Starting Chemo October 2009

Options
12357…113

Comments

  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009
    Hi Mary, the only thought I had on your decision was that my onc  was able to pull up a program and u can type in all your info and it will spit out chance of recurrence with and w/o chemo. With one positive node-to me that still spells the CA has travelled and a little chemo now may be worth a lot less worry later. The numbers were compelling for me and was advised to do it but am just doing TC and skipping the andromyacin (the more toxic stuff) as it does not increase odds for non-recurrence much. Good luck w/ whatever you decide. Valerie
    · Share on FacebookShare on Twitter
  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi Girls!

    Well, I took my latest round of questions to the onc.  Good Answers:  Yes, I can keep my nails on (that surprised me, but I'll take it) and Yes, I can go the wine tasting Sunday night!  But now I'm thinking I may be too nervous to go, and I want to make sure I drink plenty of water . . . and probably not wine.

    He said I can keep taking my Omega 3 and Calcium, but says I should quit the multi vitamin and the NAC.  He doesn't want me to do antioxidant loading.  Now, I read those studies that say maybe they protect the cancer cells as well, but I would think a simple multi would be ok?  Hmmmm . . .  I take Armour Thyroid everyday, and he said that would still be ok as well.  He gave me a prescription for compezine.  I do still have my phenergan, but I guess I will save that for when I'm nauseous and tired because it makes me sleepy!

    No to the hyperbaric chamber.  I still have 2 more sessions that I have paid for, but I guess they will have to wait until my implant exchange surgery.  And he still said NO to the botox.  Frustrating, but not an immediate issue, so I will feel free to bring it up again later. 

    Then I went to get my blood drawn.  They gave me a poor beginner girl.  She hit my arm - no go.  She hit my wrist - no go.  This with moving and digging the needle around and after a warm compress.  Then the pro came in.  She got my arm, but the vein blew after the first vial.  Finally, I just told her to try my left arm.  I know I'm supposed to protect it, but they only took out 2 nodes!  Well, it spouted like Old Faithful, and I was done in 1 minute.  Both kept asking if I was going to get a port.  Not unless I absolutely have to!  They can infuse me through my feet if necessary and I will just tell people I am an IV drug user.  HAHA

    Oh, I made some comment to onc about my softball team and that we had a game tonight.  He encouraged my physical activity.  I laughed because there's no way I'm playing while I have these kevlar foobs!  I'm just going for the beer!  Besides I read another study (and in Dr. Susan Love's book) that the increased risk that comes from alcohol can be offset by folic acid.  So, Hello Green Leafies for dinner!!

    I ordered a stroller for Mr. Fabio, so we can go on walks together.  He likes to walk, but only for about 50 yards.  Then he likes to be carried.  Even on my best days I do not walk with a 30 lb weight in my arms, so he'd better like his stroller.  Can't take the mastiff because she hyperextended my elbow a few years ago and I do not want to repeat the experience.

    Valerie - I asked my onc why I wasn't getting andromyacin as well, and he said the same thing to me.  Plus, I will be on tamoxifen after.  He didn't think I needed to be on the bisphosphonates trial right now, but will give it more thought.  He is pretty conservative.

    Have a GREAT Friday night!

    L 

    · Share on FacebookShare on Twitter
  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Hi Valerie. The program your doctor used is probably Adjuvant! Online. Using that, if I'm reading it correctly, my relapse rate (I'm guessing this is the same as recurrence rate) in 10 years would be 36% if I had no therapy. My risk of dying of cancer in 10 years would be 16.6% without therapy. The greatest benefit is seen with 3rd Gen chemo regimens combined with hormonal therapy. But all of the predictions are based on on tumor size and node involvement.

    According to the Oncotype test the tumor is not as agressive as I thought. My Oncotype score of 18 puts my recurrence risk at 12%. What I can't determine is how much my recurrence risk would be reduced by doing chemo. I've made an appt to see another oncologist next week for yet another opinion.

    · Share on FacebookShare on Twitter
  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009

    U r exactly right - that is the website that he used. I also know that many folks get a second and third opinion on chemo. It is such a daunting undertaking - who could blame us? If I had only talked to my first surgeon I would have been discouraged and had a mastectomy (it turned out not to be necessary). I so much more feel comfortable and trusting of the team I have now - sometimes I think thats half the battle. Takes some of the struggle out which helps to reduce the suffering. Be well. Valerie

    · Share on FacebookShare on Twitter
  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Jaclyn,  Thank you SO MUCH for posting about your day!  I'm like you - I want to know what I'm getting into!  I just hope my first treatment goes as well.  Your husband sounds like a wonderful man - how lucky you are!  Good luck with the Neulasta shot tomorrow.

    Can somebody tell me about the MUGA scan?  I've been reading about it, but my onc never mentioned it.  Maybe he'll talk about it when I see him this week.

    Peace to all... 

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear TXStarDust,

    The MUGA scan measures the efficiency of your heart's left  ventricle for its pumping. They give you a radioisotope shot. Then have you wait 20 minutes. Then another shot. Then you lie down on the platform. The technician adjusts the machine and takes continuous pictures for about 10 minutes. Then they look at the picture that shows the ventricle inflated and another deflated. The technician circles the ventricle in the pictures and the machine spits out a number. They sometimes tell you the number right away if you ask. Between 50 and 75 is considered normal.

    An EKG is simpler, quicker and less expensive and some doctors will order EKG. But MUGA is considered highly reliable, consistent and more predictive than an EKG.

    · Share on FacebookShare on Twitter
  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Shelby, I had a MUGA scan in anticipation of going on CAF or FEC. I was concerned that my score was low-normal at 51% but onc told me not to be concerned as that was still in the normal range.

    There are two ways of giving you the radioistopes -- in vivo or in vitro. Onty described the in vivo method above. The in vitro method is to take a blood sample from patient, then mix that with the radioactive substance, then inject that back into the patient again. My MUGA used the latter procedure.

    The test is quick and painless and the results are immediate. The technician showed me the results onscreen immediately after the test.

    Jaclyn, thank you for the detailed account of your first treatment. Knowing what to expect helps enormously in lessening the anxiety. 

    · Share on FacebookShare on Twitter
  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Thanks, ladies!  What would I do without you?  I wonder if he'll order this scan - I had an EKG done before my first surgery, and maybe because I'm younger, he figures he doesn't need it?  

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Mary,

    Now that you mention it, my radio isotope shot for the MUGA was done the same way as you described.

    · Share on FacebookShare on Twitter
  • KLee
    KLee Member Posts: 60
    edited October 2009

    Hi everyone,

    I just started my first round of Taxotere yesterday ( 10/2/09 ). So far, so good. We will see how this goes as the days go by. I'm always exhausted, can't eat, am constipated, so this I am all used to. I'm just hoping I won't be getting much bone pain. Really hoping this Taxotere is going to kick my cancer's butt!

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Hey October girls!

    I posted yesterday about how uneventful, and actually positive, my first AC treatment went for me.  I was not so deluded as to think the other shoe would not drop when I wrote it, I was merely enjoying "the now" of feeling good.

    So, here I was feeling so happy that my first chemo treatment was uneventful, UNITL 6 pm when I vomited 4 times in less than 30 minutes.  I meditated and used visualization to relax and after 20 minutes took a compazine.  I fell asleep until 7:30 when I woke up with an absolutely horrific migrane, 3 more vomits and too too many loose BM's.  Mainly the migrane was the worse part and cool compresses and complete darkness did nothing to aleviate it.  No fever, no body aches, just a little light headedness. I called my oncologist who called in prescriptions. One med was Ativan that allowed me to calm down and sleep.  I got up only once and it was honestly the best sleep I had since before the cancer diagnosis back in August.   So after some great sleep, today I feel so much better. Did I mention that my hubby-love slept next to me on the other side of the couch all night?  I slept in the living room on the corner recliner of an L shape couch, and when I awoke at 3am he jumped up from the other side of the L and escorted me to the bathroom.  What a sweetie. I am very fortunate. I must say I was quite startled tough because I did not expect it and had no idea even where I was since I never sleep in the living room.  So with the sleep behind me, I took the pricy meds I had picked up - 2 anti-nausea and 1 steriod with a breakfast of toast, 1/2 banana and tea.  Then I just had some chicken soup at noon.  YEAH!!!  All is well and it is nearly 3 pm.  My husband ran out to the pharmacy to get me otc Claritan and Aleve.  Apparently I will need to take them before the Neulasta shot I get tomorrow morning at 8am.  The Neulasta costs - ready for this - $6000-9000 per shot and I need to get it after each chemo session.  Thank heavens for insurance - my total out of pocket has already been met at $6000 annual so all those years of paying high premiums are seeing use.   

    My oncologist called me this morning to check on me.  WOW!  When did that happen - it is like the "old days" when doctors actually called the patients and provided follow up personal care.  She is originally from Dana-Farber and is an amazing woman as well as doctor!  I again have found the kindness and compassion of folks tending to me to be remarkable!

    So, while the war against this cancer continues - the good news is that I did not have allergic reactions to any of the meds given to me, I am one battle/treatment down, and I feel that the fight is on to rid my body of the bad little cancer bugs!  

    Have a glorious Saturday and I generally check in about this time of day so I will look forward to hearing about all of your progress! 

    -Jaclyn

    · Share on FacebookShare on Twitter
  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Jaclyn, oh, how awful your evening was!  I'm thrilled that you are feeling better today.  And how amazing that your doc called you...on a Saturday!!!  WOW.  Let's hope next time is better for you.

    Welcome, KLee!  Glad to meet you.

    Peace to all... 

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Jaclyn,

    So sorry to hear that your body could not hold it down and you had to vomit. Hope you feel better now.

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    I just looked up my medical bills. Totally stunned to see that the one tiny shot of Neulasta was billed to my insurance @ $3900. From what's been submitted so far, it is the single most expensive drug in the treatment.

    · Share on FacebookShare on Twitter
  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi Everyone - 

    Just got back from Walgreens and purchased tons of stuff I may or may not need for the start of chemo (on Monday)!!  Getting nervous.

    I really want to be in that bisphosphonates trial, but my onc said no because it is not the "standard of care." Really?  I guess that's why they call it a TRIAL (ah read the sarcasm here).  I feel like crossing the border and getting what I want in Mexico.  But I won't.  I can be really feisty here at home, but where was my determination when talking to my doctor?  HA!  Nowhere to be found.  He just makes everything sound so . . . reasonable.  I'm going to ask him again.  Maybe I will wear him down.  Maybe I will just tell him I am worried about brittle bones and he will prescribe it for that.  Fat chance since I work out and have really good bone density.

    And I'm sure my anxiety is being compounded by the fact that my still-producing-estrogen body is planning to start its monthly cycle on Monday!  Yay!  Chemo and Cramps!  I started my last period 3 days after my mastectomy, so maybe this is just my luck?  Well, maybe this will be my last monthly visitor . . . to be replaced by hot flashes, mood swings, etc.  

    Potential Chemo Party tonight with friends.  Hubby is out of town, so maybe we'll get a little rowdy!  Although I sense from my little pity party above that things will not get too out of hand.

    Onty - I have been looking at what has been billed to my insurance and the costs are insane!  I have BCBS and they send me statements of what has been submitted.  There was one procedure that the hospital billed at about $4500.  The "allowed amount" (what the hospital has contractually agreed to receive) from BCBS was $700.  How do you bill $4500 and accept $700?What accounts for the difference?  Would they accept $700 from someone who didn't have insurance?  Yeah, right.

    Jaclyn - I'm glad you feel better today.  I'm right on your heels, so I am looking forward to your post tomorrow!

    Laura 

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear AZDiva,

    Like you I find the explanation of benefits a joke now. I have the same question about what doctors charge uninsured patients? During my diagnosis I visited a breast surgeon for a second opinion. When we reached there we learned that she did not take my insurance. We had waited 3 weeks for that consult and got panicky on hearing that. DH asked the office girl what the doctor would charge for our consult. We were told $400. DH then asked what the doctor gets from insurance and the office girl made up all kinds of excuses not to share that information :) We know now that insurances pay surgeons no more than $100 for a consult.

    · Share on FacebookShare on Twitter
  • Sido
    Sido Member Posts: 234
    edited October 2009

    Jaclyn,  I'm sorry you had such a hard night.  Hopefully they will be able to amelierate your side effects better from here on out.

    Laura, I started my period the day of my biopsy and again a week after my lumpectomy.  I've always had nasty periods so the idea of early menopause didn't sound too bad (except for dry skin, weight gain, hot flashes...).  But being triple negative means no hormone therapy, but chemo might give me a brief reprieve.  

    My DH and I had dinner at a friend's house this evening and I slipped on their back stairs and scraped by surgical arm.  I'm petrified of lymphedema, even though they only took 5 nodes.  It's going to be bad enough being scarred and bald.  I do not want a swollen arm on top of it all.  The scrape is nasty so Todd (my DH) put some salve on it and covered it with gauze for tonight.  I hope it is enough.  I've been having pain down the back of my arm to my middle finger as it is.  I feel like such a wimp sometimes...

    Sido

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Sido,

    You will be fine. A scrape should not cause LE.

    · Share on FacebookShare on Twitter
  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    i would like to be in this group. i started my first chemo in sept 24. my next one is oct 8.im on AC dose dense for 4 tx.

    · Share on FacebookShare on Twitter
  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Welcome Newtonville. There are a few other women on her on dose dense AC too, though I think all of the others are following it with Taxotere or Taxol.

    Those billed costs that you've all mentioned up above are downright scary. Have any of you calculated what the total cost for your chemotherapy will be? When requesting that my insurance company pay for the Oncotype test, my doc pointed out that the $4,000 for the test might mean that I would skip chemo and it would thus be worthwhile for them. Nevertheless, the insurance company has so far refused to pay for it. 

    · Share on FacebookShare on Twitter
  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009
    Hey newtonville, I am from Hubbardston Ma past LeominsterFitchburg on rt 2 and am also going for chemo on the 8th. Going to the Gilette Ctr in Boston. Have to have the port placed first then mtg w/ onc and then first infusion at 2p. I think i am skipping the A and just doing the TC piece. How is it going? Good luck.Valerie
    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear NewtonVille,

    I also started on Sep/28 and am "cheating" by being here too :)

    · Share on FacebookShare on Twitter
  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Hello October Ladies (and welcome late September Ladies too!)

    I'm so glad that everyone is sharing EVERYTHING about their chemo and BC experiences.  It sure makes it less daunting for me and helps us all to prepare mentally for what's ahead.

    I have been waiting for what seems like eternity (really only 4 weeks) to get the call for chemo to start. Last week I had a several stressful calls trying to figure out when I would be starting and on Wed I had an unexpected call to start on Thursday that I had to say No to.

    But I'm happy to report (yes happy is the right word) that I received another call on Friday and I'll be starting my chemo tomorrow (Mon Oct 5) afternoon.  Of course I said YES!! 

    I'm a little nervous and worried about how well I'll sleep tonight and how my viens will hold up.  But I'm trying to be strong and keep my mind on the goal - after tomorrow I will be 1/6 of the way done!

    I see that I am in good company and that there are others on here that are starting this week or going for their second treatments this week.

    That means that there will be a few of us packing our chemo bags!

    I'm going to pack my bag tonight - I've got my Kytril, water, snacks, magazines, book, reading glasses, iPod, lip balm, squirt bottle (for nether regions), and blanket.

    Anything else?  Is there anything that I've left off my list that you felt was absolutely necessary?

    Azdiva what all are you packing in your bag to take with you to chemo tomorrow? 

    Thanks so much for all the help and big hugs to everyone!

    Marie

    · Share on FacebookShare on Twitter
  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hey Marie!

    Looks like we will be on the same schedule!  I am bringing my laptop tomorrow because they have wi-fi in the chemo lounge.  If you bring one, we can compare notes during treatment!  HAHA

    I am bringing a blanket, neck pillow and thick socks.  They said it can get cold because the room is cold and the iv is cold.  Plus, I live in AZ.  Anything below 80 degrees requires a sweater.  I am going to wear a comfortable track suit.

    Since I am bringing my computer, I will be able to watch movies.  I am also bringing my ipod and a new book.  Reading glasses and lip balm as well.  That should cover the "activities" portion of the show.

    I am also bringing soft kleenex, Smart Water (the kind with electrolytes in it), a few Pedialyte popsicles (I heard this helps prevent mouth sores, but I'm not sure the TC combo even causes them), a few protein bars, a few yogurts, and some lo-cal Vitamin Water (kind of like Gatorade).  I don't know why I'm bringing so much food, but I guess its better to be safe!  My sister is coming with me because DH may have to leave town again.   

    What is Kytril?  I hadn't thought about bringing the squirt bottle.  Will irritation start that quickly?  Maybe I will take an AZO tab before I go.  I guess I will throw some moist wipes into the mix.  Can't hurt!  I may also bring a lap desk in case I feel like writing or working on the computer.  

    If I bring anymore than above, they may think I'm moving in!!  The nurse told me to expect about 4 hours tomorrow.  They will do everything slow because it is the first time.  

    A good friend took me and the kids out this morning to do a photo shoot.  We all posed for the final pictures of the current incarnation of my hair!!  She wants to do a wig shoot later on in the process.  We all had fun, and I think I really needed it! I am going to go to the wine tasting tonight.  My last hurrah for awhile!

    Still nervous about the chemo, but I am now, in a weird way, looking forward to it! Maybe I'm starting to get my steroid rush!! (8 mg dexamethasone first thing this morning and 8 more tonight!)

    Good luck tomorrow!  You will do great!

    Laura 

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Hi friends and welcome to the new girls/friends  :)

    It is a good day!  I am now only on day 3 after my dose dense AC, but today am so happy to report that I have no nausea, a great appetite and no unexpected nor new se's. 

    I had the Neulasta shot this morning (Sunday) at 8 am.  I simply walked into the facility (same as where I get the chemo), signed my name, waited approx. 5 minutes as a few other people were there before me, and the shot itself was administered to my right arm (the good one not subjected to node surgery) - no pain except a tiny burn.  I came home, took a 3 mile walk with my hubby (albeit slower than our normal), prepared a pot roast, did two loads of laundry, had lunch and CRASHED.  Okay, I deserved the 30 minute nap after all of the activity.  I so far feel fine.  I did, upon doctor's orders, take a Claritan 1 hr before the shot, together with my meds of Emend, Decadron and Anzamet.  I took a naproxen (Aleve) about 1/2 hour before the shot.  I also had a spoon of miralax (fiber stool softener) in prune juice but really no need as thankfully the "plumbing" seems to have evened out since Friday night and I am "normal" yesterday and today!

    So, after my nap, I feel encouraged and slightly invigorated.  I did take an Ativan last night at bedtime as per doctor's orders and again had a great nights sleep.  I seem to  be experiencing a bit of, there is no ladylike way to say, belching.  This has been since the 1st day so I cannot blame it on food choice nor the shot;  but it is not too terrible and if that is all I have to contend with today - YEAH!  Also no surprise that I am mildly fatiqued as I did push myself a bit today with the walk;  however I am very active and typically run the 3 mile route, plus lift weights and golf 3-4 days a week.  As my husband and sons (ages 27, 23) often remind me, I did just have four major surgeries in one month so "superwoman temporarily has to stay in the building" as opposed to "has left the building".  My body seems to get it but my stubborn mind, not so much so!  I am drinking lots of water, mint green tea (warm, not hot) and ginger ale. Fluids, fluids, fluids!

    So my dear friends, the waiting on the efects of the AC and also the Neulasta shot was once again the worse part and so far so good.  Of course as I did on day 1 - I realize that I am enjoying "the now" because I have heard that many sisters have experienced their worse se's on days 4-6 once the steriods wear off.  Also, it is too early to tell on the se from Neulasta.  But, I will rock the cazbah so to say and enjoy my Sunday afternoon.  Wishes of the same to you and gentle hugs all around.

    -Jaclyn

    · Share on FacebookShare on Twitter
  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Oh Marie, I almost forgot!

    DON'T FORGET TO DRINK LOTS AND LOTS TODAY!!  It will help keep your veins nice and plump.  And ask for a warm compress for the area that you want them to do the iv.  It will help bring the veins to the surface.

    Enjoy your Chemo Eve!  Love to All -

    L 

    · Share on FacebookShare on Twitter
  • JenXX
    JenXX Member Posts: 32
    edited October 2009

    Hello all:

    I had my first T/C/H chemo treatment on Thursday.  Felt fine more or less but a littlel dry.  Had the  neuroplasty (sp?) shot Friday and then started to feel a little flu-like - soreness, fatigue and chills.  Saturday I felt okay during the day but hands and feet were tingling at night and today I feel pretty bad.  Don't want to eat anything and am really tired and sore all over.  Should I take a painkiller?  How long is this supposed to last?

     I think it is ironic that this is breast cancer awareness month - boy am *I* aware!

    Thanks,

    Jen

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear JHenry,

    My chemo nurse recommended I take Tylenol Extra Strenght to help with bone pain and soreness all over. It is caused by Neulasta.

    · Share on FacebookShare on Twitter
  • jeanl151
    jeanl151 Member Posts: 146
    edited October 2009

    Hello, I have been reading thru threads and don't know if I will fit in here or Nov.  My onc appt is Oct 15 so not sure when chemo will start.

      Newtonville and Valeriekd,  i also am at Gillette Center.  Do either of you see Dr. Erban? I haven't met him yet....hoping he is a nice guy. 

      MarieK and azdiva-  I copied your lists of what to bring to chemo.  It gives me some ideas on how to prepare for the unknown.

      As I read the treads, I realize the waiting and worrying seem to be the hardest part. I was so worried about the 2 surgeries and the dread was worse than the actual procedures.

      take care as you each move forward with chemo sessions

    Jean

    · Share on FacebookShare on Twitter
  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Marie and Laura: Wishing you good luck tomorrow. You both sound so organized with your chemo bags.

    Jeanl151: Welcome!

    · Share on FacebookShare on Twitter

Categories