Chemo June 2010

dsa-deb

june chemo BC sisters:

just jumping back in-------

i believe i've been on another dang trip around the world since last week's 2nd A/C treatment....i think i have had EVERYONE's SE's rolled into one whoppin sucker punch to my head & belly this past week---------bless each of you for pushing thru the horrible physical challenges that are faced, not to even mention the emotional roller coaster rides.

what would any of us do w/out this thread?!?!?!  i've not been able to get to back to this group until today & i see from the posts that everyone is fighting the 'good' fight with brave courage.

just coming back to this group after being nearly 6 feet under for the past 7 days is a refresing respite, even tho it's obvious from everyone's comments that none of us are having the best days of our lives!!

i'll try to keep up w/everyone between now & next wed (3rd A/C)---i'm so glad to know that i'm not the only one who feels like this beast has all but overtaken my body & brain------but, you are each encouragers & since i have to face this beast, i feel fortunate to be along w/you girls for the ride cause you're the greatest!!   

ok...enough of the 'sentimental' moment----i'm just in one of those funks that i can't seem to pull out of!   forgive me     

deb

julia2

Well, I'm back in the land of the living!  I seem to have avoided hospitalization, onc. says if no new SEs I can skip going to see him tomorrow.  My temp was still 100.5 this morning, but I feel SOO much better.  Think he wants me to stay with this regimen, said he only brought up changing regimens as he thought I was about to jump ship (I was, and maybe still am!)  There is something really unsettling about having people continue to pump shit into you that you're having an allergic reaction to, the logical response is to stop!

Julia

cheyenna

ok well she gave me something and i took it today but its not working yet, i just start to cry outa nowhere. i have such a long road i just wonder what to do with myself, will it ever be normal again? i think too much, im scared, and my mind wonders away... i dont get it because im such a positive person... i hate feeling like this. i really want my life back....i really do..im sorry to drop all this on you girls i know im being selfish but i cant help it i guess maybe more time for those pills to kick in its only been a few hours...... AC tomorrow #3

DesignerMom

dsa deb-  Welcome back to the land of the living!  Oh I feel for you girls having the tough SE. It's like trusting in blind faith.  To subject our bodies to these treatments, any logical human would think we were crazy.  Well, we are.  Crazy for life!  Stay strong girl!

julia2- so glad you are feeling better.  Stay strong.  This misery won't last forever.

Now if this ridiculously hot weather would just leave, maybe I could get motivated to exercise a bit.  I am just not a gym kind of person, but I love walking in our beautiful park....but not in humid, 94 degree weather!  Blessings and hugs to all of you.

Sherry9316

Designer Mom - why is it that you want to be motivated?  Don't you just like moseying around and lounging and napping and having others help out?  This is probably the ONLY time we will have a valid excuse to do those things. 

My husband said to me the other night in response to my praising him for how great he's been in helping me out and taking care of me - he said he was trying to make up for my hysterectomy.  I laughed and laughed.  I had my hysterectomy when I was 34 and had 4 children at home.  I could only take off two weeks from work.  I stayed in hospital 5 days (a few complications of course), came home and he disappeared.  My last week off, I was stll the mom - doing all the cooking, laundry and taking care of the kids.  Their ages were 3 5 6 & 9.  He did do the baths because I couldn't lift them and he did take the school kids to school because I couldn't drive - but that's about it.  I've never let him forget that!  But honestly I had forgotten about it until he brought it up the other night.  I laughed and laughed again.  He's more than made up for it this time.

Well, after 7 hours on my new medication combo, I'm beginning to feel woozy so I'm going to leave you ladies alone for a while and take a little nap.

dsa-deb

designermom:  failed to tell you that i LOVE your wizard of oz red sparkly shoes!!  what a pick me up each time i see them knowing that it is YOU who is standing in them  .  you are exactly right on about the blind faith.  i told someone recently that i've always been so pleased about learning from my dad the importance of being 'logical' & not 'reacting' to things.........HA HA---that flew out the window as soon as i heard the infamous words....'you have BC'---

chey:  remember that # 3 A/C is 3/4 of the way down the stretch!!!  keep your eye on the finish line & trust that there will be a time within the next month that # 4 will be behind you & the light you see WON'T  be a train coming full speed ahead toward you!!   not to say that you won't still experience some aftermath of drug induced sludge; but, you'll be out of the woods for the A/C treatments and the numerous SE's that follow each infusion.  hang in there---my heart is with ya!

deb

LuvUMom

Well, I took my mom for her second TC tx yesterday.  Barely two minutes into her Taxotere tx, I noticed her face was beet red -- as if she was holding her breath for the last two minutes.  Anybody ever have this happen?!  It was literally one minute, she was fine, the next minute, she was not.  I notified the nurse immediately and the onc was summoned.  She had to stop tx due to allergic reaction.  Weird thing is she was on Benedryl IV just prior to Taxotere.  She was fine in a couple of minutes after she was given possibly some type of anti allergic shot thru the IV.  She had very mild reaction the first time, just a little bit of redness around the eye lids. 

For the rest of her chemo, she will be put on AC instead.  Needless to say, we are very disappointed since TC was the weapon of choice.  We did so much research into TC and she tolerated TC very well the first round.  Now, she will have to deal with "the Red Devil" and who knows how she'll react afterwards not to mention possible heart damage... My mom will need MUGA scan and PICC line put in prior to AC.   Anybody on AC right now who can share your experience and what to look for (avoid) in terms of side effects?  

DesignerMom

sherry-  Yeah, I fantasize about just hanging out, finally organizing my closets and rearranging things.  The problem is, I've always been half of the breadwinner picture .  DH and I are both crazy entrepreneur/freelance workers.  "No worky, no money".  Because of this stinkin' economy, we are both "under employed", so I have to keep trying to make a living. I don't know why I am not more worried about things.  I just have a strong feeling everything is going to work out fine.

dsa deb-  Next to red, sparkle is my second favorite color.  And The Wizard of Oz...well, need I say more?

LuvUmom-  I'm so sorry your mom had such a bad reaction.  Just know she did get some benefit from the TC.  Now she will cover her bases with another appropriate chemo.  I bet the outcome statistics are similar for those chemos.  You might want to check out the cancer math site.  You can plug in all your specifics, change chemos and it will generate projected outcome.  I found not that much difference between chemos for me.  Just google "cancer math" and you will find it.  I know you are a huge comfort and blessing to you mom.  Lots of these ladies are on AC.  They will help you so much with particulars.  Give your mom a hug from all of us. Oh, one other thing.  As I was struggling with which chemo to do, and my Onc could not tell me which would be best,she said "Chemo is not a science, it is an art".  If your Onc is honest, I bet they will tell you they really don't have proof on chemo regimens.  Every body is so unique.  

mari-12

  Hi All June gals......Yep I'm a shy one who's been checking the site to see how everyone is doing! I will start my 3rd of 4 rounds of taxotere/cytoxan on Monday and it's been a tough road. I'm halfway through! I'm usually down and out for a good 10-12 days.  S.E. have been progressive and difficult to manage especially the abdominal bloating/distention that is just about excruciating and awful leg pain that can't seem to be managed with Advil. I've hesitated to share this information as it is such a downer and I'm trying to stay positive. This is my good week now.

   I give all you gals credit for managing work and your young children. My dtr. and son are both grown and trying to help. So that part has been great. I actually cooked dinner with my DD this afternoon.  I can't remember the last time we did that, so it was fun! She especially has tried to entertain me on my good days. Yesterday, the 3 of us went to LeCirque for lunch. It's restaurant week in NYC!! Tonight my husband made a delicious peach pie! Tomorrow it's lunch with some gal pals. So life is good!

  My Oncologist has been mostly absent and cold.  I've been dealing with the N.P.'s for advice. They are very knowledgeable and have a heart in comparison to her. Thank goodness for this site and you gals for all your 'tips' in getting through this mess. The latest is the drippy nose and eyes. Very attractive. 

DesignerMom - We have to meet up in NYC one of these days when I can get there on my own!! I too think it would be great to meet these extraordinary women we are in battle with. We can toast and toast to the end of this chemo nightmare!!! 

lauriez

Anyone on A/C having their hair start to grow back already? I am on day 8 of round 3 and noticed a few days ago that it appears to be growing back. On day 14 after 1st round my hair was coming out in chunks. My sister drove in with my parents and gave me a buzz cut. I didn't think it would even bother me to lose my hair but it made me sick to my stomach when it came down to my sister buzzing it. Weird. It was getting in my mouth and food so I felt pretty strongly about buzzing it. A few days later, the little bristles were falling out and bugging my neck, so my dear father shaved it for me. We used a razor and had no knicks. Now, day 8 after my 3rd tx, it seems to be growing back in! It rubs on my pillow and hurts. Has anyone else had this experience? I feel like shaving it again because it's not smooth anymore. Can hair grow back in this quick while still on Adriamycing? I'll see my onc tomorrow and ask him as well. Stay cool my friends who are in a heat wave. Here in Michigan, we sure have been tropical for the last 2 weeks. Between my hot flashes and the heat and humidity, I just want to go around bald for comfort.

DesignerMom

mari12-  Good to hear from you.  I'm so sorry that you are having such SE.  I, too have found the digestive SE the most bothersome.  I have been taking acidophilus a few times a day.  My Onc said it was fine.  I think it has helped.  It might be worth a try.  Good for you taking advantage of restaurant week.  I always seem to miss it.  Maybe I can get DH to go!  I would definitely like to organize a get together when we all get though to the other side.  Won't that be a celebration!!

meliss

Luvumom:  I had an allergic reaction to Taxotere also and had to change regimens. I was given a choice of AC or CMF. I chose CMF for several reasons I will be happy to discuss if you want to PM me.

 DesignerMom: I am SO with you on the lack of motivation. I have been doing okay work, but once I get home, I am not interesting in doing much of anything that requires any effort. I think if I were not going to a job working with other people, it would be very difficult to be self-motivated with work. I am taking a summer class for in my graduate program, and it has been very hard to do the work. Normally I am an over-achiever with my classwork, but not this time! I do find that if I can myself started on something, I can usually stay with it. It's just hard to get the energy for that initial kick start!

dsa-deb

luvumom:    designermom is correct...there are several of us who are on that red devil A/C & bemoan as we might, we are still forging ahead, due in part to all the ladies on this thread who shout out for us when we're in the pits of misery!

i'll be more than willing to tell you what my experience has been & what i know about A/C & the reasons for its choice over other cocktails-----just PM me & we can chat, if you are interested.

lauriez:  you're about 13 days ahead of me on the A/C schedule, but, i've been told that the hair won't reboot again until the A/C has run its course & for me, the next 12 weeks afterwards of Taxol will be when the hair starts to rebirth itself, altho the eybrows/lashes may come & go during that time, too.   so, if you're see a few strands, GREAT!  as we've all said, these treatments affect us in different ways.   keep us posted!! 

RS711

Update on the acne situation... I went to my local organic health store and the lady told me that the best remedy for blemishes is tea tree oil. So I bought a small tube to test it out.

mari-12

DesignerMom: Is there a particular acidophilus that you take? I think it's an excellent idea and I will ask about it on Monday. I want to try anything that might be helpful to alleviate the misery. I will wait to get the green light from the N.P. 

Can you believe that my oncologist gave me the choice as to A/C or T/C?  I was shocked and said to her you're the Oncologist and given my stage, grade, Onco type, Mammoprint etc. You should be telling me!  Instead she gave me the pros and cons and let me do my research and choose. I was so angry! I sat there like a deer in headlights thinking this is truly a crap shoot and she assured me that it didn't much matter which one I chose. It's water under the bridge now and all I can do is continue to move forward and hope for success. This Onco. btw is the head of her dept. with an impressive background. So much for that! Thank goodness for the N.P.'s!!

As far as hair goes...I'll be having dose 3 on Monday and I'm still dropping 1/2" hairs all around. At the same time I think I need another buzz. It's bizarre!. I wonder if I'll go completely bald.The lower eyelashes are also thinning. Hey I'm just happy it's the summer because I definitely have the buzz cut and it keeps me much cooler. I just hope it all grows back.

cheyenna

For all our AC girls that are heading towards Taxol, once a week vs every 3 weeks, i talked to the ONC nurse at the hospital, over 30 years experience, she told me as far as going after that cell that MIGHT be floating around in the body, there is no difference in its effectiveness whether we go once a week taxol,or every 3 weeks, she said once a week is less side effects and about an hour in the chair, every three week she said patients seem to have more bone pain. The Neulasta shot is not needed, ill be in the chair about 3 hours  if i go every 3 weeks. she talked about the tingling in fingers and toes but says very rarely does it last, you might feel it a bit more with the every 3 week but really its the same as the once a week it just hits you later..she said it does not effect your blood counts. it is much easier on your hair and your body..what are your thoughts?

i just got back from AC #3 no problems and i did well,  one more to go!!!

grneyd5600

Chey, that is similar to what I was told as well.  I am doing the every week option because it is how the clinical trial I am doing does it.  I dread the every week but figure I will get through. 

Glad you made out well with #3.  I am wiped out from mine. Fighting nausea for the first time but winning that war so far.  Just eating small meals.  I did work today but never got out of bed yesterday.  Shot was on Tues.  Hopefully I can regain and regroup over a quiet weekend. 

Hang in there my sisters!  We will get through.

cheyenna

luvumom, im on AC as well as others, ive been very lucky as far as side effects go, mine have been all emotional....i stay on top of my meds, make sure she tries to eat 6 meals a day small bland ones, she should rinse with the salt water,baking soda at least 3 times a day to keep from mouth sores. i found my throat and upper back hurt a bit the first couple days after tx. she will get very tired so have her rest... my port was the best part of the whole process, they were wonderful, i had no pain, after i just felt a lil sore in the upper part of my neck and shoulders for about 3 days, i do not feel the drugs going in through the port,unlike the IV. plus it will save her veins for blood draws and such. The Red Devil will wipe her out with fatigue but we will all pray for NO other SE.some of our AC girls have had a hard time but are bouncing back well, the one thing we all have here is humor and it really helps. keep her positive..i hope this helps a bit, ive only had 3 AC and need one more to go...good luck to you and your mom, your in my thoughts.

cheyenna

dsa-deb, thank you so much, yes im almost there...im seeing a light but not that sound.lol no train!!!

grneyd5600. yes i think every 3 week would be better for me, like you,i dread the thought of once a week.! but yes your right we can do it either way. ok your ahead of me so i will really stay on top of the meds.. feel better, im thinking of you,

love Chey

julia2

Hey girls,  Just throwing this out for feedback, I'm thinking about changing oncs.  I like my onc, a lot, he's wonderful, but I don't want to go there for my infusions anymore as essentially I am now afraid of the nursing staff.  I like the onc I got a second opinion from, and I hear good things about the infusion center there.  Thoughts?

Julia 

  

DesignerMom

mari12-  I always keep a bottle of acidophilus in the fridge.  I used to give it to my son when he had to take antibiotics, or if anyone has a stomach upset.  My brand is called Jarro-dophilus.  I think there are many good brands.  If you go to the healthfood store, just make sure it is from the refrigerator and "live probiotics".  I take capsules.  I think it definitely helps.

cheyenna-  You sound so much better.   Good for you!  Look how far you have come.  You are on the home stretch now.

It is stupid hot here in NYC.  I feel like a shut-in.  I just can't bear the thought of going out in weather that feels like 104!  So much for exercise!

DesignerMom

julia2-  Wow, that would be a tough decision.  If you like your Onc, but not his nurses, could you discuss it with him?  If he is good, I'm sure he would want to know if the nurses were less than professional.  I don't know where you are located, but if itis a large city, sometimes doctors are affiliated with several hospitals.  Perhaps he could still oversee your treatment at a different facility?  I would definitely have a problem if I did not have confidence in my chemo nurses.  What's going on with yours??

cheyenna

julie2-, i agree withe Dmom, to me those nurses are more important then the ONC, i would talk to him first and if nothing changes you need to be where you feel safe and secure!!!!! dont cheat yourself out of that!!! shame on those nurses!!!!!

Dmom, im so trying to be, i got some other meds that should help till i get a grip, i feel so bad cause our girls have had some hard SE and ive had none but emotional, i feel like a big baby!! my heart really does go out to all of us!!! this has just been so much harder then i thought!!! but i truly am trying!! thank you  for putting up with me.... oh we were 109 today and its a dry heat....blaaaa

julia2

DesignerMom,

They just dismiss what I say and are insufficiently concerned about the fact I'm reacting to the Taxotere, IMO.  My chemo this week was totally screwed up because a) they didn't give the Taxotere slowly like I asked them to, and i had a reaction.  b) Once I stopped reacting and was getting it ok at half speed, they  uped the speed to full speed without telling me and I reacted again. c) Due to all the time lost due to me reacting, and then finishing the T at low speed, we were out of time to do the C and I had it next morning. d) The Cytoxan was given to me the next day by a different nurse with no pre-meds and again at a higher speed than I was really comfortable with as I was getting a headache.  I told her about the headache, she implied it was probably just stress.  By the next morning I had a temp of 102.6, was this related to lack of pre-meds?  No idea.  Bottom line, if I'm staying with TC, and I'm at risk of reacting, I'd like people to be a bit more interested in preventing that. 

Julia    

Poppalicious

Mari12 - I hear you on the whole bloating issue!  I too am on TC (doing 4 rounds like you, just had my second one on the 16th) and the bloated stomach/gas issue is not fun, especially when you don't think like me and agree to have a house guest around - at least she is...( or maybe 'was' ) a close friend who laughed along with me when an unintentional noise escaped.  Apart from taking acidophilus daily, eating smaller but more frequent meals and popping some acid reducer before hand seemed to help me a bit. 

My hair is starting to come out too; I already cut it short to prepare but when it started clogging up the shower drain I got depressed about what was to come...luckily my husband came up with the wonderful idea of giving me a 'bowl cut' and then a 'mowhawk cut' for laughs (it put a huge smile on my face!) since it would all eventually come out anyway.  We finally ended up cutting it really short all over and it feels much better now.  Some from other threads on this forum recommend biotin to help promote hair/nail growth (although it doesn't work for all) after chemo, I plan to give it a try.  

All the best for the SE for your next round!  I can't wait for my third round as it means I will almost be done.  Take care for now.

RS711

Hey my friends... here are some nutrion tips you may be interested in...

Health Tip: Help Prevent Anemia (HealthDay News) -- Anemia occurs when a person has too few red blood cells or insufficient amounts of a vital blood protein called hemoglobin. This means your blood may not be carrying enough oxygen to all parts of your body.

Some types of anemia are preventable, the National Women's Health Information Center says. It offers these suggestions:

• Eat plenty of iron-rich foods, such as tofu, green and leafy vegetables, lean red meat, lentils, beans and iron-fortified cereals and breads.
• Eat and drink vitamin C-rich foods and drinks.
• Avoid drinking tea or coffee with your meals, as they can affect iron absorption.
• Get enough vitamin B12 and folic acid in your diet.

dsa-deb

good morning my fav june 10 chemo group!!

i finally ate some red meat yesterday (have tried to stay away from it) & i swear i feel like a new woman today----is that coincidence?????   after my recent week in the pit of the earth, it's as if i've never been there----what's wrong w/that picture?

chey: soooooo glad you are the upswing!!  like u said, just 1 more to go & no roaring train sound!!

rs711:   your health tips are exactly what my onc & nurses have told me---almost word for word.  even tho i'm neglectful about all of those at various times, i'm sure i might be in better shape if i held true to each one of them.   this anemia/wbc count being at 0.00 this week terrified me & so i have promised myself that i'll be a good little wbc count girl from now on.   even that dang neulasta shot didn't do the trick for me either!

dmom:  it's been 100+ degrees here in texas & the forecast indicates that it is here to stay well into august...........& the heat here is unlike chey's dry heat in california.  ours is usually the high digit heat w/high heat index & high humidity-----absolutely suffocating to walk out the door from being inside ac home/buildings.   but, that's just how it is & even tho i hate it, for now i'm stuck w/it!

julia2:  i can't imagine having to go back for a 2nd consecutive day for the 'rest' of a treatment!!!  BLESS YOUR HEART!   i totally understand about that cytoxin drip----mine almost has to be a drip a minute in order to keep me from getting a semi-truck hit headache...literally, i'm there nearly 3 hours for the cytoxin because i have such an adverse reaction to the speed of infusion if it's too quick.   file a complaint on those ladies!!!   it's your body that's goin thru this wretched treatment & compassion should be one of the 1st requirements of training they should exhibit!  as for changing staff---that's a tough call & only you can make it----good luck!

chey: forgot to say this----i've chosen the weekly 12 taxol because i want to get it OVER WITH!!   it is the more aggressive method, but, i've heard that the tingly hands, fingers, feet issue can be more pronounced w/ the every 3 week tx.  but, you know how different onc/nurses are about tx's anyway---so, it's kind of a crap shoot.   i just figured that by the time i've had 12 of those buggers that i would not want to stretch it out any longer than necessary---besides that, i have 6 weeks of daily rads to go after the taxol----so, a year of our lives, at minimum, is like spending w/a  companion of sorts that we HATE!!  . . i'm not a good or happy camper w/all of this anyway--so the 12 weeks sounded horrible, but the better of the 2 evils for me-----do what YOU think is best for YOU!

for everyone w/the prickly hair problem:  isn't it the most annoying thing ever?!?!?!   neither of my 2 DD wants to 'take a chance' to shave my head for fear they's nic me & make me bleed, etc.   i've got the 1/2 inch buzz since 2 wks ago, but, what's left is like everyone is saying--falling out & not doing it fast enough, much less that it's painful along the way!!

did anyone shave it to the 'slick side'------if so, how was it?!

deb    

    

grneyd5600

Girls, I have to tell you I couldn't get through this without you all.  I am so blessed that I have a sisterhood to share things with.  Your posts all bring me comfort even when I can't respond to them all.  Thank you!

I am feeling a little better today.  I still won't wander far from the house but at least I got out of the bed today.  Not feeling very queasy today (at least not yet).  HB went to MD to check on his Dad for the weekend.  I was all encouraging about it to start with but now that I have had a couple days to lay around and "stew" about it I am a bit sad.  I know this is hard on him and he needs a bit of outlet but the being home alone for the weekend after TX has put me in a "funk".  Not that I will admit that to him cuz it would go totally against my "caregiver" role.  Maybe I will force myself to take a walk or something. 

Deb - about the prickly hair problem.  I buzzed down as close as I as I was comfortable and then I have been rolling it daily with the lint brush.  It is just about "smooth" now.  I highly recommend the roller.  It seems to help.  The UPS guy told me I was "adorable" bald yesterday.  Made me laugh and I reminded him I still wasn't giving him a tip. 

 Hope you all have a good weekend.  I am keeping the chin up! 

dsa-deb

jackie:  girl, keep your spirits up----i understand about the 'alone' issue----i live alone altho my daughters check on me all the time & i have good friends/co-workers that prepare food, etc.----but, when you're by yourself, time can pass slower than we want, especially when we don't feel good.   sorry about that nausea thing!  it's awful, huh?!   you've been my inspiration about buying hats---i swear i've got enough now to open up a hat retail store!  i haven't bought a wig & don't intend to--it's too hot here & i'm too uncomfortable about trying to mess w/it.  i thought i'd go the scarf route & have a lot of those, too---but i sweat way too much when i wear them.  so, floppy hats/straw hats/ whatever i can find is what i wear & most everyone always makes a comment about how good they look......so, thank you for introducing me to hats!!   since it's summer, wearing them is perfect.

i've been using the lint roller trick  & i agree that it helps tremendously.  it's just that i have LOTS of prickley's because my hair was so thick before chemo.  i've tried to smooth as much off the head as possible each time i shower, but i can't seem to get the very top & upper sides (crown area) to shed completely.  

try to pamper yourself while hubby's gone------!

deb

   

grneyd5600

Deb

You made me laugh out loud!  I am so addicted to hats!!!  I swear I have one for every pair of shoes and I have LOTS of shoes!  Ok, confession time, I am working from home but have been attending online meetings.  I actually dress up so I can attend the meeting.  Somehow I feel like I am getting dressed up for work.  That means I have to have a hat for every suit or dress I have.  The Onc nurses are so excited to see me coming in because I have worn a new hat every time.  So, girlfriend...welcome to my addiction! 

Thanks for words of encouragement.  I needed them.  I am upright and stable!  Thanks!!!!

 BTW my crown is still stubbly too.  Maybe we are twins? 

Hugs!!!!