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Cytoxan Taxotere Chemo Ladies- February/March 2013

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Comments

  • snoke1337
    snoke1337 Member Posts: 9
    edited October 2014

    Tobycc, this was after your second treatment? I have my second treatment tomorrow. I was wondering if I can expect the same reactions as the first treatment or if the side effects are different each time, or if they are worse each time.  I hate not knowing what to expect. It is the worse part because you can't prepare for it. I hope you are doing better! Thank you for sharing your experience, it is very helpful. I am fairly new to this website and discussion boards and I appreciate all the girls and their questions and input and sharing. It is invaluable. It is also good to have ones to talk to because family and friends get so tired of hearing. 

  • snoke1337
    snoke1337 Member Posts: 9
    edited October 2014

    Congratulations on finishing! I hope everything goes well for you. Thank you for all of your help and sharing!

  • snoke1337
    snoke1337 Member Posts: 9
    edited October 2014

    Hi enlm20Erica, I started chemo 3 weeks ago, my main side effects were fatigue, some tingling in fingers and lips that went away, dry skin but no rash, hair loss starting on day 10 after chemo. I still have some hair but very thin. I cut it short to eliminate some of the mess and it made it less traumatic also. I go for treatment #2 tomorrow. If I have different side effects I will let you know. I hope everything goes well for you!

  • PoppyK
    PoppyK Member Posts: 1,275
    edited October 2014

    Snoke, Will you have an appointment with your MO tomorrow prior to infusion? I did and we discussed my side effects, she changed some of my meds and the times/frequency that I would take them. This made the side effects much more manageable after the second infusion. The only side effect that was worse was the fatigue.

    I hope this helps and that everything goes smoothly for you tomorrow!

  • snoke1337
    snoke1337 Member Posts: 9
    edited October 2014

    PoppyK, I am not scheduled to see him before infusion, but if I have any questions or concerns they will get hold of him for me. My main concern is that at the beginning of the first infusion I had an allergic reaction and they had to stop the infusion and put me on benadryl then waited 30 minutes and restarted. I'm hoping it is smoother sailing this time 

  • Tobycc
    Tobycc Member Posts: 578
    edited October 2014

    hi Snoke....I realized one thing. Don't minimize the SE. After my first I had pain on bottom of feet I blamed on shot. Drying ski g on hands, but want awful

    Now I realize it was the start of a reaction. I also had some spots on legs. Not itchy though so I thought no big deal.

    Today was the first day I felt really tired at work in the afternoon. (Day 12) after second. 

    If I did not have such a severe allergic reaction I would say SE for me are the same. You may want to mention the I tingling and dryness 

    Unlike Hockey mine do not itch. Both hands are flaming red and swollen. Now they look like they may peel. MO said the only thing to do is take benedryl, I cover them with aquaphor at night, coconut oil or utter balm while at work.  And try to hide them :) 

    Poppy though I think reported feeling more tired 

    Good luck :)

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited October 2014

    snoke1337- Before they start your infusion tomorrow, make sure you remind the infusion staff that you had an allergic reaction with your first infusion.  You may want to have a chat with your MO about your allergic reaction prior to the commencement of round 2 to make sure he is aware of the situation and to ask your questions concerning the allergic reaction you had.  Hope this next round is easier on you.

  • Tobycc
    Tobycc Member Posts: 578
    edited October 2014

    oops wasn't awful. Sorry. Two finger typing on iPad

  • minustwo
    minustwo Member Posts: 13,397
    edited October 2014

    Snoke - do be sure to mention the tingling.  Doc do change quantities based on your SEs.

  • HockeyCat
    HockeyCat Member Posts: 68
    edited October 2014

    I finished the 6-day course of steroid today.. Rash is mostly gone. I talked to my MO, she said she will still do full dose chemo, and rash with a previous cycle does not predict rash again.... I hope she is right. Taking steroid this long was awful. I feel exhausted from lack of sleep. Hope I can sleep tonight.

    My 4th & the last chemo is scheduled on next Wednesday. Can't wait to get this over with!

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited October 2014

    Hockeycat- Glad to hear that your rash is almost gone.  Hope that the last round doesn't give you another rash.  As for the not sleeping because of the steroids, I know how you feel.  I finally started taking a Benedryl before bed time which seemed to help me sleep ( more like nap).  Hang in there...... you are almost done!!!!!

  • Trekgirl
    Trekgirl Member Posts: 3
    edited October 2014


    Went for my 2nd round yesterday. The Cytoxan went fine but 5 minutes into the Taxotere I told the nurse I was feeling weird. The next thing I know she stops the iv and injected the Benadryl into the line and I was on O2. There wasn't any pain and I wasn't scared or upset. I knew the nurses had it all under control. They really are so wonderful. The Dr. came out and said to see my regular MO in 10 days and he gave me a scrip to get an echocardiogram cause he knows MO is going to order one and let's save the time. Also said that MO will probably switch me to Adriamycin. Since I only received the one drug I'm wondering if this is going to mess up the schedule? I didn't think to ask, oh well the adventure continues......

  • minustwo
    minustwo Member Posts: 13,397
    edited October 2014

    Trekgirl - So sorry to hear about the Taxotere reaction.  I had Cytoxan & Adriamycin for my second round after surgery.  I had to stop the Herceptin due to heart issues, but that shouldn't be a problem since it doesn't look like you're HER2+.  Good to get a base line Echo.  Maybe this won't mess up your chemo schedule.

  • Trekgirl
    Trekgirl Member Posts: 3
    edited October 2014


    I think the nurse got more upset than I did. On a funny note I said to the nurse you don't have a bell here? She said oh you just call us we'll come over and I said no, I mean for when we're done she said oh you just leave I said no I mean for when we're done with all the treatments she said you don't have to ring a bell just call us, I said no you're not getting it I mean a celebratory bell for when someone is done with all of the chemo not a bell to harass the nurses lol. Guess she's never heard of it before. I might have to supply them with one.

     

  • Nomatterwhat
    Nomatterwhat Member Posts: 210
    edited October 2014

    Trekgirl,  the ringing of the bell, is the best feeling!!!!!!

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited October 2014

    Trekgirl, just goes to show that it's a good idea to mention any little change from the norm to the nurses.  When I had my lumpectomy, they had a hard time getting the IV in (I have thick skin, Lol).  Once everything was done I started to feel sweaty.  I bought it was probably all the gowns, pants, etc. I had on.  Next thing you know they're putting ice packs on the back of my neck and cold compresses on my forehead.  I guess they thought I might have been going into shock.  I never would have thought that.  

  • enlm20Erica
    enlm20Erica Member Posts: 38
    edited November 2014

    Question. .has anyone had or heard of anyone having Cytoxan/Taxotere without a port?  I'm scheduled for 4 rounds once every 3 weeks but no one has said anything about putting in a port. 

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited November 2014

    enlm20Erica- The answer to your question is yes...... I do know of several women who had 4 rounds of Cytoxan/Taxotere without a port.  Now with that being said, you may want to ask yourself about how accessible your veins are and do you have any easy time when the nurses draw blood or put in IV's.  If you don't have any these kind of issues, then you may not need a port.  Just remember that you need to hydrate the day before you go in for your chemo rounds and continue to keep hydrated after chemo ( to help flush and dilute the chemo through the body.)  Hydration will help plump your veins up and may make it easier to access your veins.  You may want to also ask your MO about whether a port is optional and the experience of the infusion nurses.  Yes, the infusion nursing skills are critical when it comes to getting the IV connected with minimal pain.    Some women prefer not to have that port because where the port is placed (upper chest area) and the scar that the incision may leave.  Hope this helps.

  • PoppyK
    PoppyK Member Posts: 1,275
    edited November 2014

    Erica,

    I'll share my experience, but keep in mind this doesn't happen to everybody. Some people have reactions to the drugs, many do not. My MO did not require the port, but after much consideration, I had one placed. (I started a thread on this issue.) I am young and decided to do everything I could to preserve my veins.

    My first infusion was without a port. In fact, several women here do not have ports. My port couldn't be accessed because I had an allergic reaction to the dermabond used on the incision, which lead to an infection.

    It started with a blood draw, no big deal. They had a difficult time starting the iv, which usually isn't a problem for me. They poked, prodded and dug around, blew a vein. I was actually in tears. They got another nurse; she started the iv no problem. Then the infusion started. I had a reaction to one of the drugs. (I can't remember which one... chemo brain, but it might be posted earlier in this thread.) I was in an incredible amount of pain. The nurse stopped the infusion, changed the dilution a bit, and after a few minutes, restarted it. Everything else went fine. Other than starting the iv and the reaction to the drug, it truly was fine. The vein in my arm was incredibly inflamed and sore for weeks. Even 6 weeks later, my vein is a deep purple.

    My second infusion was with the port. Much, much easier and no problems with the drugs.

    I hope this helps and that someone without a port will share their good experience. When I was debating whether to get the port, several people said they did not have a port and didn't have any problems.

    Poppy

  • Tobycc
    Tobycc Member Posts: 578
    edited November 2014

    ENML.

    I don't have a port and so far so good, with the exception of reaction last round to taxotere. I wanted to share also there is a thread for Christian women I find helpful. I am a mom of twins (fraternal boys now sophomores in college)...I could not imagine having just one child at a time!  So glad you found us. These threads have been a lifeline for me

    Blessings

  • metoo14
    metoo14 Member Posts: 165
    edited November 2014

    I had six rounds of it, just finished on Thursday.  I did not have a port and had no problems what so ever.  For me I just felt that having a port would make me look and feel even sicker.  Everyone is different and and what was right for me might not be right for everyone.  I wish everyone going through this tough time much luck!

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited November 2014

    Erica, I am having 4 rounds of Cytoxan and Taxotere and I do not have a port.  No problems at all with my veins after first round.  They do give me Benadryl before starting to prevent allergic reactions.  My doctor said that I did not need a port, but if I did have trouble, they would insert a PICC line, which is a long tube inserted with the help of X-ray.  I did drink a ton of water prior to the infusion.  Starting the day before I drank approximately 80 oz of water, plus 40 oz in the morning before going to the hospital.  It helps to hydrate you and plump up your veins.  The nurse also said that I could squeeze a tennis ball with my hand to help get the veins to pop to he surface. 

  • HockeyCat
    HockeyCat Member Posts: 68
    edited November 2014

    I didn't get a port either. My MO said I shouldn't need it. I didn't want to get it anyway, so I went without it. I have thin veins, always have some issues with blood drawn or IV so I was a bit worried. I was lucky to have a great nurse on my first round, didn't have any issues. But I wasn't so lucky on 2nd & 3rd. I was stubbed several times... :( Both time the nurse had to bring someone more experience to get it right. The drug leaked once and burned my skin. I have a scar for that... Finishing up with 4 cycles of TC this Wednesday.

  • minustwo
    minustwo Member Posts: 13,397
    edited November 2014

    I LOVE my port.  The majority of people I saw in my infusion center over 18 months did NOT have ports.  I expect a lot depends on how many continuing treatments or tests are projected.  I am HER2 positive so I had Herceptin infusions for a year after chemo, which is why my MO immediately said "port".  I have some lymphadema so I was glad all the blood draws could be through the port.  And I've had several scans with contrast - both MRI and PET/CT - and they were able to inject the contrast through the port.  I almost hate to have it taken out.

  • enlm20Erica
    enlm20Erica Member Posts: 38
    edited November 2014

    Thanks so much ladies. Whenever I have a question Iknow exactly where to turn. Hopefully no port works for me as well as it has for some of you. And I will definitely be drinking TONS of water! Before and after! Everyone has been saying that's the "Golden Rule" so it's #1 on my side effect reduction list. Thanks again.

  • Nomatterwhat
    Nomatterwhat Member Posts: 210
    edited November 2014

    ENLM, -- Rule #2 -- take your meds as prescribed.  Take your Zofran before you eat, in the middle of the night and first thing in the morning.  Stay ahead of the nausea.  I took Claritan and Aleve starting the day of chemo and for a week after chemo.  I don't know if anybody else had a calendar, but I wrote down each and every appointment I had, and still have, and each morning I focused only on that appointment to get through that day.  It scared me to look and think to far ahead.  Take care of yourself, we are here for you. 

  • wendeeB
    wendeeB Member Posts: 9
    edited November 2014

    enlm  I am on the same schedule you will be and don't have a port.  Im very vascular,  though.  Never had a problem.  Good luck


  • enlm20Erica
    enlm20Erica Member Posts: 38
    edited November 2014

    nomatterwhat, Thanks and I'm gonna have a calendar also to mark appointments and meds I wanna stay ahead of the sickness as much as I can. When I had my bmx I had the patch for nausea and never had any nausea but they also prescribed nausea meds, I was given promethazine which I believe is a generic of Zofran, I never had to take it so I still have it, I wonder will it produce the same results as zofran? Has anyone taken this? My oncologist also put in 2 prescriptions for when I start chemo, can't remember what they are exactly but I go pick them up tomorrow, so we'll see. 

    Wendee, thanks, I believe I will be okay without a port, my veins always do well when I have to get a shot, I'm kinda small/med but in good/fair shape lol so I should hold up. How have you been so far? As far as SEs? Since we're on the same schedule I'm sure your insight will be very helpful.

  • wendeeB
    wendeeB Member Posts: 9
    edited November 2014

    hey Erica! My side effects have been minimal. Round 2 is better than round 1. The first 5 days after the infusion are the most difficult, but I think that's just because of the corticosteroids actually. My first round I had extensive bone pain to the point where I had to take pain medication left over from my lumpectomy. I've never taken pain meds in my life. But this time it really helped. The only other noticeable and dramatic side effect for me is around day 3-5 after the infusion my mouth gets its really nasty white coating. But I've been rinsing three times the day with baking soda and it goes away very quickly. Really, honestly, nothing to complain about other than the corticosteroids and the resultant insomnia.

    I certainly wish you the best. I have not missed a workout, or a day of work. I don't anticipate that I will. I'm sure you will do just fine as well.  

    if you have any specific questions please feel free to ask. Blessings to you

  • Tobycc
    Tobycc Member Posts: 578
    edited November 2014

    question....anyone have a change in tx after a reaction?  I can't do adriamyacin due to heart, but after my reaction last time not sure if they will lower dose?  Spread out? 

    How is everyone's eyebrows and lashes?

    Hugs and blessings