April/May 2012 Chemo hang out

vickilind61

melrose, I will be going in Sunday for my Neulasta shot.  My MO has it as part ofher tx plan.  If it is bd, i will talk to her about trying it without.  I have always been pretty healthy: minor cold twice a year; had the flu once in the last 15 years; my big issue has been migraines.  So, if the SEs are bad, I will tryto stop the Neulasta.  We will see. 

thanks kjilberty; we look pretty darn good, don't we?!

kjiberty

Rgina:  I take  dexamethasone twice a day beginning the day before infusion until the day after (6 total) and no other steriods. I have had to take the Neulasta shot since the second infusion due to my WBC counts.  I also have to be on antibiotics for 10 days post- infusion.    I had labwork a week after my first infusion, but since then only get it the day of infusion.

Wishing you minimal S/E's this weekend. 

mary71145329

vicki--Love the pink mohawk! Good for you!

rgina--can't answer your labwork question for you but I will answer the steroid one. I take dexamethasone 2 times the day before and another 2 times the day after infusion. In addition, it is given IV the day of infusion.

sandik---hang in there. You can do this! Rest as much as you need to!

melrose---thank you. Basically, I'd be better off not knowing what my counts are between treatments?! lol

dancetrancer

Vicki - don't forget to ask you onc if you can take Claritin to help decrease the bone pain with the Neulasta!!!  

SandiK - so sorry this round is really kicking your butt, gosh I know what that feels like.  Hugs to you!!!!  

Mary71 - you may very well rebound in time for chemo, but if you start out lower for your next round, you likely will indeed need Neulasta or Neupogen on that round.   You could get Neupogen now to make the nadir period safer - I feel better doing that - but everyone is different in terms of their risk tolerance.  Neupogen is a smaller amount of medicine than Neulasta, you can get daily shots until the ANC is high enough to be safe.  You do have to get bloodwork twice a week to monitor it properly.  

kjiberty - hope you get lots of rest this weekend!!!  I agree with getting the sleeping med NOW.  Helps you heal so much better/deal with chemo so much better. 

rgina - maybe you just have a VERY robust WBC system?  I know my platelets rebounded above normal one time - doc said my system was just overreacting to being beaten down.  Wish my whites would do it naturally like yours!  My whites have been off the chart high at times, but it is always due to the Neupogen.  Well, one time it apparently was due to an infection.  I'm not sure I really have an answer to your question - but those are my ponderings!  

I always get steroids: prechemo 16 mg, day of chemo 20 mg, post chemo 16 mg.   

rgina

Kjiberty and Mary - do you have steriod crashes that last longer than say 24 hours, I'm thinking (that can be frightening) that my foggy brain feeling that came on by early morning day 2 and only lasted one day was maybe par for the course since I only get the dex at infusion and no other times.  Just thinking ahead to the few days and next week, what happened last time for me and what I've read that others have posted regarding time frames. Thanks for the info, ladies.

mary71145329

dancetrancer--thanks.  Personally, I would feel better not having to remain in "quarantine" and be so cautious of everything over the next 10 days. I'm sure you are right though about me needing to have the neulasta again for treatment 3.

rgina--I really can't say about a time period for my steroid crash--I get very tired about 48 hours after treatment and that usually leads right into my SE's with leg pains and general ick.

mary71145329

dancetrancer--thanks.  Personally, I would feel better not having to remain in "quarantine" and be so cautious of everything over the next 10 days. I'm sure you are right though about me needing to have the neulasta again for treatment 3.

rgina--I really can't say about a time period for my steroid crash--I get very tired about 48 hours after treatment and that usually leads right into my SE's with leg pains and general ick.

lisa2012

Dance trances, I never heard of Restoril. I've used Ambien on and off, and pretty frequently since BMX in late Feb. Now I'm lucky if it gives me 3-4 hours. Maybe it's lost its effectivess. If i take Ativan mid-evening it often can help..Ive heard of Elavil and Lunesta. I hate taking this stuff but I hate being exhausted. My Onc is not interested in insomnia, may ask my PCP.

Did two social things yesterday. Today i went to my school and led 5th grade promotion ceremony with my interim. Went well. I then came home at 1:30, could barely walk from the car, made it to the couch and slept for 3 hours. I guess my system is not used to doing much.

Aiming to next tues (labs and decadron) and weds(big girl chair.) can't wait to get that fourth and final one going. Melrose, so TC combined nadir is day 5-14?

Melrosemelrose

Mary71- My onco knows that I get out during nadir but it is up to me to decide where I go and the amount of contact I have with people.  Yes, I avoid crowds and eat at home during that time.  I also know that if I didn't get out every few days, I would go crazy.  I've told my onco that shopping is a way to get walking exercise in where it is air conditioned plus it is therapy for me.  When I got fever/chills after Treatment #2, I did make an effort to stay in for 5-6 days while I was on the antibotics just so I could my body time to recover since it was the week before my next treatment.  I, like you, was nervous that my WBC numbers wouldn't come up in time for the next treatment.  However, they did on their own without the help of a Neulasta shot.  The week before our treatment is when our WBC numbers recover and probably feel our best.  Hang in there!!!!  Just don't be surprised if your onco prescribes antibotics or a Neulasta shot after your next treatment.

Melrosemelrose

lisa2012- Can't really say for sure that our nadir period is day 5-14 but it makes sense to me.   Glad you are getting out; now it's time to rest up for next week!!!  I guess I'm one of the fortunate that is not taking anything to sleep at night.  The only time I don't sleep well is after I taken those Decadron.  But since I know it keeps me up, I just don't get upset about not sleeping and nap whenever I do get sleepy.

kjiberty

Rgina:  My chemo nurse said that the steriod crash usually begins about 40 hours post chemo and she's right, that's when it usually hits me. I get chemo on Thursdays and crash sometime Saturday around noon.  One more round......counting the days...

dancetrancer

Steroid crash starting for me tonight (day 2 post TCH):  C train, just took some Miralax.  Heart burn is starting in earnest.  Hot flashes repeatedly.  Tired and b*tchy and distracted.  Poor DH - I've apologized for snapping at him tonight one too many times.  "Turn the fan on.  No, off, I've got goosebumps!  Now on!  That d*mn tv is too loud, give me the remote!"  OY!!!!    And he is just so tolerant, saying he feels so bad for me, telling me how good I've handled chemo.  What a gem.  Love that guy to pieces!!! 

Fierro6

I feel so bad for my DH, too.  This is our first round of this crap, and I'm only day 4.  He came in and I was crying so he asked if I needed a pain pill.  I snapped, "I don't hurt right now!  There is a TON of food in this house and NOTHING sounds good and I'm ALREADY TIRED OF SOUP."  I could tell I hurt his feelings, but he just said, "I'm sorry.  You've been handling this so well.  Nobody would blame you if you just stayed in bed and you are going to work every day.  Please tell me if something DOES sound good, and I'll get it for you."

I thought only body builders got 'roid rage.  LOL  I took my last dose tonight, so we'll see.  I am starting to hurt, now, and will likely take a pain pill and valium, so maybe they will fight the sleeplessness.  Otherwise, I'll puke nothing but pills within a week of this journey.  I swear, my bag makes me look like I'm a junkie.

dancetrancer

LOL!!!!  Fierro, I've been saying all day that I now understand 'roid rage!!!!  So glad to hear your story - makes me feel better!    This sh*t makes you feel crazy.  My last pill was last night, so no steroids today...getting weirder and weirder.  Just. can't. focus.  Ugghhh!  Looking forward to knocking myself out with a sleeping pill.  Hope it works, and I'm not up half the night with diarrhea from the Miralax.  That would just be my luck.  LOL!!! 

lsharvey822

@Dance - last round! - hang in there!!!  don't know how I would be doing this without you!!

lsharvey822

@Fierro - he's a keeper!  and you're totally worth it!  and the grumpy part passes too but heads up if you're like me you'll have a short fuse for a while!! and I'm a red head!!  it'll be ok...we'll all make it thru.

vjm

Gemmie - I use 1 tsp baking soda in a small glass of warm water, swish and gargle rinse and spit until glass is ready. I buy the ultra soft tooth brush with the tongue cleaner on the back and when it's not so acute I use my soft electric toothbruch on my gums and tongue. Four times a day faithfully!!!

Dancetrancer - Wishing you a peaceful night free from s/e's. You booked up a storm - DH must love you high on Dex!!! I am so happy to be done with #4 - they held the cyclophosphamide tho cuz of my heart and anaphylactic reaction last time. Onc was pleased to have 3 in and more concerned to get the taxotere in with the herceptin - that's where they synergy is she says. So went relatively well today and will soon celebrate when I have my mojo back!!!

Going to curl up with it now and watch the Sherlock Holmes movie with my lovie. Nite nite all xoxo vjm

rn4babies

Mary, my WBC and ANC were identical to yours after Round 1 and the clinic called and told me I was neutropenic and had to come in that day for Neupogen. I had 2 injections of Neupogen and my labs weren't checked again for another week. They had come up nicely. I also was given a 10 course of antibiotics. Because this happened, I was given the Neulasta after Round 2.

IndigoMont11

Seems like pretty much all of us are on dexamethasone. On A/C I have had it on days 1-3. When I switch to Taxotere next month I'll start the steroid the day before tx (day 0) and stay on it twice a day until day 3. I am thinking if the steroid is prescribed longer with Taxotere because of the risk of allergic reaction.



I also think as far as emotions we are at the mercy of a perfect storm that consists of: finding out we had cancer, watching our bodies be changed permanently, riding the rollercoaster of steroids, and chemopause. Sometimes it helps me to know that. But then I have times like the last few days, when I don't want to do much of anything, least of all housework.



That is interesting that nadir is earlier for Taxotere than A/C. The MO wasn't that specific with me, although now it makes sense. I have been lucky so far; no fevers or chills, and no Neupogen/Neulasta. Still taking the Marrow Plus every day.



My DS#1 calls my after tx meds my "crack pack." I wonder if I'll have any fewer meds on Taxotere. We can only hope. I still am taking half an Ambien every night because I too have trouble sleeping through the night without it. I usually take a whole tablet right after tx while taking the steroid.



Vickilind, great picture!



Hugs and wishes for a restful evening to all my sisters out there.

Stacie

I've taken neulasta every time and being on TAC where every med has a different nadir period, nadir lasts from day 5-21. My bloodwork has been perfect every round. I am glad because I haven't had to quarantine except round 1 until we checked it. The bone pain is bothersome...but I guess for me I'd rather hug my grandkids with bone pain than isolate. I don't do homebound so well. All of our docs have there own practice patterns. When I asked my doc about a couple things he did differently than some of your MOs, he said you never know exactly what works for each person. It's like what works best aleve or Tylenol? Everyone's different. He has 30 years experience and trained at MD Anderson. I trust him... But he is human and I realize my life is in the hands of a mortal man. That is when God comes in mighty handy.

Pauletta

Hi Dancetrance,

I was admitted to the hospital on friday June 8th after I had a CT Scan with contrast done on my neck. They found a large "blood clot" on my right juggler vein. I didn't get discharged from the hospital til the 12th. Was on heperin and cummadin.

I am doing so much better. I have never had so much pain in my neck when I turned my head, coughed or laughed. Then I found out why. I had always heard of people having blood clots, but never knew they were so painful.

I had my 3rd A\C Chemo yesterday. So far so good. I know it hasn't even been 24 hours yet.

I hope you are doing well.

I have a 22 year old son, and his dream since he was 13 is to see the group "Westlife" in concert. The only problem was that they would never come to the U.S. He and a friend of his left for Scotland this past Wednesday and will be coming back next Thursday the 21st.

They are going to be in the "Front Row" in Glascow Scotland seeing "Westlife" perform on the 19th. Til then, they are taking tours of Scotland and just enjoying seeing a country neither thought they would ever have a chance to see. I miss him so much, but I am so excited for him, to finally have his Dream Come True! The group is splitting up at the end of 2012. So, he knew if he was going to be able to see them perform, it was going to be in 2012. They both have been saving their money for MONTHS! I was so proud of them both!

Take care and I hope you have a wonderful weekend!!!! 

Fierro6

Indigo - I, too am on dexamethasone, and it's prescribed 2 pills, twice a day on days 2, 3, and 4.  When the nurse was reading the instructions after my first treatment, she said, "You'll want to take those on days 2 and 3."  My husband said, "The bottle says 2, 3, and 4."   She double checked my chart and said, "Yes.  That's right.  She does want you to take it for three days."  

That made me wonder if I'm taking it long than is "normal" for that practice, since the nurse's "go-to" instruction was 2 days.  Or if it's because I'm dose dense (that always makes me feel like I'm too stupid to understand my dose.  "Sorry, I don't understand.  I'm dose dense." LOL)

So, this will be my first day off them.  I stayed awake until nearly midnight (DD is 16 and I like to know when she gets home safely from work,) and slept in my own bed (small victory!) waking up with some pain, but not as much as the last time I tried (small victory!) at 4:00 (small loss. LOL)  I'll get ready, get my hair cut as soon as they open the doors, and then get back home so I'm here when my body realizes it hasn't been given it's daily dose of uppers. 

chapter4

Gimme....you are sweet...I sent you a personal message.

rgina

Well I guess I am in the lucky category again that I only get the dexamethasone with the Aloxi at TCH infusion time, I don't get it prior to the Herceptin only, so it must be much easier to come down from the steriods and why I seem to only suffer fuzzy/foggy brain or fuzzy/foggy brain more than usual on post day 2.  Also since I'm 62 I'm post menopausal so don't have chemopause to deal with either, but reading what you all are are dealing with certainly put a new light on what my daughter went through for a year at 26-27, now I understand that so much better.  Good grief talk about roid rage she also took the pills prior/after and the IV infusion, I wanted to hide in the closet:)

Tried my new script for Temazepam (Restoril) last night for the first time, got a good nights sleep and even if I woke up for the bathroom or because I had an 18 lb cat on my head, I was able to go right back to sleep - a good thing.

Have a good Saturday...

Gemmie

Vicki--you are rocking the hair! Love the attitude!

 Sandik--hang in. You are strong, your are woman, you will do this!

Day 3 out from BGC and thus far my only SE's are mild. A bit of chemo brain yesterday and too jazzed up to sleep for a few hours last night. Speaking of chemo brain, i had trouble focusing on the printed word yesterday. Is there any research about chemo and eye sight SE's? I have an eye check app. next week. Maybe this is not a good time to order new glasses??

 

kjiberty

Gemmie:  Yes, my eyesight has become somewhat blurry and it is a S/E.  My chemo brain consists of losing my thought in a middle of a sentence and I remember about an hour later!  Glad you are doing okay with minimal S/E.  I hope it continues this way for you.  

Rgina:  Glad you slept okay last night. I decide to try magnesium last night (pharmacist recommended it as an alternative to ambien).  I slept okay.I woke up every couple of hours, but went right back to sleep.  I think I will try that exept around steriod/infusion time to see if that helps.   

vballmom

I had vision trouble after my first A/C.  Couldn't read the computer screen or books.  I, too, lost my thoughts midsentence. If I concentrated, I could get the words I was missing, but usually felt like "why bother?"  I also had bad headaches.  I did not have these after tx #2. 

My nail beds are starting to turn black and the sides of my nails are splitting down the cuticle.  What little hair I have on my head seems to be staying, and my eyelashes and eyebrows are still here.

My post-chemo meds go for days 2, 3, and 4.  I get Decadron, Zofran and Emend (only until day 3).  I have Compazine and Ativan only if I need it. My Neulasta/Neupogen shots were automatic and looking at my counts, I guess that's a good thing. Not sure which I'll get next week but going every day for a shot is a pain.

Dancetrancer - I am so happy for you. 

My parents are in town and I've been enjoying their visit.   Mom bought me a headband with hair that I like better than my wig. I think I will use that when I run errands and stuff.  I went for a mastectomy bra/prosthesis yesterday, but I guess I have to wait until after radiation. Today, mom is going to help me organize my medical bills. Ouch.

rgina

Vballmom - sounds like you are feeling better, enjoy your visit with your family.  Regarding organizing medical bills - what a PITA!  So many bills, for a single procedure, told a friend I was surprised I didn't have an individual bill for the graham crackers in the recovery room:):) Organizing took me hours and once I got it all sorted out the hospital (for 4 different procedures/scans) OWED ME $940.00, imagine that.  They actually got a check back to me in 3 days, even more amazing.  

Gemmie - good on the SE's, mild is good!

Fierro - look forward to seeing a picture of your new "do", sounds like your day has started good.

Husker123

I never see my bills. They go straight to the insurance. I can get online & see how much they bill but never get an itemized bill. Strange.

Still waiting to see what they are going to do with my Oncotype DX charge. My insurance rejected it & Genomic appealed it. I was told by my nurse navigator that I wouldn't be paying for it. That insurance would cover it or Genomic would. Somehow I doubt it.

I was so tired yesterday. I couldn't really enjoy the visit with my family. Today I'm much better. I got a whole nights sleep and that makes such a difference. I'm hoping that was the worst of the SE's for round 3.

rn4babies

Fierro..My MO prescribed the steroids 2 tablets the day before, 2 the day of, and 2 the day after my infusion. I think it is pretty much the standard of care there (although they forgot to give me a prescription for it for the first infusion).