AC+T SEs

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Trvler
Trvler Member Posts: 3,159

Can anyone who has AC + T comment on the SE's they are experiencing? Can you specify your course, length and where you are at?

I am getting ready for my second AC next Tuesday. So far, the worse SE has been almost constantly stuffy nose. Will it get worse the longer I go?


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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited April 2015

    Hi Trvler, I had AC/T and finished 11/25. I had the runny nose and still have it. I had nose bleeds every night on Taxol. Others may not have the runny nose, you can never tell until it happens. But if that is all you have, you are doing well! Have a great day.

  • Leighrh
    Leighrh Member Posts: 317
    edited April 2015

    I am on A/C every 3 weeks, next go round is April 16th.  So far so good, biggest SE right now is aversion to food.  I too am worried that the more rounds you go the more severe the SE's get.  I am feeling kinda lucky right now but keep in mind that it will prob get worse.  I am even thinking of taking leave from work, not that I need it now but just the anticipation of what's to come.  Everyone seems to be on different chemo's, I'd love to have this thread stick around for us A/C ers!

  • rleepac
    rleepac Member Posts: 755
    edited April 2015

    Trvlr - I think you've probably read my experience on the March chemo group thread but I'm one of the unlucky ones to experience a lot of SEs. I have completed 2 rounds of AC and I go in for round #3 tomorrow.

    Round 1 was horrible! SEs started within 3 hours and I was out of commission with nausea, fatigue, headache, hot/cold sweats, dehydration, and bone pain. There were probably more but my chemo brain can't remember them right now. First 4 days I couldn't even get out of bed and then the Neulasta bone pain started just about 3 days after I was starting to feel better.

    Round 2 was better. Talked to MO ahead of time and changed the plan a bit. They gave me a 'Sancuso' patch (7 day patch) for nausea and brought me back the day after treatment for another 1.5L of fluids with the Neulasta shot. Still felt crappy but not nearly as bad as round 1. Still had some bone pain but not as bad.

    Right now...one day before round 3 - I have a chronic drippy nose (but no nasal congestion) and fatigue. Intermittent bone pain but very manageable. I'm very nervous about round 3 - not sure if the accumulative effects will make it worse or if our new 'plan' will continue to ease the effects.

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2015

    I did 4 DD A/C (every 2 weeks) neoadjuvant and it was not 'bad' at all and did not slow me down at all. My nose and eyes would sometimes start 'flowing' (like a spigot was turned on). I lost all appetite - no nausea, just never got hungery or thought about eating so Hubby would call me several times a day to remind me to eat something. I lost all sense of taste and smell - nothing tasted 'bad' just no taste/flavor at all. I had no problem drinking enough water as habit took over - I am a 'waterholic' and always have cold water at hand so it was not an issue.

    12 weekly Taxol adjuvant amd it was nasty. I basically existed either in bed or on couch in front of TV completely and utterly exhausted. Eyes and nose continued to 'run', no appetite or sense of smell. Still no nausea even when I quite bothering to take the anti-nausea meds 1/2 way through. 1/2 way through, my K (potassium) levels 'tanked' and had to go on mega doses of K (I still have issues after 5 yrs keeping my K levels up in normal range). The good thing was that a week after last Taxol, the exhaustion started going away while I was on rads. It was about 1/2 way through Taxol that LE (LymphEdema) started.

    There is no way to know what you will experience based on what other of us have experienced. We are each so unique and our bodies handle what they have to in different ways. Certainly there can be some similarities, but no guarantee as to what 'you' (anyone) will actually deal with (or won't).

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2015

    Hi Leighrh

    How many rounds of A/C will you be having? Hope your s/e continue to be not so severe.......I start this month every 2 weeks 4 times..

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2015

    Hi

    If SEs are too much, perhaps your onc can do what mine did, - after one A/C she decided to break up the doses. My daughter's wedding was weeks away, so I after one A/C, I had 3 rounds of cytoxin and then 3 rounds of adriamycin. Although it extended the length of treatment, I got through the wedding feeling fine!

    DD taxol was ok.

    Sending wishes for an easy time for all here!

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2015

    Hi NYCG

    Was the A/C very tough on you....I am so scared to start this.

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2015

    AJ, - i think the onc was extra cautious because I had an infection after my bmx, have a heart murmur and also had wedding for my daughter after what would have been my third A/C. You will be fine, - i think that the anticipation is worse than reality! Any side effects can be managed with adjusting meds, I assure you!

    It is very do-able!! Try not to worry! and check back on these boards if you have any questions, - the people here are so wonderful!

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    ANewBeginning: I know it's easy to say try not to worry. Of course you are going to worry. I started last Tuesday and so far, I have been very lucky and my SE's have been mild. I have no idea what the future holds which is kind of why I started this thread. If I am headed far worse, I wanted to be prepared but it seems like there are no easy answers. Each of us is different and responds differently. Bekah has had a hard time on this same regiment.

    You should join one of the groups though. We are in the March 2015 group. I am sure there must be an April group but if not, feel free to join us. I think there is one other person starting your same regiment tomorrow in our group.

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2015

    I started March 31 with AC and so far have done very well. I have been able to walk several miles each day and have had very little nausea. I am thankful for the premeds and at home meds, which have done their job.

    What premeds and at home meds was everyone given? I am given Aloxi, Emend, Dexamethasone, and Zantac premeds. For at home meds, I am taking 8mg Zofran every 8 hours. I have Compazine too, but have not needed it. MO als has me taking OTC stool softener, Zantac, and Claritan. So far, the combination is working. I am hoping that my good luck continues!

    I know it is just day 3, but every good day is a blessing; I'll take all the good days I can get

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Kbee: Exactly how I feel! Every good day is not a bad day. I have Dexamethasone and Compazine and Ativan. I haven't taken any of it for a few days now. I take Linzess already for constipation along with a daily dose of Miralax.

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2015

    Hi there! Feb 2012 chemo group here to offer encouragement! Just wanted to stop in and let you know that not everyone gets horrible side-effects from AC or T. We are all so different -- but I trusted my MO and my chemo nurse who told me that if I was getting nauseous at all then they would adjust my meds because it should not be happening. After my first AC we had a 45 minute drive home in Chicago area rush hour traffic. I was checking my phone and realized I was starting to feel a bit as I usually do if I read in traffic. It stopped. Then a friend from church brought my family dinner. It smelled soooo good - so, contrary to what I'd been told - I ate some mashed potatoes. Well it wasn't very much longer that I started to feel that urpy feeling - the kind where you just know you need to vomit but it isn't happening. That went on for a while (no urping however), but then I fell asleep and when I awoke an hour or so later - I was fine. And I was FINE thereafter. When I told my chemo nurse - she said let's have you take one of your anti-nausea meds an hour before you go home. That's what I did and again ... I never had another inkling of nausea. We still had rush hour traffic. I did choose broth as my first 'food' each evening thereafter. We even left Chicago for a trip to Florida - straight after my final AC infusion. I also did not have any bone pain from the shot which I actually gave myself the day after each AC. I did not take Claritin. I drank tons and tons of water before, during, and after my infusions. I also ate Minute Maid frozen lemondes during treatment. I am a runner (not fast but keep going) and was able to keep this up throughout chemo. I was 48. I did not work outside the home so you can factor that in and my youngest was a senior in High School (so there's that ;-) !

    12 Weekly Taxol. No neuropathy. (did not take high dose Vitamin B based on some studying that I did - to each his/her own). I was still running. I lost 3 toe nails (2 big ones and the one to the immediate right of the big toe) .... which my oncologist attributed more to my running and I attributed to a combination of both. My toenails appeared purplish (as if bruised) but there was absolutely no pain, no oozing. And eventually they just lifted right up with slight regrowth already on the big toes. So ... I've given her the big toes from all my miles - but that other toenail did not grow back in the same way. It has a little ridge across it and a kind of thickened edge. So my nail people and I are more privy to that than anyone just casually looking down at my toes. Probably the most disconcerting thing that occurred while on Taxol was weight gain. I was running and running - 30 miles a week and each week the scale rose. This was extremely disconcerting. MO did not believe it was related to steroids because they were such a low dose and not for very long. She thought it had more to do with being thrown into chemopause immediately with the AC and my system just reacting in a possible expected (weight gain with menopause) but unwelcome way. When I look back at the pictures - I am still thrown by how fast the weight piled on in such a quick amount of time and kept on even with increased mileage. BUT .... the bottom line is that once the chemo started clearing my system ... I did start to lose the weight. It was harder to drop pounds after that ... takes longer for the same results .... but it will come off. I figure with chemopause and Tamoxifen working against me ... I'm doing pretty good. Oh, and at 51, (periods never returned btw), I'm still not fully menopausal/postmenopausal ... Estradiol is in postmenopausal range and FSH and LH are not even menopausal.

    Everyone's body is different ... so our individual responses to these drugs will differ. Just know ... there are many people out there like me that had minimal to no side-effects.

    Hope this helps!

    Diana

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Thanks for your post, Diana. That was very helpful.

  • Supernannymom
    Supernannymom Member Posts: 50
    edited April 2015

    Hi All,

    I had my first AC on April 2, and I am just now able to function. Within 2 hours of leaving the infusion center I was nauseous...and within hours was up vomiting for 5 hours straight. After that, I had the next 7 days of dry heaves and extreme nausea...ugh. Needless to say - I am hoping some adjustment will be made for the next round...I lost 7 pounds in 7 days. I have my second infusion next week, the though of it makes me sick (and a bit weepy). I have never been nauseous like this before - it was awful. On a positive note- other than fatigue...nausea was the only SE I had....

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2015

    Super, I had the same experience yesterday despite steroids and emend and Zofran and compazine. Stayed up all night tossing my cookies, and had to go back to the dr for saline and intravenous zofran and ativan. Then came home and slept for 5 hrs. Woke up and took a zofran, contemplating an ativan. My mouth is burny feeling so I swished with biotene. Hope you are feeling better! Sounds like you and I may be in the same boat...hugs!

  • jbdayton
    jbdayton Member Posts: 700
    edited April 2015

    Supernannymom I am so sorry you had this terrible experience.

    For anyone in the future. If nausea starts immediately call your oncology office they will get you something to stop it. My MO told me this is not the time to be shy or worried about bothering someone. This is their job to minimize your discomfort.

  • jbdayton
    jbdayton Member Posts: 700
    edited April 2015

    Littleblueflowers I took Emend and they also put Aloxi in my cocktail. I know several getting Aloxi as well. My chemo nurse said my MO had to fight my drug insurance to get the Aloxi approved but he insists on both meds for Adriamycin treatments.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2015

    Good advice on the aloxi! I will definitely ask about it next time!

  • SweetHope
    SweetHope Member Posts: 439
    edited April 2015

    DD AC x 4 was uneventful. Neulasta caused a lot of bone pain, but once I switched from Claritin to Zyrtec, there was a big improvement; and I never needed a pain med.

    Taxol, however, has caused such severe knee and hip joint pain. Days 3 thru 5 have been spent in bed because I literally can not walk. This pain is very different from Neulasta pain. I've been taking Norco every four hours with no relief. Hopefully, Day 6 will be better. But, I think this was my last chemo. I see MO on Monday and unless she has a potion to stop this pain, I am calling it quits.

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Oh, Super. I am so sorry. I was hoping it wasn't something like that.

  • rleepac
    rleepac Member Posts: 755
    edited April 2015

    Supper...very similar to my first AC experience! Ask your MO about the Sancuso patch before next time. It really helped with my round 2 and 3! Also, don't be afraid to ask for more fluids...that helps too.

    Even a week out from AC #3 - I'm still taking Zofran, Compazine, and Ativan on a fairly regular basis to keep the nausea under control.

    Cancer sucks...chemo sucks too!!!

    Bekah

  • Valentine99
    Valentine99 Member Posts: 75
    edited May 2015

    With AC I had constipation and loss of taste. Then the night sweats started. Zyrtec kept the pain from the neulasta shot under control. With taxol it was all over body pain. So bad it kept me awake the first time. It lasted at least 2 days. After the first time I learned to take pain meds as soon add I got home and it made it bearable. The neuropathy from the taxol faded pretty quickly for me. Good luck and remember everyone is different.

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Thank you, Valentine. These pop ins from chemo survivors are immensely helpful to me (and I am sure others).

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2015

    well day three seems to be a little better...mild bone pain and upset stomach and burning tongue and constipation. Been pre loading with Claritin befor neulasta shot. At this point it's hard to figure out what's an SE from chemo and what's from the take home meds...is it sleepiness from the ativan for nausea, or fatigue beginning? Is the constipation from the AC or the Zofran, Compazine or the pepto? What does everyone do for constipation? Thanks!

  • rleepac
    rleepac Member Posts: 755
    edited April 2015

    It's hard to separate it all out which SEs are from the AC and which are from the meds that are supposed to minimize AC SEs.

    For constipation, I use daily Colace 100 mg twice a day. Then every few days I take 2 Sennekot at night. Haven't had major problems if I stick to that schedule.

  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    Once all of your hair falls out finally, does your scalp stop hurting as much?

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2015

    Mine quit hurting as soon as we had our head shaving party at the barn. Son and my other 'Sons' came out and we used the horse clippers. I was the first one done and then all the others were. (H

  • Supernannymom
    Supernannymom Member Posts: 50
    edited April 2015

    Hi Bek!

    I will ask about the patch for round 2. Just the though of infusion makes me nauseous...

    I was told that the AC is harder than the Taxol...I am really hoping that is the case. Even now - I will have random breakthrough Nausea...sigh. Right now I am giving myself shots in the stomach every day as I have a nice sized blood clot in my vein where the catheter from the port was inserted.

    This really is a journey - and each day has to be taken in stride and a grain of salt!!!


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  • Simplicity
    Simplicity Member Posts: 747
    edited April 2015

    ANew; I start my AC/T treatment on the 21st of April as well x4. Wishing you the best, and minimal SE's!

  • Leighrh
    Leighrh Member Posts: 317
    edited April 2015

    Thursday I head back to the AC bar for round 2.  I am already nervous! I did not have bad SE's with the first round so I am scared that this one is going to be different for some reason.  I don't know why... I guess I am just waiting for the other shoe to drop or something. I have had 2 really good weeks and I am dreading Thursday!

    Trvler - My head really doesn't hurt too bad... but I didn't shave it.  I cut it just below my ears in length.  Don't have much but a little hangs out under a ball cap.  I am wearing a scull cap at night and it's not bothering me. Top of my head itches though.

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