Anyone Starting Chemo Jan. 2010?

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  • paxton
    paxton Member Posts: 577
    edited December 2009

    I liked Zofran and Kytril for nausea.  I had Emend for some tx's and not for others because the insurance was always baulking covering it because its super expensive.  I didn't feel any worse the times I didn't use the Emend. 

    The decadron steroid they give you in the IV works good, too.  I was worried about feeling wired because I have panic disorder, but it felt fine.  I'll just briefly share my experience with decadron.  They gave it in the chemo tx and then I had some I could take at home.  I felt pretty decent taking it at home.  You're suppose to take it for like a week and then kind of stop.  So, I'd feel decent for that week and then when I quit the decadron, I would crash so hard it was horrible.  So, I tried not using the decadron after I got home and felt fine, no big crashing.  There were a couple of us that felt that way about the decadron and others who had totally different experiences with it.  Just thought I'd mention it.

    Good luck to everyone with appts and starting chemo.   Oh, if you're interested in receiving little gifts and mail during chemo go to chemoangels.com and sign up.  Sometimes the little things help.

  • VegasDiva
    VegasDiva Member Posts: 109
    edited December 2009

    Hope everyone has a blessed Christmas and Santa brings you what you want.

  • mspradley
    mspradley Member Posts: 129
    edited December 2009

    I will begin chemo on January 5.  I'll be participating in the BETH trial so will be receiving either TCH or TCH + Avastin for 6 rounds followed by 6 weeks of radiation and Herceptin every three weeks until this time next year.  I was diagnosed just prior to Thanksgiving and had a unilateral mastectomy two weeks ago.  Anyone else in this trial?

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited December 2009

    Starting mine on the 8th of January. Will try without a port (as I have this nagging thing that having a port it would just increase the risk of infection - maybe I just had enough of being cut all over). Will have 4 x every 3 weeks of Taxotere and Cytoxan.I'm a stage 2 b with 1/1 lymph node involvement (SNB).

    What I am really worried of - is the fact that I ALWAYS get sinus infections over the winter, since I had been diagnosed with the Graves Disease in 2003. And that I have a couple teeth that need to be worked on - that I had been putting off for over a year for my thryoid to get back to normal as any major stress (and anesthesia would have been it) would have put me in danger of thyroid storm. Then the BC struck and things had to be put on the back burner for it. I already have antibiotics "on hand" if anything happens.The fact that I will start working not long after starting the chemo won't make things easier. 

    I'm supposed to have more lymph nodes removed for check-up after that and hopefully no radiation.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited December 2009

    Day -- a couple suggestions I used last time to avoid catching anything.  I carry hand sanitizer in my purse and car and sanitize frequently.  I try to use my own pen whenever I need to sign anything -- whether a credit card slip, sign in at the doctor's office, or fill out a form.  I quit shaking hands with people.  The funniest was when I told I doctor I was going through chemo and didn't shake his hand.  He looked at me kind of funny and then said "you know, that's probably a good idea".  I traveled on planes between rounds last time and would try to get the bulkhead, window seat and would wear a mask.  I've found that a mask doesn't protect you from others' germs, but it keeps you from touching your nose and mouth which will infect you if your hands touch something.  I got a Neulasta shot after each round (and will again this time) and made it through without a single cold or infection. 

  • paxton
    paxton Member Posts: 577
    edited December 2009

    I don't think I got sick the first time I had chemo either.  But then I stayed home most of the time because I didn't feel well.  I'm starting chemo on Wed. (abraxane).  I'm suppose to be going down to the Mayo clinic on Monday but I'm sick with a sore throat and cold and we've had terrible weather the past 4 days so I'm cancelling my appt.  I just want to crawl in a hole and hibernate into another lifetime.  I'm also waiting for my PET scan results and trying to come to grips with the possibility that its terminal.  I'm feeling very overwhelmed right now.  We've got numerous major things in the house going wrong (furnace, bathroom, pipes freezing, etc) and I feel like I'm having a nightmare I can't wake up from. In times like this, I recall some quote from the movie The Castaway about breathing and waiting to see what the tides may bring for tomorrow the sun will rise (something along those lines).

  • bbd
    bbd Member Posts: 53
    edited December 2009

    11tybillion-

    Thank you for starting the thread. It will be helpful to share our experience. I am waiting for an infection from my rexcision to clear. I am tenatively scheduled for 4x of TC to start either  January 7 or 8th. I should say nothing has gone as scheduled. For a planner, not having the plan work as scheduled is what is driving me nuts. I never fully appreciated what a control freak I am. Won't this be a learning experience for me Smile

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited December 2009

    Paxton -- I'm sorry you're not feeling well and I know how hard it is to wait for results of scans.  I will admit, I don't wait.  They are your medical records.  My husband works close to where most of my tests are run, so I've signed an authorization letter and have him pick up copies as soon as they are available.  I may not always understand every word, but the summary is normally clear enough that I can tell whether things are bad or good.  Plus, it gives me time to digest the information, so I can ask better questions when I see the doctor.   When I saw the onc two weeks ago, she started by saying "I'm sure you've already seen the results of your scans", so she knows I'm doing this.

    As a fellow Stage IV, I certainly have my bad moments, too.  However, I am trying to accept the advice of the onc which is that there are a lot of different chemo combinations they can try.  If each combination gives you a few months or a year of progression-free status, there will probably be new treatments by the time you run through the current ones.  For now, this is a chronic condition like diabetes or HIV.  We'll always be monitored and probably be in some sort of treatment, but there are lots of people who have been Stage IV for many years.  The PARP inhibitors are looking like a major breakthru for triple negatives, so there is good news out there.

    BBD -- I had to throw out the plan two years ago when I first was treated, as well. You'll learn to roll with it.  I think having to deal with something big like cancer made me less of a control freak because I finally started accepting how silly it was to worry about all of the little stuff.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited December 2009

    Cathy - I'm more afraid of what is already in my body not to get worse. The sinus infections I get because I have what my PCP calls "allergic-type reaction to cold". Whenever I breathe in air that is below 40F, my nose "swells shut" and the little openings through which the facial sinus drain get closed - hence I develop sinus infections over the winter. Never due to spring/summer/fall allergies. Only because of the cold. And the two teeth that have the "bud" of infection on them. I am afraid those would get worse.

    I am already all prepared for hand sanitizer, and everything else. I did take the flu and pneumonia shots - couldn't take the H1N1 shot because I was still on antibiotics after the second surgery - and apparentlyyou need to be at least one week off them for the shot to be efficient.

    I hope we won't have too cold of a winter.

    And thank you for all the good advice. Smile

  • ddieneue
    ddieneue Member Posts: 3
    edited December 2009

    Hi Vegas Diva, I am starting chemo on Tuesday (blood work tomorrow).  I am getting CT as well.  Lets stay in touch and I can let you know how I am doing with those two meds. 

    A bit scared but I had chemo 22 years ago and was told that this time around should not be as bad as meds have improved. 

    Good luck to you!

    Doris

  • VegasDiva
    VegasDiva Member Posts: 109
    edited December 2009

    Hi Doris:

    You can give me a 2 day heads up as to what to expect. Laughing  I'm getting really anxious and nervous.  I'm sure it will feel like only minutes until Thursday comes for me.  My appt is 8:15am.  What time are you going?

    I have to go into work tomorrow and write my review.  It is due Jan 11th, but I will be out starting12/31.  I would rather get a root canal without novocaine than write my own review. Do any of you have to do that too?

    Has anyone seen My Fair Wedding with David Tutura on the WE channel?  It is a hoot.  My boyfriend turned me on to it.  Go figure....Surprised

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited December 2009

    Well- I now know what my chemo regimen looks like. I'll be starting ACT for 8 cycles.  4 A cycles every two weeks, and then 4 CT cycles.  They give the Neulasta by default, but I may ask to hold it back if my blood work looks good.  I'll have my port put in this Thursday.  I'm scared of the side effects of the Adriamycin.  Anyone else had experience with this?  My Onc says I'll lose my hair by Jan. 22nd.  Now, I'm planning a short haircut this week so it won't freak me or my kids out when it goes.  I've started to gear up plan, but I have no clue about what to expect.  It seems so strange how different all the chemo regimens are.  I guess at some point you just have to trust your doctor knows best and have some faith. 

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited December 2009

    Oh yeah, 11tyBillion, I'm starting on the 6th too. It's good to "talk" to people that are in this with you. 

  • 11tyBillion
    11tyBillion Member Posts: 96
    edited December 2009

    Hi ladies!

     I was shocked when I came back to this post,because  so many folks have left responses!  It it so nice having others to talk to and to share with.  Well, it is "nice", but also "not nice", becasue I think we ALL would rather not have to go through this...

    Anyway, now that the holidays have cleared out, I should have a little more time to check in here.  We visited my Onc. last Wed., and we decided to go with the DD (dose dence) AC/T.  So i think that is the 8 week (4x bi-weekly), followed by 12 weeks (1x a week) Taxol.

     I also got my port emplaced last Wednesday as well.

    SOmeone mentioned that I should try to make a list of everyone on this board, along with their chemo regimen, and then place that in the intro somewhere.  I am  kind of laughing to myself, because I am still really new to this "posting" business, so it might take me a long time!  THat combined with the fact taht I have two small children to chase, I will try to get the list done before we are all done with our chemo regimens! :-)

    There are so many of you that I wish to reply to, but I will have to do that in another message!

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 143
    edited December 2009

    I was wrong when I posted my chemo regimen.  I'm doing the same one as you 11tybillion.  I start AC on the 6th as a dose dense regiment so I only have to do 4 of them.  Then the T will have 4 cycles too.  I'll have my port put in on Wednesday.  I'm working on finding some head coverings right now since there's no doubt I'll be bald.  My daughter told me last night she was afraid I'd look like a monster!   She's only 3 so there's no telling how she's going to react to all of this.  I'm just glad I started prepping her.  I think we're going to go get mother daughter haircuts (short sassy bobs) tomorrow so that we all can ease into my short/no hair look. 

  • bbd
    bbd Member Posts: 53
    edited December 2009

    Day-

    My brother-in-law swears by neti pots for his sinus infection.  I know that he was freaked out by the process in the beginning but has seen a tremendous improvement.

  • wren22
    wren22 Member Posts: 40
    edited December 2009

    I will be starting chemo on January 7.   I had a lumpectomy, sentinel node biopsy in October--surgeon did not get clear margins.  All other scans were clear, decided on the mastectomy.  Surgeon found another 1 cm. of cancer cells--good decision. TCx6, no radiation since I had a mastectomy.  Wondering if anyone else is doing the six rounds rather than the four?  My oncologist originally said four and then recommended six.  Naturally I would prefer four--any thoughts?

  • Issymom
    Issymom Member Posts: 264
    edited December 2009

    I will be starting my Chemo on the 12th.  It will be the same as Georgiabird and 11tybillion, AC/T.  I considered a clinical trial that would be either TC x 6, TC x 6 + Avasitin for a year, or TAC.  I really don't like the heart risk with Adriamycin but it I were put on the Avastin arm, I would not be able to have surgery until March of 2011.  I did delayed reconstruction and am BRACA1+ and don't want to wait that long to have my ovaries removed.  I am counting on prayers and surveillance to counter the heart damage concern.

    I also wanted to let you all know that there is a company, France Luxe, that is based in Washington State that makes what appear to be beautiful head wraps (I am still waiting for mine).  Anyway, they have a program called "good wishes" that will provide a FREE HEAD WRAP to women undergoing chemo.  The website is www.franceluxe.com.  In the upper right hand corner is the goodwishes link.  All the information is there but basically pick the headwrap and send an email to Lauie Erickson (her email link is on that page).  I have exchanged emails with her and she REALLY wants to get the word out and help women like us.

  • TerriJo
    TerriJo Member Posts: 25
    edited December 2009

    I will be starting my Chemo on Jan 13th.  I am not sure whether it will be 4 or 6 cycles, it is going to depend on the results of the HER2 results (neg 4 cyles, pos 6 cycles). The onc said the reports he had were conflicting so he ordered a FISH test to be done. For someone who has never liked going to the doctor, all of this is so overwhelming that I don't know whether I'm coming or going.

    I had gone to the doctor in late September because I had hurt my pinky finger and that's what led to having a full physical and a mammogram in October, followed by an ultrasound, bisopy and surgery the week of Thanksgiving. I had lumpectomy with sentiel biospy.  Also during the surgery  I received 1 dose of radiation at the time I had the surgery done (dose was equal to the 6 weeks of radiation), so thankfully that is something I don't have to worry about. The radiation treatment is a clinical trial that is being done at UNMC here in Omaha.  I was told that I probably wouldn't need to have any Chemo just take Tamoxifin and that would be it, but after meeting with the Onc last week it was determined that Chemo was needed because of the grade of the cancer and how poorly differnation the cells were, then followed by the Tamoxifin for 2 years and then another drug (don't remember the name) once I am into total memopause.

    I am a single mom with 2 children, ages 12 and 10, and am concerned about how this is going to affect them.  I have discussed most everything with them both the good and bad so they are aware of what is going to happen.  My son (10) is concerned that people will make fun of me when I lose my hair and that my head will get cold since it is winter time.   So while they are on winter break, we are going to go shopping for new head gear for me. I don't think I'm a wig type of person, so it will be scarves or turbans.   My sister is also going to make some hats for me.  I would be lost without her help and knowledge.  She works in a hospital and lost her husband to lung cancer 2 years ago.  She went with me to see the Onc and some of the staff still remembered her.

    I am thankful to have found this group.  Thanks for listening and being there

  • Cheryl_in_SI
    Cheryl_in_SI Member Posts: 17
    edited December 2009

    wren22-I'm starting same treatment same day but I will also get Herceptin

    Thanks for the heads up, issymom 

    Welcome Terrijo 

    Cheryl 

  • paxton
    paxton Member Posts: 577
    edited December 2009

    My PET scan came back showing no cancer on that liver spot.  It did show some in lymphnodes but nothing has shown up in that area on any of the other tests.  Onc said no guarantee that cancer hasn't spread, but this is the best results I could get for now so I'm pretty happy.   

    I'm starting Abraxane tx tomorrow.   Three weeks on, one week off for 3 months.  Then onto FEC followed by a db mast.

    I had dose dense AC X4 Taxol X4 the first time I went through chemo.  AC made me pretty tired and nauseas with diarrhea sometimes.  It wasn't horrible.  Taxol wasn't horrible either.  I felt better overall than on the AC but had 4 days of the bone pain 2-3 days after each tx.  I was really worried about that beforehand, but only resorted to vicadin twice.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited December 2009

    Paxton -- those are wonderful test results! 

    Issymom -- I looked at the website and they have beautiful scarves.  What a wonderful program.

    TerriJo -- Our children are probably the hardest part of all of this.  If you end up on six rounds, you will definitely know by the second round your good and bad days for each cycle. Plan simple things with the kids for the bad days -- video night, pizza or whatever.  Don't be afraid to mention all side effects to your onc because there are meds to treat most of them. 

    Georgiabird -- good luck with your port surgery tomorrow.  Be careful for a few days with raising your arm or carrying anything heavy.  Mine goes in two weeks from now. 

    Doris -- I think you will find it much easier this time.  I had chemo two years ago (and have a recurrence now) and never was seriously sick.  There are meds for almost all side effects, you just need to tell the onc.

    VegasDiva -- I've been self employed for so long that I barely remember writing reviews, but, yes, I did work for companies that made you do self evaluations. My husband still has to do them twice a year and hates them.

  • BostonScrapper
    BostonScrapper Member Posts: 1
    edited February 2010

    Hello everyone,

    I've known about the  lump for two years, doctors told I was to young at 35 for BC. Now, I have IDC ER+ and PR+ positve, Her2 negative Stage 1, Would like to be a part of the group. Thank you By the way I'm in Boston, anyone from New England!

  • DebbieD
    DebbieD Member Posts: 2
    edited December 2009

    I'll be starting the week of the 12th, I don't know the exact day yet.  I am TN and will be getting dose dense AC every other week for eight weeks and then taxotere once a week for 12 weeks. 

    Thank you to all you women who have been through this and are so generous with your tips and wisdom!!

    Debbie

  • kimbers
    kimbers Member Posts: 26
    edited December 2009

    Hi ladies,

    I will be starting chemo on January 14th. I am doing a clinical trial of 12 weeks of Taxol and Herceptin and then coninute with Herceptin every 3 weeks for a year.  The trial is for small node negative HER2+ tumors.  Along with my small invasive tumor I had over 3cm of high grade DCIS.

    I am also nervous about the side effects. It will be nice to have a place to go to get support.

    I'm married and have 3 kids under 10 and was diagnosed right before m 40th b-day.  Not the way I planned on celebrating my 40th!

  • bbd
    bbd Member Posts: 53
    edited December 2009

    Boston Scrapper-

    I too am from Massachusetts. Norfolk.  You may want to edit your signature to put your diagnosis in that way it will stay with your posts. I too am Stage 1. I am at Newton-Wellesley H for treatment.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited December 2009

    Since it looks like many of you are going to be on Taxol or Taxotere, I have a couple suggestions.  Both of these drugs are known for making a mess of nails.  I found that keeping my nails short during chemo made them less likely to tear.  It took about two full rounds of growing out my nails before they were strong again, but they did recover (just in time to cut them short again).

    Likewise, neuropathy (a tingling or numbing in fingers and toes) is pretty common.  The onc had me take 100mg of B6 every day to try to combat that.  Talk to your onc and see if B6 is an option.  I'm back on it already because the cisplatin I'll be taking can cause the same side effect.

  • paxton
    paxton Member Posts: 577
    edited December 2009

    I'm back from my first tx.  I went by myself and surprising wasn't super nervous.  It went fine and I'm feeling ok.  I was able to eat supper just fine and give the baby a bath and put him to bed. 

    I didn't experience any problems with my nails during taxol.  I only lost my eyelashes and eyebrows for about a week through the entire regime of ACT and they grew right back.  I did get the numbness and tingling so we didn't do the final round of chemo because it can be permament.  I don't have any permament pain from it since. 

    I started reading a good book from the library if anyone's interested.  It's called Break Through Pain: A Step-by Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain by Shinzen Young.  It comes with a CD which I haven't listened to yet.  Its good for dealing with everything, not just physical pain so if meditation interests you at all, give it a read.  Its not super long or complicated.  I've found some of these techniques a life saver when scary things are on the horizon.  And there's no religious affiliation either.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited December 2009

    Paxton -- glad your first treatment went well and that you are feeling okay.  I'm trying to decide whether or not to drive myself this time.  Last time I always had someone take me and then had my husband pick me up after work (he works a couple miles from where I get treatment).  I need to talk to the onc next week and find out how long each infusion will be.  We've switched treatment plans since we first discussed things a few weeks ago and I'm not sure about the new infusion times.  If it's only a few hours, I'm pretty sure I can drive myself.  The problem I had two years ago is that it was taking up to six hours and I found the whole thing exhausting by the time I was done.  Which, of course, seems funny since you're just sitting there.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2010

    I know chemo is not the way any of us wanted to celebrate 2010, but here's wishing everyone a good new year, successful treatment, and low side effects.

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