September 2013 Chemo Group

Options
1…6791112…143

Comments

  • AlohafromElaine
    AlohafromElaine Member Posts: 1
    edited September 2013

    Aloha.  I am ER/PR+ Her2- begin tomorrow Sep 11 with Andriamicin.  Trying to catch up on all these terms.  Will be getting AC then Taxol for 12 weeks.  Chemo before surgery.  Diagnosed July 30.  Left breast and lymph node.  All this is new to me.  Trying to learn quickly.

    Hear all these horror stories about nails falling off.  Honolulu doesn't have those cryo gloves.  Looked on line but it's soooo expensive.  I can't afford it.  You all know how fast the $ run up.  Couldn't believe in a couple weeks I ran up almost $2,000.  Co-pays and medicines and OTC they tell me to get.  Thank goodness for credit cards. 

    Praying my body will be strong.  No infection.  No nausea.  No allergic reaction.  Came off an illness two years ago that left me not as I used to be.  Any info you can share on how to get through this.  Like - my oncologist doesn't prescribe Zofran (something else) but everyone kept telling me Zofran is a miracle drug.  Get Zofran to prevent nausea. 

    Bit overwhelmed. 

    · Share on FacebookShare on Twitter
  • JellyK
    JellyK Member Posts: 150
    edited September 2013

    70charger UCH how frustrating!  Your body is going to get a bit of a shock with all of these meds, just roll with them as best you can and call the docs whenever you need to - nausea from a nausea med isn't entirely out of the ordinary but the docs need to know you reacted that way because there are usually many many other options they can give you next time.  I'll be hoping everything moves more quickly and you can get in and get started.

    Aloha Elaine, it IS very overwhelming at first, but once you get a ways up the learning curve it gets easier.  Have you been to the thread "Chemo for newbies" I think it is?  It's got a LONG list that I couldn't even read all the way through at first but was very helpful.  I made 3 lists of OTC things - things to definitely buy because it's definitely going to be an issue, things I might need, and things that would be handy.  I only bought the things on the first list, and have had the other two lists available to glance at every so often.  That kept my costs down.  You won't lose your hair right away, so if you're paycheck to paycheck like me you don't need hats/scarves/wigs until closer to your 2nd treatment, and some if not all can be found for free through different cancer groups.  The big dangerous SE's like constipation, dehydration and weight losss I made sure I had supplies for - stool softeners, laxatives, instant breakfasts - but not gigantic supplies of them in case it didn't turn out to be an issue.  I found things like hand sanitizer, pill boxes (definitely necessary for me, cuz chemo brain eliminates my ability to keep track of all these meds) and a lint brush (for body hair once it starts to go) at the dollar store, whereas they were like $3-5 in a regular store.

    You can do this, just take it one day at a time.  Do a little bit of research and prep, then move on to a new subject or go take a walk.  Let your brain absorb it at a pace you can handle.

    Oh and my pharmacist says a lot of docs are dropping Zofran from their automatic list, but if you end up with nausea and what they give you doesn't work just be the squeaky wheel and make them give you something else.  One thing cancer teaches us is how to advocate for ourselves - a hard lesson for a lot of us women, but a valuable one :-)

    · Share on FacebookShare on Twitter
  • diane49
    diane49 Member Posts: 37
    edited September 2013

    Thank you ladies...hope you are having a great day today

    KBee thanx for that tip about emend...I am in a study which is trying to make it the standard so I may actually be getting it already...hope not lol

    The researcher called yesterday and hubby gave her an earful while I slept so I may be asked to withdraw lol...quiet man but he has become my champion thru all this...fought my own battles for the first 30 years-he must have been taking notes

    Nurse is due within the hour so I better get cracking...crank some tunes and hide the mess

    Take care of yourselves....you are the only you we've got!!

    · Share on FacebookShare on Twitter
  • lighthouselady
    lighthouselady Member Posts: 752
    edited September 2013

    JellyK - YAY for a fun buzz party!  My sis-in-law did that - her her nephew shave her head and even posted pictures on Facebook of her smiling.  I think it's so important to take control and not let us be a victim to one more thing!!  My mom has had a hard time with this cancer thing, too.  It doesn't help that she's in NY and I'm in TX, so she can't BE here for me (although she is coming for a visit on Saturday...yikes).  My hubby finally had to ask her to stop talking to me in "the cancer voice" because I don't need anyone's sadness on top of my own!

    70charger - I'm sorry about the mix-up and your stress.  You're right - like we need one more thing to be stressed about?!?!?!?  I wonder, everyone seems to have "pre-meds" to take, but I don't!  Last time I just showed up for my infusion.  This time they did give me Emend to take for the nausea the morning of, but that's it.  Am I the only one who doesn't have to pre-med at home first?

    Aloha - You and I are sisters!  I was diagnosed 8/1, ER/PR+, HER2- (left breast & lymph node also) and am having neoadjuvant chemo (ACT) before surgery.  Good luck!!

    Diana - I hope you are feeling better!

    I'm going in for labs this morning to make sure my counts are good enough for chemo tomorrow.  Wish me luck - I want no delays!!!

    On a side note - I found out last night that my daughter's softball team (they are 7) is having pink sparkly breast cancer ribbons put on their jerseys for me.  Awwww.

    · Share on FacebookShare on Twitter
  • Pam358
    Pam358 Member Posts: 294
    edited September 2013

    Josgirl - That port will be golden since they have had trouble finding your veins. Good Luck with your first chemo on Thursday, we will be waiting to hear your thoughts on the fasting idea.

    Art 123 - glad to hear your wife's 2nd taxol treatment went smoothly.

    Diane - amending the anti-nausea med plan sounds like a great idea - I hope it works.

    Deborahanne - sorry you had such an awful 4th day, but glad day 5 was better and hope they continue to be better.

    KBeee - glad you mentioned the Emend working - my MO mentioned using that med when I start my chemo. It was interesting to read that you are planning to shave your head before chemo to get it done and move on. I have been contemplating cutting mine shorter before I even start just to stop thinking about. I'm not ready for the shaving yet, but that's probably because I don't have a chemo date set - I've been told probably end of the month as I need to wait for clearance from BS.  My hair is currently long and very thick but I think there are more strands than usual falling out just from stress. 

    JellyK - Your hair looks great!! Happy to hear buzz party went well, but poor Mom. Also happy to hear you are feeling better after this cycle of chemo. You are right staying ahead of some symtoms like pain and nausea is best.

    70 charger - I think the pharmacy should have told you about the med change, we have enough real stuff to worry about they don't need to invent new things!

    Elaine - I hope your treatment goes well today!

    Lighthouse - good luck with your labwork.  That was so sweet of your daughters coach and team to wear the sparkly pink ribbons.  It's a good life lesson in compassion at an early age.

    · Share on FacebookShare on Twitter
  • batcatlady19
    batcatlady19 Member Posts: 138
    edited September 2013

    One note about Zofran - it's major side effect is headaches. I get migraines, so my onc warned me about this & thus I left Zofran as a last resort (luckily I haven't had any nausea). There's also Compazine which works similarly but isn't quite as strong.



    Ask your doc for all possible options :)

    · Share on FacebookShare on Twitter
  • JellyK
    JellyK Member Posts: 150
    edited September 2013

    Josgirl, I find that they have more trouble finding a vein when I'm dehydrated, and of course the port insertion was a surgery so I hadn't eaten or drank anything since the night before - my hand was bruised for 2 weeks because of it.  If the lab you go to for pre-chemo blood work can't access your port (not all phlebotemists & nurses are trained), just make sure you're super hydrated for lab sticks, that seems to help a ton.

    Lighthouse, uch the 'cancer voice' I hate that!  Luckily I'm crazy active on Facebook, telling people all kinds of things they probably don't want to hear, lol, so I don't have many people left who talk to me in that voice :-)  I talk to anyone who will listen about everything, and am super open about all of it to my kids, even in public, so that seems to help - we set the tone for how people should react, right?  Kudos to your hubby for setting things straight!  Good luck on treatment #2 tomorrow - I have a theory that the reason I'm doing better this time around is that my body didn't go through a shock of all those new chemicals, but who knows, everyone seems to react differently.  Oh and I don't have any at-home pre-meds - just my own beefing up of the stool softeners in anticipation of the rocks that define the first few days, lol.

    My phrase for today:  "I prefer the company of happy people who are believers in magic, and of magical people who are believers in happy."

    · Share on FacebookShare on Twitter
  • JellyK
    JellyK Member Posts: 150
    edited September 2013

    Oh and lighthouse, I really hope your visit with your mom goes well - maybe once she can see you and hug you and do some things for you while she's there she'll feel better and realize how strong you are :-)

    · Share on FacebookShare on Twitter
  • Hydavis42
    Hydavis42 Member Posts: 52
    edited September 2013

    Hello ladies i am set to begin chemo tomorrow. 4 dose dense treatments of Adriamycin and cytoxan followed by 4 treatments of taxol my onc says they will be given every 2 weeks. I am very nervous about side effects. Can anyone give me some advice or pointers on how to prepare for this tomorrow. Please HELP!!!

    · Share on FacebookShare on Twitter
  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited September 2013

      I have an appointment tomorrow to get my long hair cut. I don't have a start date on chemo yet but it will be within a couple weeks. Just figuring getting a spunky funky style now, enjoying the change for a few weeks til it's all gone will be kind of fun. (we need anything that can be construed as fun, don't we?)

     I have been on a hellava roller coaster ride. My journey has already started with a few detours, or maybe I will just say the pathways have changed 3 x already in this month long trip so far. (surgeries/treatment) Just have to go with it! Undecided

    · Share on FacebookShare on Twitter
  • lovewins
    lovewins Member Posts: 881
    edited September 2013

    Welcome VintageGal....it sure is a roller coaster ride...i don't even like amusement parks in real life.  I hope you love your hair cut!  Best of luck with your up coming treatments.

    Hydavis....I was a wreck my 1st chemo treatment too.  It turned out anticlimatic for me and that was ok!  The best advise I would give is to drinks a lot of water and stay on top of nausea.  My 3rd day was the roughest but it can be different for everybody.  Good luck I am hoping for the best for you.

    · Share on FacebookShare on Twitter
  • Art123
    Art123 Member Posts: 115
    edited September 2013

    Hydavis - I'm nagging my wife to keep drinking water, before during & after. It flushes u out and also widens your veins if you are getting IV. 2 treatments down and she's pretty much still doing normal routine.

    · Share on FacebookShare on Twitter
  • lighthouselady
    lighthouselady Member Posts: 752
    edited September 2013

    Hydavis - I'll say a prayer for you (and meet you at the AC "bar" - my 2nd tx is tomorrow!).  There are a ton of things you can do/get to prepare, but honestly you really will end up finding what works for you.  The biggest one is to stay on top of your meds.  The nurses told me to start taking my nausea meds at dinnertime, but I ended up getting sick before that!  So tomorrow I will take them starting as soon as I get home.  Also, one thing I started doing is keeping notes each day - how I felt, what meds I took, what I was able to eat, etc.  That way I kind of know what to expect and can have an idea of what I'll be able to tolerate each day.  I would try chewing ice or drinking a cold drink during your infusion, and having a mouth rinse handy at home.  I use Biotene toothpaste and mouth rinse, and honestly the first 5 days after chemo I did that about ten times a day.  The yuck mouth is the WORST!  Water didn't taste good to me until the last couple of days, so I stayed hydrated with sprite and lemonade.  Eat something every couple of hours even if you don't want to, because an empty stomach makes everything worse!  The actual chemo infusion is nothing... it's just waiting to see what your body will do in the hours and days after that gets interesting.  Smile

    · Share on FacebookShare on Twitter
  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited September 2013

    Sminns: Thanks for the info! I wonder if insurance would cover implants later? Probably not. Oh well at least I know it is an option at some point. 

    JellyK: Glad the buzz party went well! I am going to have my 3 and 4 year olds cut mine. I am going to leave a strip down the middle and sport a mohawk for a bit though :O Why not?! It is something I will never do again lol. I think I may dye it rainbow colors too. I used to do funky stuff with my hair before, although I didn't step too far from a couple of stripes of blue or green or red. I think this chemo is affecting my brain. Is there such a thing as chemo induced insanity? 

    I went to see my onc today and my blood counts are normal. He said that hemoglobin and platelets may crash out in about a week though? My white count is actually above normal thanks to the neulasta. Good thing too because I was working with staph and E coli in class last night. That was a little unsettling. My headache is GONE today! That is the best feeling ever! Onc also said that the hip pain I was having was not neuropathy but was a withdrawl symptom from all the steriods I had gotten; the pain is gone today. They have already changed my dosages to help reduce some of my side effects. 

    I am sorry to everyone who is suffering, but I promise it WILL get better! And the number one rule is to bug the helll out of your doc about anything that is bothering you! Nothing is too big or too small! That is what they are there for and why they make the big bucks. They should be 100% committed to making this as smooth of a period in your life as they possibly can with as few side effects as possible, and if they are not then go see someone else. I think a lot of us women, especailly moms, are so used to putting ourselves last and not being the squeaky wheel when it comes to our own care. SQUEAK ladies! Make sure you are comfortable and getting through this as best as you can. 

    · Share on FacebookShare on Twitter
  • tdalanno
    tdalanno Member Posts: 17
    edited September 2013

    Hi All,

    Six days out and still not feeling too well.  I'm hoping that this doesn't last continuously.  Had an ultrasound of my ovaries yesterday and a little nervous that the cancer may have spread.  Chemo was on Friday and I felt fine.  Saturday I felt okay and was able to stay ahead of the nausea, but had issues with flushing.  Benedryl did the trick.  Sunday was bad - tired and achy.  Monday was better but still tired and achy.  Tuesday still tired and achy.  Wednesday - better but still not feeling as good as I would like.  Here's hoping that Thursday is back to normal.  I've got an appointment to shave my head on Saturday.  I have long thick blonde hair so this should be interesting. 

    · Share on FacebookShare on Twitter
  • Margetoday
    Margetoday Member Posts: 2
    edited September 2013

    Hi everyone, I am so excited to see a September group.  I had my first dose dense ac chemo on 9/5 with neulasta shot on 9/6.  They gave me premeds with steroids (decadron?) and previcid.  I had rx at home with additional compazine, zofran and decadron. 

    Nausea and acid reflux hit me the next morning.  Then on Saturday, I had an allergic reaction to compazine.  It caused facial contortions and clinching of jaw.  It was remedied by benadryl but it was scary while happening.  The jaw clinching did damage a rear molar so I see the dentist next week. 

    I have had constant nausea but only vomited once.  The zofran seems to prevent the vomiting but does not alleviate the constant nausea.  I appreciate all suggestions on how to battle the nausea.

    I have tried to push fluids but can only drink in small sips.  Eating is absolutely out of the question.  The smell of all food gags me.  My dh (thank heavens for him) came up with a concoction of crushed fruit, Gatorade and crushed ice that I eat throughout the day. 

    Due to the nausea, I  haven't been able to work.  It adds an additional financial strain but I keep telling myself that my health is most important. 

    Good luck to everyone in the September group and Thank you for all suggestions.

    · Share on FacebookShare on Twitter
  • Art123
    Art123 Member Posts: 115
    edited September 2013

    AC sounds tough, not looking forward to when my wife has that.



    She got her wig today, it's cute.

    · Share on FacebookShare on Twitter
  • 70charger
    70charger Member Posts: 963
    edited September 2013

    Welcome all newbies, sorry to meet you like this, but er are here for youHad my 1st chemo this morning, in & out in 3hrs.  That was a nice surprise as they said all day.  Happy dance!  I have tingling in my hands & feet but that is it.  I know that will change over the next 3 weeks.  I am prepared!

    · Share on FacebookShare on Twitter
  • Hydavis42
    Hydavis42 Member Posts: 52
    edited September 2013

    Thanks lovewins.Did you take any nausea meds the day before your treatment or did you just wait until you had your treatment. i have already picked up my prescription for nausea and am very tempted to take a pill before i go to the infusion room in the morning.

    · Share on FacebookShare on Twitter
  • Hydavis42
    Hydavis42 Member Posts: 52
    edited September 2013

    thanks lighthouselady i will try all of those and see what works.  i guess i should be resting up for tomorrow but cant seem to settle my mind long enough to do that.....whew......I thank god for each day but can tomorrow hurry up and come and go

    · Share on FacebookShare on Twitter
  • Hydavis42
    Hydavis42 Member Posts: 52
    edited September 2013

    Art123 thanks i am pushing the water but it is hard because im not big on drinking alot of water. I know i will need to in order to help these chemo meds flush out. I am glad your wife is doing well. Please keep me updated on whats working the best for her.

    · Share on FacebookShare on Twitter
  • lovewins
    lovewins Member Posts: 881
    edited September 2013

    Hy...what I did and of course I would advise you to ask your DR is take an xanex in the morning I asked permission from the nurse.  But I really didn't need it as I had it built up in my mind that something would happen immediately.  This is not to say that anyone could have a reaction...but I didn't and they gave me somthing to relax me in the first IV, they also gave me something for nausea thru the IV.  When I asked the nurse about it she said at the first twinge to take it.  I ended up taking it because I thought I was nauseous later that evening.  Going forward to my 2nd treatment I am going to be more cautious because I felt I over medicated myself and those pills were stronger than I imagined.  Hope this helps.  Take deep breaths and relax as much as you can...I know it's hard.  We are here for you.

    · Share on FacebookShare on Twitter
  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited September 2013

    Josgirl: Please update about the fasting when you can! I am super interested in this. The science of it does make sense. I am just wondering if I would be able to drive myself after fasting for 48 hours + chemo =/

    · Share on FacebookShare on Twitter
  • josgirl
    josgirl Member Posts: 231
    edited September 2013

    Mamastewart- I am at 44 hours right now and mostly have just had a low grade headache on and off all day. Im actually not as cranky as i expected but my desire/ability to do a lot is much less. I am very stubborn and always try to push myself just a little more. I have chemo first thing tomorrow so will let you know ASAP. My onc says it is 'sound logic' so we will see. If it keeps some of the se at bay I am for it! I am doing TCx4.

    · Share on FacebookShare on Twitter
  • Deborahanne
    Deborahanne Member Posts: 181
    edited September 2013

    I'm now on Day 6 and it hasn't been too bad today. I've had some waves of nausea and drinking water seems to make it go away. I'm having aversions to certain foods and smells while having strong cravings for other foods. This evening I craved fried chicken, mashed potatoes and gravy, and green beans. I ended up compromising having rice instead of the potatoes and gravy. My dear husband went out and bought the food and it was so good!!! I was also feeling a little achy earlier and ibuprofen helped alievate that. I'm feeling really good right now.

    Here are a couple items that relate to other posts. Maybe they will be helpful.

    Tip for feeling better - it was suggested on this formum to drink lots of fluids and to get up and walk a little even when you don't feel like it. That has helped me.

    Decadron doses - my dose got messed up too because of MO's nurse - it's really frustrating. We truly already have enough to deal with, and having something like that go wrong just adds to the stress and confindence we have in the care we are given. Thankfully MO and the chemo nurse were excellent. My husband and I are now writing everything down and double checking things. I have a nursing background and my husband is a biologist. It seemed we actually got better care when it was obvious we writing things down.

    Haircutting - I cut my hair shorter the day after chemo and my husband had to shave around my neck since I cut the back that short. I've never had my hair that short before, and have been pleased that it's not that bad. I am planning to wear head scarves instead of wigs. I ordered caps to sleep in, to wear around the house and to wear under my scarves from headcovers.com. It's a great site that I highly recommend. I got my caps today and really like them. I got the three seam turban style. I read somewhere that someone cut their hair real short close to when the hair was to fall out and their head was very tender and painful as a result. I'd be interested in tips on how to prevent or minimize the head tenderness.

    IV access if you don't have a port - since being diagnosed with cancer I've been told my veins are poor. To help prevent problems I ended up drinking lots of water the day before chemo and all morning before the IV was started for chemo - the nurse had no trouble at all. I'm now certain all the other times there was trouble getting a vein was because I was not well hydrated.

    Communicating with the doctor - I agree completely with who advised to let your MO know if you are having any problems. MO has greatly emphazed this because he can precribe other meds if needed and he sincerely wants to do all he can to get me through this as comfortably as possible with minimal complications.

    Margetoday - your sugery and chemo dates are close to mine, however, we do have some differences in cancer and treatment. I can relate to some your symptoms, especially the nausea, acid reflux, and food aversions, but I'm doing better than you are. I hope you do much better soon. That's great how your husband came up with that concoction!

    · Share on FacebookShare on Twitter
  • Deborahanne
    Deborahanne Member Posts: 181
    edited September 2013

    Side note: I heard about this movie today and was really excited about it. "Decoding Annie Parker" is a film about the discovery of the gene that causes many breast and ovarian cancers. It's based on real people. google it for more information and for website with trailor.

    · Share on FacebookShare on Twitter
  • BabyRuth
    BabyRuth Member Posts: 264
    edited September 2013

    Today is the day.  I will be leaving at 9:00 for my "cocktail appointment".  I am not feeling too good from all the steroids I had to take last night and this morning.  Drinking water nonstop to get me ready. 

    Good luck to anyone else who is hitting the chemo bar with me today!

    · Share on FacebookShare on Twitter
  • lighthouselady
    lighthouselady Member Posts: 752
    edited September 2013

    I'm with you Babyruth!  Hitting the AC bar for tx #2 at 1:30 today!

    · Share on FacebookShare on Twitter
  • lovewins
    lovewins Member Posts: 881
    edited September 2013

    (((((BabyRuth))))))  I will keep you in my thoughts and prayers today while you get your healing cocktail.  I pray you have no SE and everything is smooth sailing from one cocktail to the next!  No hangovers hear!

    · Share on FacebookShare on Twitter
  • JellyK
    JellyK Member Posts: 150
    edited September 2013

    Good luck to BabyRuth & Lighthouselady on your cocktails today!  Lots and lots of water, walks if you can and stay out of the sun :-)

    I have a cold this morning, so annoying.  I have to call my pharmacist and see what cold meds I'm allowed to take with the concoction of crazy meds I'm already on.  I hate these first few days after treatment when I have to look at a chart to figure out what I'm supposed to take at any given moment, lol.  Luckily even though I feel like crap because of the cold, I'm still okay as far as nausea, so I'm going to hold onto that thought.  And I start my Neupogen tonight, so that should help me get over this cold too hopefully.

    · Share on FacebookShare on Twitter

Categories