January 2013 chemo group

Options
11314161819112

Comments

  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Oliverhog, 

    I too am a Hodgkins survivor or 18 years. They think (although medicine is really just a guess) that I am bealing with this now b/c of where they did the radiation after the wonderful 6 months of chemo drugs. Argh. Nothing like having to do it again, huh? Sigh. I was 27 when diagnosed and 10 months into being married. My (at that time) new husband (now of almost 19 years) was such a trouper. I kept feeling like he should return me, like a car that falls under the lemon category. LOL! We decided though that if we could make it through that, than what ever life throws at us in the future will be a piece of cake. And then I was prego with our first child 9 months later. Man, my body was still a bit tired. Smile! I am so sorry to hear of all the complications from the Hodgkins chemo/rad treatment. I didn't suffer any long term lung or heart issues that I know of. Sending love your way!!

    LeeA, Yeah, I did the steroids for the 3 days. 1 before, 1 of, and 1 after. I'm now done until next time. Maybe I'll sleep tonight? I hope!! I'm a lifetime insomniac as it is, so I sadly am in tune with all the meds. Until this, accupuncture has been my greatest sleeping friend. I go back on Monday for some more. I'll keep u posted!! Steroids suck. LOL!

  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Armdbit,

    Thanks for sharing.  I ended up sterile from the chemo.  I was a college Division 1 high jumper and hurdler and just barely missed qualifying for the Olympic trials in high jump in '84. I had been intending on continuing to work out with the team and shoot for the '88 Olympic trials.  I felt in my heart that I had a real shot at it.  I lost my abilty to complete and had those dreams stolen from.  I lost my fertility, my thyroid function, my immunity because of the spleen, my lung capacity, and now my breasts that my not be able to be reconstructed.  

    I have had some blessings.  I'm married to a wonderful, kind-hearted, extremely gentle, thoughtful and patient man who is 12 years younger.  We got the news after I'd given up hope of ever being a mother, on my 43rd birthday that our niece wanted us to adopt her baby.  We were in the delivery room and took our son home on May 20, 2005.  And I have recently come home to the Catholic church and found a great deal of depth in the teachings of Christ, the bible and the church along with some outside reading by N.T. Wright, Chesterton, and Lewis.  I am a bit of loner and always have been because I was always so driven to succeed in track and in school and really focused all my energy on those, which I think made be seem aloof and arrogant, where I was in actuallity pretty shy and reserved. I didn't realize until now how many people actually care about me and my family and how many people have so much love and kindness in their hearts towards me.  I know that sounds selfish, but I don't mean it that way.  I mean it that I have seen it as a blessing.  It warms my heart and fills me with love.  Thank you all for your thoughtful, kind, inspiring comments.  They will help me get through this.

  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Hello Friends!  

    I am just catching up with the posts after my first TC treatment yesterday.  I'm using the cold caps so had training with a consultant all day on Wednesday which was quite humorous and very educational.  When we wheeled into the onc clinic yesterday with 2 coolers and a roller bag of supplies we were quite the spectacle.  Once I got the cap on I think most people thought I had a brain tumor.  The treatment went so fast it seemed because of the constant changing of caps.  I also did the dark nail polish and iced my fingers and toes as best I could during Taxotere, and that was COLD!  We had to leave the center and keep doing the caps so we had 2 pit stops on the way home due to traffic and weather and one was outside a hotel on a bench with guests coming and going! Laughing  I slept pretty well last night but did get up to dring and pee about 4 times.  Today I feel good, just not very hungry and a little tired -- I am waiting for the great steroid high i've heard so much about and put off cleaning my closet for...maybe tomorrow.  I saw an accupuncturist prior to treatment yesterday and it was great...so relaxed going in although I still took a Zanax just to be safe.  Doing the salt/baking soda rinse a few times a day, also added pure cranberry juice to my morning and evening water to ward off bladder issues as i'm really keeping it working!  I haven't taken any antinausea med yet - it said 'as needed' and I've been doing okay, just eating more but smaller bland meals although nothing tastes that great...I am craving taco bell, but I think i'll give it a few days!!! Going to get my shot shortly and I've been taking the 24 hour Claritin for about 3 days and will continue 4 more days probably - I take it on and off for allergies, so no issues there.  

    Amrdbit - did you start taking Silica?  I am now taking 225 mg 3 times a day per Frank Fronda's recommendation and my MO approved it.  Frank says its key to helping the follicles in this process.

    Rhonda and Amly, both Amdrbit and I are using the cold caps - we're early in the process but can share if you're interested, PM me with any questions.  I found a couple of great mentors that have helped me get started.  

    Good luck and lots of love to those starting today - I'll let you know how the next few days go.  thanks to all for the postings - I have really felt like I have a great band of allies in all of you!


  • karenneedshope
    karenneedshope Member Posts: 44
    edited January 2013

    Hello sisters! Just back from round two of my a/c cocktail hour and honestly I think it went a bit better this time. Didn't take as long either! I don't have that drugged feeling like I did before. Drank lots and lots of water and will do that the next couple of days. Time to get a nap in now and, fingers crossed, the nausea and headache will be less than after treatment 1!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Oliverhog, I don't know if this was your problem, but I've heard of people having really unpleasant reactions ( though I know your was more than unpleasant) because they run the IV too fast. That may be why you didn't react the second time. Maybe the nurse slowed the pump down.



    I'm glad you made it through all that.



    Blessings

    Paula

  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Nope, they started it out really slow.  I think I only had like 16 mg in me by the time the reaction occurred.  When the nurse resumed, she resumed slowly again and after ten minutes cranked it up a little.  I had my appointment with the oncologist at 2:30.  I was supposed to start chemo at 3:00 but I didn't get out with the oncologist and her nurse until about 3:30.  They said the chemo would take about 1 1/2 hours, which is a LOT shorter than the time I spend getting drips when I had Hodgkin's.  I didn't start at 3:30 because the onc nurse entered my weight at 117.0 and the pharmacty interpreted it as 117 kg, which would have made me about 260 lbs.  So they had to recheck my weight and redraw the drugs.  Thank goodness it was caught!  I ended up getting back into the IV area around 4:00.  And after taking my dexamethasone and zofran, I got the IV.  We didn't leave until after 6:30.  It was HORRIBLE.  After everything I've been through - when I went through the Hodgkin's I refused anxiety meds.  I refused sedatives for biopsies and lymphangiograms.  I was able to sort of mind control myself through it because I was a very disciplined athlete.  I seemed to have lost that somewhere.  Now I'm chicken s**t about virtually everything.  I did try to breathe my way out of the sensation as if I had somehow caused it with anxiety, but it was definitely not caused by anxiety.  They were right about it not happening when they resumed the drip and I'm hoping they're right about it not happening in the future.

  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Hey Ladies, 

    Waiting around for the other shoe to drop still. LOL! 2 days post treatment and 1 day post shot,  and I feel pretty normal except for tired, no appetite and good old chemo brain. LOL! I haven't taken any meds yet, (except for a clariten) but have the rest ready to go when needed. I did have a question for y'all. I have forgotten to do the mouth rinse and now I can't remember if it's water and baking soda or water and salt. And preportions? This is one to definitely stay ahead of. 

    Happy Friday afternoon to everyone!!

  • MamaK16
    MamaK16 Member Posts: 8
    edited January 2013

    Hiya.

    My notes say 2 tsps of baking soda to 8 oz of H20 or 1 tsp of salt to 8 oz of H2O.  Or you can use Biotene.  Don't use hydrogen peroxide though.  Hope that helps.  I am one day behind you and don't feel too bad either.....holding my breath!

    Krisitn

  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Thanks Kristin, I'll start with the salt b/c honestly that sounds less icky. LOL! But maybe I'll switch off between the 2 and see what seem to work better. I'm SO glad you are still feeling well!!! Yay!! 

    Deb

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    I was expecting to feel like doggie doo after this AC treatment. I stopped taking the anti nausea meds yesterday. Last one (compazine) was at 2pm. I did take a ativan to sleep last night, but, I think I'm gonna just take a benedryl tonight. Nothing, just some lower GI the other night. I think that was from constipation. IDK, I did hear that the first go around wasn't too bad. Does anyone know when we 'should' not need the anti nausea meds??

    A friend of mine who is further along in her battle told me the next ones were tougher. We will see I guess.

    I want to get back into the gym soon, but, now every idiot with a cold is out and about. I wonder if I can go to the gym in a body condom...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    I've had 2 treatments of AC, and I've never had any nausea. The only meds I've taken is the decadron that I take Days 2, 3, & 4. I don't feel bad at all until Day 6 when I have chemo fog. I even get a little faint standing for any amount of time. Days 7 & 8 I have the constant peeing, and I'm extremely cold. That's all caused by the steroids exiting your system. Oh yes, I lose my tastebuds for about 3 days, but I can find a few things that I can taste. Thank God for Taco Bell!!!



    Blessings

    Paula

  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    One more question..... this is a swish and spit, right? How long do you swish for? See, chemo brain. LOL!

  • hope49
    hope49 Member Posts: 370
    edited January 2013

    LOL for the mouth rinse I got the opposite instructions 2 parts salt to 1 part baking soda...I found that a couple of places, but now I'm wondering.  In any event, I've been doing about 1/2 tsp salt to 1/4 tsp baking soda in about 10 oz glass and rinsing and a littel gargle so i get the back of my mouth and doing it maybe 5 or 6 times during the day.  I am also doing the Biotene PBF rinse after I brush and it tastes very good.

    If anyone is in need of a good laugh tonight, I'll share this with you before I log off...I was reading the 'sex discussion' thread that a few were having and i was very tired that night...I saw the reply that said if you have sex your husband needs to wear a condom for the first 72 hours.  I was lying in bed that night thinking, what is the guy supposed to do when he has to pee?  When i woke up the next morning, I realized i really misunderstood that and i started larghing so hard I spit my toothpaste onto the mirror!!!  Got to find the humor where you can, right?

    Good weekend with no SE for all!

  • hope49
    hope49 Member Posts: 370
    edited January 2013

    For the salt/baking sodal yes swish and spit...then I do a little gargle just to get to the back of my mouth since my throat was a tiny bit dry the first time I woke up last night.  

  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Love all the post with the positive results so far to the treatments.  It is making me less scared for mine to start.  Skigirl72- Thanks for the body condom comment. It is nice to laugh!!!  But I do suggest you don't go to the gym right now with all the sick people out there.  Take care ladies!!

    Oliverhog- So sorry you had such a bad reaction.  That must have been terrifying.  They will know next time so I wouldn't think it would happen again.  I would remind them when you go back so they can check their notes.  Take care of yourself!!

    Colleen

  • JudyinNC
    JudyinNC Member Posts: 13
    edited January 2013

    Okay, Ladies; I hope I don't get in trouble for posting this - totally off topic, but I felt this would be so cheering to many of you:

    http://www.youtube.com/watch?v=tyPDQpel8bI

    I understand this isn't the purpose of this site and will not do it again if it offends anyone, but it so made my day, and anything that helps us get through right now is welcome.

    BTW, I've had a GREAT day. The burning in the stomach that was so miserable yesterday is gone.

    Judy

  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Judy, I loved it! It made my day and I thoroughly enjoyed it! Thanks!

  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Judy that was great!  It's all about findign joy in the simple things. SMILE!!!!!!!

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Judy, on my way out of the house but looking forward to watching the video later; however, I wanted to say that I'm so glad to hear your burning sensation has passed.  That's a good way to describe it (I've had a lower GI burning/pain but it had subsided enough today to go out to lunch with a friend from this site).  

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Judy, Thanks for the video! Fun song! I am glad you are feeling better.

    Soteria205, I thought I was strange for not having horrible SEs. Hopefully, they stay to a minimun for the next ones too...  My taste buds were nonexixtant for a few days. My scalp just started tingling and now I just want my hair to come out already. I want to get through that part and get on with the rest. I am trying to just roll with the punches. Sometimes I just get annoyed.

    Also, I'm not usually a weepy kinda girl, but, the last couple of days I seem to be tearing up at everything. What the heck is that all about?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Skigirl~The depression & tears are also from steroid downer. They are waving bye bye, and they like to make you miserable as they walk away. Just stick your tongue out at em. It won't last. You get the last laugh.



    Blessings

    Paula

  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Hey Oliverhog and LeeA - I grew up in Downers Grove _ not far from Wheaton . I've been in the Sacramento area since 1984 ! Wow - small world .



    Oliverhog - you are certainly no wimp !! Walking in your home and maybe some weight lifting and yoga would probably be great for u at home . My sister gave me a little book called morning cup of yoga and it is a very moderate intro - u might want to pick up copy . Thank you for sharing your story with us ! You certainly have been though some tough times but wih the excellent care and progress they have now for bc - you I'll have an excellent outcome! Just stay with the plan and stay positive - we are right there with u !

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Oliverhog,

    The only thing I can offer is that I took Decadron 8 mg twice day before chemo and they gave me Decadron 10 mg Iv just before they started the Taxotere. The doses are all decided by the onc and I am sure weight and all other factors, but I bet you get a bit more next time. Ask if needed.

    Take care, Sheryl

  • Liz_58
    Liz_58 Member Posts: 8
    edited January 2013

    Hi everyone, this is my first post on this topic. Up until now I've been hanging out with my sisters on the Canadian Connection thread. The support has been wonderful and I even met one of the girls that lives close by that has had a similar experience to mine. It's so comforting to be able to talk to people that know what you are going through and the knowledge sharing is unbeatable. I had my PICC line inserted today and got my flu shot so I'm all ready to start my treatments on the 15th, physically at least. Mentally too, I suppose, given the number of good news stories here. Thank you for that. There seems to be so much to remember. Right now my top three are drink lots of water, rinse my mouth, take the meds they recommend, and fit some daily exercise in. Guess that's really four. Can't let the list get too long or I'll start to forget stuff LOL. Sorry you all have to be taking this journey but thankful to have your company. Hope the weekend is good to you!

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Welcome, Liz58.  I like your avatar.  

    Wishing you good luck with your upcoming treatment on the 15th. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Welcome Liz...I'm glad you found us. I get my third AC on the 18th. I'm getting AC & T also.

    I hope you have a great week next week. We'll be looking for a good report from you.



    Blessings

    Paula

  • Liz_58
    Liz_58 Member Posts: 8
    edited January 2013

    Thank for the welcome and blessings LeeA and Paula. I do hope it will be a good report. Blessings back at ya.

  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Welcome Liz58, I am going to be getting the same drugs as you but I don't start until the 28th. I am still healing from the mastectamy. I wish you luck for limited side effects. Please let us know how your treatment goes on the 15th. Best wishes, Colleen

  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Skigirl72, it is okay to cry sometimes. I have cried several times since my diagnosis. I think as long as we don't let it take control of us we have earned the right to shed a few tears. I hope you feel better tomorrow. Hugs to you, Colleen

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Skigirl I love the body condom comment!!!



    JudyinNC thanks for the video. I think we can all use these nice distractions.



    Liz_58 Ciao, Bella!



    Hope49 you made me laugh with the toothpaste thing. Lol at wearing a condom for 72 hours. I'm so glad we canfind humor in the little things.



Categories