had the worst of every side effect known to man during all of my chemo.  My first Taxol (4DD every two weeks) - I got instant neuropathy so bad in feet and fingers, she had to switch me to taxotere (easier on neuropathy).  I was such a total wreck throughout all of my chemo just waiting for the next catastrophe to happen.  If anyone ever wanted to quit - It was me.  Between my family and my onc - I plodded on and it is all now behind me.  I dread the thought of EVER having to undergo chemo again, and honestly, don't know what I would decide if needed, but hang in there - persevere - stay as strong as you can, and see it all through.  Reduced dosages are very common and my onc assured me that it is done very often.  I wish you all the best.  This really sucks - big time.

Linda

yellowdoglady

Good job Linda.  Staying alive is Job One. 

janetcheryl

Today I had my 3rd TC shemo session, and my onc lowered the dosage by 20%. My 4th (and final) will also be lowered. My blood count is fine (and without any Neurlasta), but from the start my side effects have been awful. My onc says TC always has a cummulative effect, and even if I were to survive the 3rd dose, I would not be able to go through with the 4th.  I developed severe intestinal mucositis days into the first cycle, which can be deadly. I also developed neuropathy with the first session. After the second session, I could hardly get out of bed--total exhaustion from the Taxotere. Additionally, the Taxotere is doing a number of my veins.  I did not elect to have a port--wish I had. I have an oncotype score of 19 and my tumor was in the lower inner quardrant (poorer prognois), but I now wish I had gone directly into hormone therapy and skipped the chemo.

yellowdoglady

janetcheryl,

You are not triple negative, so why are you here?  There is better stuff to serve you on other boards.  Or do you just want to hang where you can feel sorry for yourself?  

yellowdoglady

We usually just do our chemo without complaining loudly.  If you want to go directly into hormone therapy, go for it.  And do it somewhere else.  You have no business whining here.   

Luah

yellowdoglady: It's quite possible that janetcheryl arrived at this thread from an "active post" link and didn't realize it was for triple negatives. What's more, she may not even realize that we TNs don't have the benefit of hormone therapy options... and have no choice but to suffer through chemo. I think a lot of women share their complaints about chemo on these boards.. is that whining? They may be seeking support or just needing to vent.

janetcheryl:  You may want to go over to the Chemo threads.. you can connect with women doing your regime at the same time as you.  

TifJ

WOW- Yellow. That was a bit harsh. I have accidentally posted on a thread where I didn't belong before, but I was, very nicely, told that I would find more information or others with my same diagnosis/treatment on another thread. I thought we were here to help others.

bak94

Janetcheryl. So sorry you had a hard time with tc. I think you will be glad you did the chemo for extra reassurance, even though it is tough. Don't worry about talking about your bad experiences, we are here to support you, no matter your er/pr status.

yellowdoglady

I need to apologize to all.  

My bad.  I had a bad, bad, very bad terribly bad week.  I never had to apologize before because I never took it out on others before.  My boss had a stroke and is in the hospital and may or may not get back to work or to life.  After so long, the man is family.

I thought we had it all together that we knew what would or could happen and when to expect the worst.  But we have no idea what to do with others who get into trouble for no apparent reason.  At least I don't.

I totally fell apart.  There was no warning.  I was almost as angry as when I was told a few years back I should not survive.  This fellow I speak of is older, yes, but healthy and fit.  Walks to work, back home for lunch.  Back for the afternoon.  And he is healthy, but had a stroke anyway, and may or may not survive.

Again, I am sorry. 

mrsnjband

In regards to reducing chemo, I am wondering if you were given dense dose levels.  My dd was triple the amount every 2 weeks.  My side effects weren't quite as bad as what you ladies have gone through & my heart goes out to you.

I was switched from Taxol to Taxotere (single dose on both).  For me, Taxotere was the worst. Neuropathy was bad.  I had to skip a week & then he gave me 1 1/2 dose so I could finish for my surgery.  I sure understand how you ladies feel about not wanting to go through chemo again.

Hang is there & take it one day at a time.  

Sending you love & support. NJ 

TifJ

Yellow- So sorry you are having a difficult time right now. Anger can creep up on us very quickly and without warning and we may say or do things we otherwise wouldn't. I hope things get better for your Boss.

Tiffany

bak94

yellowdog, so sorry you are going through another devastating event. When you think you can take no more, more is thrown at you and that sucks. Hope he gets better.

Titan

Hey yellowdoglady!  We thought you were having a bad day..we all do..

It sucks having cancer and it sucks even more when our loved ones experience the same type of crap.

ok..on to this topic...

I don't have much to add except that maybe getting through as much chemo as you can take is a good thing...

Chemo doesn't do any good if it kills you before the cancer does..right?

janetcheryl

Dear bjk66 and TifJ,

I am rather new to this website, didn't know what I was doing, and accidently posted on the TRIPLE NEGATIVE forum. Thank you both for your understanding and support. It means a great deal to me. 

I am very thankful that I am estrogene postitive and wish you were. Unfortunately, last Wednesday I let my horrible side effects get the best of me and complained on the wrong forum.  Ninety-five percent of the time, I'm  positive and thanking God for the blessings that have resulted from my cancer. My 24-year-old daughter died a few years ago, and I began dwelling on the past--things I couldn't change. Since my cancer diagnosis, my focus has been only on the present--it's great! I have finally accepted that Annie will never come back to me, and I now enjoy the blessings of each day, especially the love of my living children and spouse.

I don't know how I would feel if I were triple negative; but probably I'd feel far less positive. I say this because, I used to worry that my tumor was in a bad location--lower, inner quadrant.  It took me a couple of weeks to accept the worse prognosis that comes along with that location. And it took me a few days to come to terms with the fact that my chemo dosage was lowered against my wishes.  but tThe lower dose definitely has its benefits--I'm no longer experiencing severe intestinal cramping, and I'm no longer having stabbing electrical pains in my legs and arms. I guess my oncologist knew best. Now that I'm feeling better, I hope to return to work! 

Trust me, I've learned my lesson all too well.I won't risk making another mistake on this forum, so this is my last post. I'm afraid with chemo brain, I'll keep making mistakes.  

I wish you two, yellowdoglady, and all others triple negative the very best in your battles against cancer. I've been praying for all of you.

Sincerely,

Janet

TifJ

Janet- I'm very sorry you lost your daughter. I am a Mom of 2 and can only imagine the pain of losing one. I'm also sorry the above was your last post- there is great information on these threads, but it does take time to find the one or ones that suit you. I actually had a relatively easy time with chemo, yet I am scared everyday of the beast returning. I would feel this way whether I was ER+ or triple negative. Please pray for all of us regardless of our stats. Take Care.

mrsnjband

Janet,

I wouldn't sweat the fact you posted on the wrong forum.  I think we should all be here to help each other.  I mostly stay in the "Active Topics" at the top & don't always pay attention to what "forum" they are in.  

I am so glad you handled your last treatment better.  

I am sorry to hear about loosing a daughter, I can't imagine how hard that must have been.  If there is a silver lining in all this is that it does help to live in the "now".  

Sending you losts of love & support. NJ 

yellowdoglady

Thanks all, and Janet if your issues are negative all around you may have come to the right place after all.

I'm sure most of you know that we hold so much together that once in a long while the dam breaks.  It isn't always easy.  Some want to butt in and see what you have in case you die.  They are the vultures, and should be avoided.  Some run for the tall timber because they have asked so much of you and won't even think to return the favor when the shoe is on the other foot.  The third sort are my favorite.  They act just as they always have, and just remain friends.  I love them the best.