Starting Chemo May 2008

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  • cbme123
    cbme123 Member Posts: 19
    edited May 2008

    good morning all!  Robin, I bought all of my head gear from a place called The Wig Shoppe.  It is a warm and fuzzy and intimate shop close to where I live.  Great energy there with a truly fabulous selection of wigs, turbans, hats, scarves, you name it.  Angels, I shaved my head last Monday so it has been a "cool" week as in chilly. :)  My kids have been calling me the Commando, I have been calling myself G I Jane, and my husbands now calls me the Convertible.  :)I also tell him we've gone from carpet to hardwood. :)  I wear wigs to work but they tend to become uncomfortable as the day wears on.  I find myself wearing scarves and turbans at home as I can hardly tell they are on and they do keep my head warm. Angels how are you feeling this second week out of chemo?  I found my worst days were the Sat, Sun, And Monday after the Thursday we got chemo.  Hope everyone has a good Monday!  Talk soon.  Carla

  • flyrzfan
    flyrzfan Member Posts: 557
    edited May 2008

    Adrienne ~ its the side effects mostly - especially the bone/muscle pain. Already have peripheral neuropathy in left arm and some days can barely handle that pain -and that is with the pain meds i am already on. That being said, after reading a few other posts about wbc dropping dangerously low after 1st tx, I decided to deal with whatever Neulasta brings me. I am highly susceptible to infection and get them on average 6x's a year - for everything imaginable - so, Neulasta it is. Thanks for your input...it's appreciated...

  • KristyAnn
    KristyAnn Member Posts: 793
    edited May 2008

    Hi Everyone,

    Ive been out a few days too dealing with the post chemo "crud" feeling. I got Neulasta this time around and have had achy legs for 3 days- I think I may push myself to walk and see if that helps. I normally walk every day but the aches have kept me kind of quiet the last 3 days. I did not get Neulasta after my first chemo treatment and ended up with a 3 day inpatient hospital admission and a white count of 216 so I will get Neulasta the remaining treatments.

    I hunted and hunted for any alternative to Neulasta and neupogen(daily) is the only one- I would actually prefer that but my doc prefers Neulasta. There is no food or other therapy to help. My onc did say walking would help with the pain since endorphins would help push the little neutrophils out of the bone marrow.

    I am making an iron rish veggie soup tonight- I also crashed on red cells the first treatment and I am trying to avoid having to also take Procrit again (I got it in the hospital after the first crash).

    My wig is fun but today will be around 90 in East Texas- giving serious consideration to going commando at least some places- the wig and hats are just plain HOT sometimes!

    How long does the Neulasta pain last for those of you who have been through this before? I keep hoping for a decent week or two in between treatments!

    Kristy

  • gogators
    gogators Member Posts: 39
    edited May 2008

    Hi all!  Just an update to my post on Sat night about my lumpectomy incision opening back up a little bit.  My surgeon was oot on sat, so I talked with another surgeon who said it was fine as long as the drainage did not have an odor, was clear and there was no redness, tenderness or fever.  So, since I don't know this guy, I called my surgeon this morning who confirmed.  If there is fluid that needs to get out, they would rather it happen than not.  So, I just have to keep an eye on it. 

    Now, I called the onc and am waiting for a call back to see if this will postpone the 1st tx that is supposed to take place this Thursday.  I hope not, but if it does then I guess it was meant to be...

    Tina

  • rock
    rock Member Posts: 1,486
    edited May 2008

    Tina, I really appreciate the update. (I've been thinking about you. And have eaten another 2 bowls of popcorn.)  Take good care.

  • rock
    rock Member Posts: 1,486
    edited May 2008

    QUESTION:  When you go in for chemo and discover your WBCs, neutrophils, etc. are really low, do you have any inkling before you go that this might be the case?

    My doctor had decided to put me on Neulasta before they even did the bloodwork.  But when I went in for chemo #1, they told me that my bloodwork was not great (e.g., my WBCs were already "low normal").  

    I feel really good. But in the back of my mind I'm wondering if I'm going to go in there on Wednesday and find out that I'm actually not doing as well as I feel.  

    Any thoughts?  

  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    Rock - my Onc also planned in advance to do the Neulasta the day after each treatment.  I had a follow up blood test last Wednesday to check my numbers (I week after first treatment).  I'm not sure what most doctors do, but I'm glad mine did.  I am one who likes to see trends, etc.

    Anyway, I was actually feeling fabulous at the time of my follow up blood work, no indications of low count or anything.  I have a copy of my lab work, so I'll give you the numbers I have.

    wbc normal range is 4.1 - 10.9

    Mine before chemo - 4.9

    7 days after chemo - 3.0

    If I hadn't had the Neulasta, I have no idea how low it would've gotten.  The nurse was very pleased with the post chemo #'s.

    Neutrophil normal range is 2.0 - 7.8

    Mine before chemo - 3.4

    7 days after chemo - 1.9

    I hope this helps.

    ~Adrienne

  • rock
    rock Member Posts: 1,486
    edited May 2008

    This helps so very, very much.  (Our pre-chemo results are quite similar.) Thank you.

  • KristyAnn
    KristyAnn Member Posts: 793
    edited May 2008

    I felt great when I went in for my herceptin treatment a week after chemo- my neutrophils were 1.1 which put me into precaution mode right then. Two days later I started running a low fever and by the end of that day was in the hospital - I had some fatigue but it was more likely from the low red blood count that I had at the same time- the little white guys dont make you feel bad necessarily.

    Kristy

  • rock
    rock Member Posts: 1,486
    edited May 2008

    Kristy,  Rats. I was hoping feeling well=good WBC!

    I don't want to make you revisit a bad experience but . . . did they give you any sort of advice about the sort of measures you should be taking to strengthen your immune system/reduce risk of infection? I am trying to strike a balance between being careful without making myself a crazy lady (after all, I do have to take NYC public transit!). 

  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited May 2008

    Happy Monday everyone,

    Carla in answer to your question, my worst days (which were manageable ) were much like you.. the Sat. and Sunday was when I felt the yukkiest. 

    This past week I almost feel normal if thats possible and there are actually times when I'm thinking about something else other than chemo and how i'm feeling. I was out poking around in the garden (with out gloves cause it didn't cross my mind....chemo brain maybe.. i don't know if that is applicable this early on in treatment but i'll use it anyway!) and of course I got a small scratch and panic sets in ...oh no infection and so on.  So i have to remember to rethink everything i do and apply it to my new normal.

    Collector ...good luck to you today with your tx, let us know how you make out ! 

    Hope everyone has a SE free day !Innocent

  • beachmom13
    beachmom13 Member Posts: 313
    edited May 2008

    Good morning all.  I went for blood work 1 week after my first tx and my wbc was .08.  I felt terrific.  The nurse even commented that I looked way to good for counts as low as they were.  Nuelasta was given and I now receive it the day after each tx.  The first time I had a temp spike on Frid. after Wed. neulasta. and was achy. The dr. said I probably had an infection starting, but the antiboitics stopped it.  This time I was acky Sun. after Thur. neu. but feel fine today.

  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    Rock - You may already know this, but I found pen sized spray hand sanitizers that fit easily in any purse or pocket.  I found them in the health and beauty section at Walmart, where they sell the small/sample sizes of toothpaste, shampoos, etc.  My doctors office also gave me one last week when I went in for my bloodwork follow up.  Its come in handy a couple of times. 

    I've been told there isn't much else you can do to help your immune system, except to avoid risky situations (like large crowds).  Kinda hard on public transportation, eh?

    ~Adrienne

  • otter
    otter Member Posts: 6,099
    edited May 2008

    Rock, I agree with Adrienne.  There isn't much you can do to "help" those neutrophils at a time of need.  The only thing that will make them come screaming out of that bone marrow is a pulse of their favorite "hormone" (G-CSF; or a shot of our favorite genetically engineered version, either Neulasta or Neupogen).

    Until that stimulus happens and they can respond, the best we can do is try not to place too many demands on the mature neutrophils we already have in the blood.  They don't live very long anyway (a matter of a week or so, it seems), and when the call comes for them to migrate into a site of infection to fight off the bad guys, their lifespan becomes mere hours.  So, if chemo has suppressed our bone marrow and we aren't producing new neutrophils to replace the ones being killed in battle, well, we're screwed.

    Neulasta and Neupogen really are keeping a lot of us out of the hospital.  Most likely, unless we're running a fever or feel "sick", we won't even know when our neutrophil counts are down. Fortunately, the low point only lasts for a couple of days as long as we've been given bone marrow support via Neulasta or Neupogen.

    RBC's are a whole different matter.  Neulasta does nothing to help them mature and be released from the bone marrow.  RBC's need to hear a signal from their own "hormone", erythropoietin (commercial versions are Epogen, Procrit, and Aranesp). You can feel weak and tired, and look pale, as a result of too few RBC's, but not necessarily.  Most people can tolerate a bit of a drop in RBC's and/or hemoglobin before they crash.  So, my onco proposed that even if my hemoglobin drops a bit more than it has, we just tough it out rather than use Procrit/Aranesp to boost it back up.  It gives me yet another excuse to be lazy.

    otter 

  • rock
    rock Member Posts: 1,486
    edited May 2008

    Collector -- how is it going today?  Were there any "drink specials"? 

    Adrienne (my partner in chemo): If I could have a child (and wanted to), I think I might name her "Purell." I love the hand sanitizers. But I will keep my eyes out for the pen-sized ones!

    "There isn't much else you can do . . . " Oddly, this makes me feel better. I do not want to live the equivalent of Robbie Benson in "The Boy in the Bubble."

    The weekend before chemo #3 there is a huge memorial service I want to go to (the original bald-rocker, Dean Johnson of the Velvet Mafia) and a 50th birthday/fundraiser for one of my heroes (I'm also on the board of her organization).  Do you folks think it is completely out of the question for me to go to one or both of these events?   I bet it's just one of those "wait and see what your WBCs are doing..." deals, isn't it.  I am curious what you think, though.  I think the restrictions on my activity and time with people is going to be a very difficult SE for me.

  • LorenaB
    LorenaB Member Posts: 937
    edited May 2008

    I don't know if I was just being foolhardy, but I didn't restrict my activities at all during chemo.  I went to the movies once -- a kid movie, no less, so I'm sure the place was filled with runny noses -- and pretty much did what I always do on the days I felt up to it.  I don't take public transportation on a regular basis, but I did take the train and subway into Boston on the morning of chemo.  Of course I stayed away from any kids who had been diagnosed with strep or were actively puking, but besides that, I just washed my hands a lot and went on with life.  When I asked my onc about food restrictions, she said that this is more relevant for people who do a longer course of intensive chemo over many months, because their immune systems become really compromised (I was just doing 4 sessions of A/C).  She said I should follow the same guidelines that pregnant women do -- no sushi or undercooked meats, no soft cheeses -- but raw fruits and veggies were fine.  So I've been eating salad all along.  The Neulasta seriously boosted my WBC -- it was above normal the last two times -- so I guess it worked for me.

    I'm not advising that everyone do what I did -- maybe my onco is particularly liberal, or maybe I just got lucky, or maybe 7 years as a parent of a kid who has been in daycare since he was 5 months old has given my immune system a natural boost?  But I wouldn't worry about a couple of public events if you really want to go.  You could be like my mom's crazy cousin, who is also in the middle of chemo and showed up to another cousin's engagement party with a spray bottle of Lysol.  No, just kidding, please don't do that!  If I were you, I would go -- and if the person sitting next to me started recounting her terrible bout with the stomach flu, I'd move to a different seat.

    JMHO.

  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    I agree with Lauren - GO and have a great time!  Just be aware of potential germ dangers and certainly rely on that Purell, if need be.  If anybody coughs on you...smack em with a smelly trout Wink.

    LOL..about the Lysol can...a little too close to home for me.  Last week, my 18 year old DD woke us up not feeling well, light headed, pain in her side.  So I have DH take her to ER (she's never sick).  After 8 hours in the ER....grrrrr.....she has the all clear.  She is fine maybe just coming down with something as her wbc was just a tad elevated.  They get home in the morning I say to my DD "I love you, kiddo.  So don't be offended if I'm following you around the house with a spray can of Lysol.  Did I say I love you?"

    Oh, and I was told the same thing about fresh fruits and veggies.  If my wbc had been too low, it would've been recommended to avoid them but since the numbers were good .... enjoy.  I do run my packaged salads through the salad spinner...mostly because we eat alot of salad.

  • Jule
    Jule Member Posts: 250
    edited May 2008

    Hi. I start chemo on Thursday.  I am actually doing chemo first before surgery due to some research that my onc found. I am having TAC for 6 sessions - once every 3 weeks. My onc already assured me that hair loss would be imminent! I also have a prescription for anti-nausea meds the day before, day of, and day after chemo besides the shot planned for the day after. Anything I should be aware or or know about. She told me that I would definitely not be feeling better until the MOnday after. I am planning on working Friday, if I can, but I wanted to know if this was even realistic!?

    Thanks for any advice.

    Julie 

  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    Welcome Julie.

    On page 4 of this thread, rockthebald has put together a fabulous list (compiled in two posts) of things that might help you prepare for treatment.  I hope this helps you in your preparation.

    My treatment is dose dense A/C X 4, followed by Taxol X 4.  So far, I've only had one treatment (treatment 2 is this Wednesday).  For me, day 3 and 4 ... I was exhausted and just wanted to sleep.  After that, I've felt pretty darn good. 

    I would recommend that you drink alot of water from the day before treatment and beyond.  This will help flush your system. 

    Good luck on Thursday.

    ~Adrienne

  • MsKarin
    MsKarin Member Posts: 647
    edited May 2008

    drcrisc

    I also had a lumpectomy on March 21 and then a re-excision and SNB on May 2. It is now 17 days since 2nd surgery. My dented boob is still swallon, brusied and bigger then normal boob. Did you have any problems with second surgery? How long before swelling went away and you could tell it was the dented Boob? I am suppose to start TC next week 5/28 but think I want to heal better before they inject me with drugs that will slow down healing. See surgeon on Thursday for 2nd follow up, will ask him what he thinks. If he gives me the thumbs up, otter can add me to the list for 4 TC every 21 starting on the 28th.

    Karin

  • drcrisc
    drcrisc Member Posts: 836
    edited May 2008

    Hi all,

    Just checking in...still no word from Stanford today.  Grrrr....Yell  What could they possibly be doing up there that is taking so long?! 

    Karin - the lumpectomy was a breeze the re-excision and SNB...not so much.  I had almost no pain with the lumpectomy which was good, because if it had hurt like the second surgery, I'm not sure that would have happened.  I would say give it at least another week and you should feel much better.  It took at least 3 weeks before I could wear a regular bra somewhat comfortably.  The SNB incision was much more sensitive than the re-excision and is right in that awkward place for a bra.  I don't notice the swelling anymore.  When I saw my bs last week for f/u, he said the SNB area was still slightly swollen, so I guess it takes at least 6-7 weeks for the swelling to really go down which is where I am right now.  He also said the "dent" will fill in over time and it is better than it was.  I can't feel the "hole" as much any more.  See what your surgeon says.  A week from now could make a big difference. 

    Just call me Impatient...grrrr...

  • rock
    rock Member Posts: 1,486
    edited May 2008
    Cristine -- Nothing to offer except to join you in an empathetic Grrrrrrrrrrr.  (Can you imagine what it would be like if every woman who was losing patience waiting for results/insurance reiumbursements/surgery/chemo showed up en masse somewhere and growled? If I'm ever reincarnated as a performance artist . . . )
  • flyrzfan
    flyrzfan Member Posts: 557
    edited May 2008

    hi ladies...i hope everyone has great SE free day....I am starting my day with a fake it until you make it attitude so please, if ur day has started out yucky too - join me! my mantra now is - "i have no choice but to keep going or quit and let the cancer kill me" - I won't be in the May chemo class afterall - my oncono called yesterday and informed me my blood work shows i am anemic and my liver levels are "high" so i have to back off chemo until i get an mri and work on the anemia...wth?  oh well, my best wishes to all of u coping with it this month...bonnie

  • nmjohn
    nmjohn Member Posts: 7
    edited May 2008

    Hi everyone,

    Well it's Tuesday after my 1st Friday treatment T/C.  I also had a neulasta shot yesterday.  I've had little or no s/e's so far.  I've been able to work and carry on with my normal crazy schedule.

    The only thing I have noticed is restless sleep.  I doze off regularly, but it's fitful - the only way I can describe it.  Last night I had sort of creepy crawly feelings in my legs.  I got up and moved around a bit and that seemed to help.  I've never had that before, so I'm just assuming it's related to the chemo.  So, all in all, things have been relatively uneventful.   I keep waiting for the ball to drop and I'm sure it will, but for now I'll thankfully take this.

    I'm wishing for minimal s/e's for all of us.  Sending prayers and good thoughts to each of you.

  • otter
    otter Member Posts: 6,099
    edited May 2008

    nmjohn, I'll bet that's the steroids affecting you.  I get really, really mild restless leg syndrome on occasion.  Each time I have a TC infusion and start on the Decadron, it gets worse; but it only seems to last for 2 or 3 days.  I hope that's all it is for you (although that doesn't seem so minor, does it?).  You are so fortunate to have "little or no SE's" from TC.

    Sounds like many of you are just waiting for something to happen.  That's the absolute pits.  This isn't nearly so bad, once you get started and can see an ending (she says as she crawls back under the blanket and wonders if anything will taste OK for supper tonight...).  [Edited to change "summer tonight" to "supper tonight".  Good grief!]

    Hugs,

    otter 

  • collector
    collector Member Posts: 193
    edited May 2008

    My first chemo went well except for being quite cold in the treatment room.  I had 2 blankets on the entire time and next time I will definitely take some long warm socks!  I slept well and have felt OK today.  Went in for the Neulasta shot and now want to relax a bit.  I hope to go to my needlepoint clinic tomorrow.  Not too many people will be there but it's a very enclosed, stuffy room so at the first sneeze, I'll leave.  For months I've been looking forward to a special needlepoint class that takes place for 4 days next week.  Those will be Days 11-14 for me and I sure hope I can make it.  Trying to avoid germy groups until then. 

  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited May 2008

    Collector, glad to hear you are doing ok so far. it's great you have you have your needle point class to look forward to next week , it helps to have distractions!

    I'm off on a 4 hour road trip in about half /hour for my rad consult, maybe i'll get good news and wont have to do it, but i won't be surprised if i have to add that to the list of "things to do this year". My sister inlaw is going with me so maybe we can make it a girls shopping trip!

    Hope everyone is doing well and those going into tx good luck ! Innocent

  • rock
    rock Member Posts: 1,486
    edited May 2008

    Congrats, collector on Chemo #1.  Bravo!  clapclapclapclapclapclap.

    Familyroks, Ready to grab hands and jump in the pool tomorrow and have drinks at the chemo cocktail bar?

    Angelsaboveus:  Up until about 20 seconds ago, I thought you had a Greek login:, i.e., "Angel Sub oh vee uss."    

    Otter:   Here, I hope, is a link for Summer Express: 101 Simple Meals Ready in 10 Minutes or Less

    http://www.nytimes.com/2007/07/18/dining/18mini.html?_r=1&scp=10&sq=100+recipes&st=nyt&oref=slogin 

  • otter
    otter Member Posts: 6,099
    edited May 2008

    rockthebald, GOT IT!  I printed them out, and I'm getting hungry already.  Some of them are a bit over-the-top for my chemo-afflicted shopping and cooking skills:

    "Boil a lobster. Serve with lemon or melted butter."

    Yeah, I wish.  Maybe next week....

    Anyway, thanks for the great ideas.

    otter 

  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    rockthebald - I'm ready to dive in.  I hope we do as well as we did for treatment #1!

    Collector - glad to hear you are doing well.

    Otter - I hope you were able to climb out from under your blanket long enough to have a tasty meal.

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