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Cytoxan Taxotere Chemo Ladies- February/March 2013

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  • KBeee
    KBeee Member Posts: 695
    edited October 2013


    I don't see MO again until my next treatment 11/1, but it will definitely be a topic of conversation. He is involved in heading up a clinical trial comparing 6 rounds of TC to dose dense AC-T. I did not qualify for the trial since my tumor was 1mm too small, so I think he just put me in 6 since that is what he is doing with others. other people who go to other doctors in this oncology group all have 4 rounds of TC. My tumor was 2.0 cm and I had no lymph node involvement. My concern is strictly risk-benefit. I do not want to risk long term weakness or muscle problems for no added benefit. If he feels there is a strong benefit, then it is certainly worth it. I was very strong ER and PR positive, so Tamoxifen is the most important for me. Hopefully I will bounce back as well weeks 2 and 3 as I did last time. I am chewing ice during infusions, icing my hands and feet, drinking tons and tons of fluids, and walking every day (running weeks 2 and 3). Hopefully these things will keep helping.


    ckmoss- I hope you get some rest and that your appointment goes well.


    setizand- i hope all goes well on Monday. If You have questions, ask; everyone here is so helpful!

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013


    Thanks to all for your thoughts on the yeasties-- one of the drawbacks to living in such a populated area is doctors can't see you on a same day basis, so I haven't been examined for the yeast infection, despite talking to three doctors' offices (MO, PC, GYN). The affected area is external, peri/anal area. Along with the itching, there are some bumps. Vagisil (suggested by the onc nurse) relieves it for about an hour, but it gradually gets bothersome again -- wakes me up in the night.


    I called my GYN and talked with him today, though they couldn't fit me in for an exam. He called in a prescription of Mycolog, which seemed to make it worse with a burning sensation, so I went back to the Vagisil. I see my MO tomorrow to check blood levels, so I will ask him. Maybe someone will have the answer -- doubt this will just go away on its own -- and it is driving me crazy.


    I am also getting a little numbness in my mouth -- maybe the beginnings of Thrush? I have been rinsing with Biotene, but maybe should switch to the salt/baking soda mixture?

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited October 2013


    sounds exactly like mine. Think I said before use a product like Daktozin ( zinc oxide and miconazole). Use it now and prophylactically for remaining rounds once or twice a day


    It should do the trick


    Also pretty sure I was some figures on 4 vs 6 TC think there was maybe 0.5% difference in long term stats - can't remember where. Will ask my onc tmrw what is her rationale


    I suspect after tmrw tamoxifen will be my new best friend :( or :). ????


    Ck re rads did you have good margins ?? Ie greater than 2mm ( preferably 10mm) there are 5 dimensions I think posterior, anterior Etc etc.

  • Mellie289
    Mellie289 Member Posts: 27
    edited October 2013


    Went for infusion #5 yesterday and discussed my peripheral neuropathy with the nurse practitioner who came in (another new face for me), then the substitute MO covering mine's maternity leave. The asked me if I wanted to reduce my Taxotere 20%. That made me happy! I said that I see a lot of people only do four cycles at the same dose, and since I'm doing six, I'm okay with it being at a lower dose. KBeeee - as you said, I am also concerned about risk-benefit balance and overtreating. I think this might have been a good compromise.


    I, of course, ran to the literature and I'm sure I'll be doing more searching today (because it was an on-the-spot question in her office without having the chance to research this choice). I calculated that my dose of TC is 75 mg/mm2 Taxotere 600 mg/mm2 cytoxan - this is the published protocol dose for 4 cycles that everyone is following, I believe, that was superior to 4 cycles of AC. My 20% reduction in Taxotere is not 60 mg/mm2, which seems to be a standard recommended reduction for issue with T causing neutropenia or moderate neurosensory symptoms. I don't think any studies have been performed to test the efficacy of low dose (60) versus higher doses of Taxotere, but the PN scares me, so I think I'm good with this. I've had surgery, I've done 4 regular cycles, I'm getting radiation and then going on Tamoxifen. It's nonetheless a hard decision and I feel like I need a magic crystal ball to make sure it's the right decision.

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited October 2013


    Mellie I know how you feel on the crystal ball I'm so afraid of a misstep. My RO is so laid back and wasn't even sure I needed rads. BS seems more aggressive. MOis somewhere in between. It causes me more angst than if they were all of the same page.


    Teamkim I'm kind of thinking like NC. I had same issue and thought it was a yeast infection. I started using the external cream left over from a previous infection. It didn't seem to help a whole lot or it took longer to heal. Now I am not sure if it was yeast or irritation to the mucous membranes maybe similar to what happens in our mouth. It did finally go away.


    Ck I hope your scans are good. I just wanted to weigh in that rads isn't so bad if you need to go there.

  • ckmoss
    ckmoss Member Posts: 95
    edited October 2013


    Afternoon guys!


    Feeling a bit better today..hopefully this is going to improve day after day.


    NoComp-I had a lumpectomy first-margin wasn't clear in top and had 1 node positive..went ahead with MX..and surgeon took out 11 more nodes..only 1 positive..so 2 in all. Also, he margins were all clear this time and he tested skin in the area and that came back clear. Ref to rads- I have read every single thing I could and also had a friend that went to 2 different rad onc and they all say the same thing..The line where you SHOULD have rads is 7 + nodes positive, lump 5+ cm...(I am under the lines with both of those)..there is only a 3% increase of not having a recurrence in the same exact spot where you are radiated and survival rate is the exact same with/without. The risk is around 30% chance that you will develop a different kind of cancer from radiation (bone, lymph, reproductive)..also higher chance of cording, lymph, etc. The risk out weigh the benefit with my stats. My friend that went to both rad onc had my exact same stats, as well. The nurse at my onc said that my onc is one that likes to treat aggressively so I know that he will want to argue this. I have, also, read in Cancer Today that they are finding out that a lot of treatments are doing more harm than good and a lot of oncologists are now trying to tailor the treatments to the individual. The city I live in is wayyyy behind times with just about everything medically.


    TeamKim-I have gotten infections from antibiotics all my life (before I discovered yogurt worked). I can tell you that Monistat and all the treatments burn like hell. Like really bad! But, I just deal with that part because in about 2 -3 days of using they are gone. You could try the 1 day dosage. I, also, can tell you that I never found Vagisil to work..I've come to believe that you get what you pay for with this. Hope you get some relief!


    TwoHobbes-I was just thinking of you today and was wondering how you were! Is the job going ok?


    Setizand-Welcome and I am sorry for the circumstance that has brought you here. Any questions or anything we can do to help..just let us know!

  • Dewey13
    Dewey13 Member Posts: 11
    edited October 2013


    Hi everyone! I'm new to the group - was diagnosed in August, and just started my first cycle of TC last week. This is the week my counts are supposed to be low, so wanted to find out how you all handled going out during this time? Should I try to stay in my house as much as possible? If I got out, should I really wear a mask? I know not to be around obviously ill people, but not sure how far I should go with making sure I don't catch anything. Thanks in advance!

  • JenSF
    JenSF Member Posts: 15
    edited October 2013


    Hi Dewey, I just started my 1st TC today. Feel okay. Home resting. If our energy level is good, we should take a walk. Even 30 mins may help. Better than hang around only at home! Many of us still go to work as usual. I will start Neupogen on Sat. Do you have the same? How do you feel? That is new to me..... Drinking lots of water. Hope I can keep up with my daily goal - min 2 quarts to 4 quarts! Let's share more through our treatments! It really helps when we are equipped with all the advices and experience. Love, Jen

  • ckmoss
    ckmoss Member Posts: 95
    edited October 2013


    Hi Dewey! I hate you have to be here but welcome!


    My nurse told me to avoid going to stores and restaurants during peak hours and to ask to be seated away from people. After my 2nd treatment, I could tell the 2-3 days my counts were down, as I would feel very tired those days...so I stayed home during those..however, I was still cautious and never went during peak times and stayed out of the theaters (small enclosed places). I kept Purell in my purse and used it after opening any bsn doors. Other than that, I really didn't worry with it. She said the biggest concern was bacterial infections. So when I gardened I used gloves and I kept my bathroom and kitchen squeaky clean. I used Clorox wipes constantly on handles and especially toilet handle. Actually, I was more concerned with the chemo getting on (in?) my husband. So was very vigilant in bathroom..paper towels, shutting the lid and flushing twice.etc).


    I hope this helps and I sooo hope you have a easy time of it. Hugs!!

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited October 2013


    Welcome Dewey. No you don't have to isolate yourself completely. Same as CK recommended, stay away from big crowds in close quarters. Don't go to the movies or the mall on Black Friday. Wash your hands as soon as you get home and move away from someone coughing or sneezing. Of course I didn't feel like going out a lot but I did go to get lunch or dinner many times and to the grocery store.


    CK work is going ok. I'm pretty much back in the swing of it. I do find I'm different though. My self worth is no longer attached to work and this career and I like the new me.


    Seitzand Welcome also. It's quite sobering to see young kids do this. It doesn't make it easier for us but it does make you think you should complain less! My son has had so much medical work since age 6 and I'm ashamed I don't handle it as well as he does but that's the truth. Still we get through.

  • JenSF
    JenSF Member Posts: 15
    edited October 2013


    hi Twohobbies, love your statement -


    My self worth is no longer attached to work and this career and I like the new me.


    Absolutely! Cheers, Jen

  • Dewey13
    Dewey13 Member Posts: 11
    edited October 2013


    Hi Jen, Glad you're feeling okay! I had a little nausea and poor appetite the first week, but other than fatigue that has been it. I've also been drinking water like it's my job (shooting for 2L per day) and eating as much protein as possible. I'm also trying to walk every day, although there were a few days after my chemo that I was so tired I just couldn't do it. So keep up the good work, with drinking and walking! We are only a week apart with our chemo, so we'll definitely have to keep in touch with each other! My doctor didn't prescribe me Neupogen, not sure why. Hope you keep feeling well! Take care, Dewey

  • Dewey13
    Dewey13 Member Posts: 11
    edited October 2013


    ckmoss and twohobbies, thanks so much for the info! I wasn't sure how obsessive compulsive I needed to be about the germs, but that helps! Hope you're all doing well. Good night!

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013


    Everyone -- thinking of you with healing thoughts -- sorry the following post got so long; I rambled!


    hi Dewey -- Some thoughts on the exposure to germs ..... Be prudent, but don't drive yourself crazy... I had my one-week follow up with MO today (1st tx was a week ago). My white cell count was 1 today, so it was extremely low. Next time I get Neulasta (or something like it -- checking with insurance). I have been working this week -- I am a college professor, so I am in classrooms with groups of people. I have been careful with lots of hand washing, antibacterial soaps and lotions, and trying not to hug people -- so far so good. MO says my counts will have recovered by Monday, so no reason to take more time off work, just continue to be careful. At home I turned all the chores over to DH who is using rubber gloves and lots of Clorox wipes in kitchen. We have 2 bathrooms, so I use one and he uses the other one. This weekend I am going to wash all the linens from the bed again -- washed them right before my infusion last week.


    On the yeasties front -- MO thinks I do have a yeast infection because my white count is so low. The prescription cream I got from my GYN, applied first and rubbed in, the followed by a generous coating of Vagisil is working for me. MO said in a couple of days when my white count recovers, it will go away, so he decided not to prescribe an oral antibiotic. The two creams combined seem to be managing the symptoms for now. What some of you have said about tissues being irritated by the chemo-laden excretions makes sense to me -- next time I will use some kind of zinc oxide ointment as a barrier from the start (thinking it is kind of like diaper rash). I have been using flushable wipes, but may switch to baby wipes for next time.


    Sorry to hear so many CT sisters struggling with nausea and difficulty drinking or eating, even days later. I have lost my taste buds (ate half of a chicken wrap at lunch today before I realized there was something spicy in the coating on the chicken -- took 20 minutes for it to register that my mouth was on fire!! Lol), but I am managing to find things that I feel like eating. Frozen yogurt has been a favorite throughout -- cold things are better than hot, for the most part. On my worst day I had several Pedialyte frozen pops -- they taste terrible to me now, but at the time they tasted good, go figure! I ate an entire seedless watermelon over days 3 and 4 -- cold and juicy! MO said the loss-of-taste thing should go away by around day 14.


    My friend who is a BC survivor told me that the key to chemo is flowing with it -- sleep when you are tired, eat when you can, keep something to drink next to you at all times, allow yourself to go with the cravings and aversions, take your medicines rather than suffering and do not expect too much from yourself. Trying to remember that -- not always so easy when we have people who depend on us, but in the end, she told me, learning to let go and trust your own self-care instincts is a great education that chemo gives us.

  • ailurophile
    ailurophile Member Posts: 124
    edited October 2013


    TwoHobbies


    you are right,I actually found a very good book to explain the situation to my little daughter ,A cancer survivor wrote the book , and her daughter draw the pictures. i'm hopeful that when i read it to her it will do it's magic!

  • KBeee
    KBeee Member Posts: 695
    edited October 2013


    Dewey SF- I am one week from my second infusion. 4 days before my first infusion, my youngest daughter was diagnosed with bronchitis and pneumonia. I never did get sick with it. I have 3 kids and have continued, so far, to attend all of their events and activities. I do go to the store at off/peak times. When I go to kids' events, I sit in a less crowded area. I do not eat at the events. I do not eat while using the computer or anything else. I wash my hands before I eat, rub my eyes, etc. I always, always have hand cleaner with me. I did use a lot of Lysol while my daughter was sick...still do. I spray down railings, door knobs, etc. I wipe down our computer keyboards and ipad daily with clorox wipes. We'll see how it goes this round, but so fR, I have done ok, and I did not get Neupogen or Neulasta. My MO refuses to do blood counts midway through (which irritates me) unless something is wrong. I do get outside every day to go for a long walk. This has been, and continues to be, big priority for me. I have eaten more red meat than usual (because I tend to be anemic), and have had lots and lots of fruit smoothies, which I throw a little spinach into as well. I am hoping these things all continue to work, as I have a swim meet and band competition to attend this weekend. With 3 kids, DH and I try to divide and conquer.

  • ckmoss
    ckmoss Member Posts: 95
    edited October 2013


    Hi guys!


    Well, I went to my oncologist today and CT scan and labs are showing no signs of cancer! Yeaaa!


    However, he said that my red cells are at a 10 (which would account for this fatigue) and I am anemic. He said.."Its possibly from the chemo". I was like..ya think???? -As I've never been anemic before. At least, it happened on my last one and now can only go onward and upward!


    He did insist on arguing with me about radiation. I was soooo sleepy from no sleep last night do to (sorry no other way to say) DAMN HOT FLASHES!..that I could hardly debate it. He finally asked would I at least go talk to rad onc. I agreed just to end it.


    Jen-I hope you are doing ok with your 1st time.


    Kbee-(excuse me if I've asked this before..memory..sighhh) Does he not do labs before each chemo?


    On one more not so great note...When they weighed me today, appears that I have gained 5 lbs since chemo began. He said some might be steroids..but I know that during SE days, the only thing I could taste was sweets and orange juice so I imagine thats where it came from...but, was worth it to taste something..so diet time now! (Also eating greens tonight!)

  • Mellie289
    Mellie289 Member Posts: 27
    edited October 2013


    Awesome news about the scans, ckmoss! I hope you don't need to do rads either. I'm so not looking forward to that.


    Day 3 of cycle 5 and I feel like I'm starting to head into the dark tunnel. Leaving work in a few minutes to go home and put my feet up for the rest of the day, but only after I buy some ice cream on the way home. My mouth is starting to feel burnt and I want some soothing. Fortunately, I haven't put any weight on in the first 4 cycles, so I'm going to indulge.


    Have a nice weekend, everyone. I'll be on the couch watching movies until I come out of the tunnel on Monday.

  • Dewey13
    Dewey13 Member Posts: 11
    edited October 2013


    Thanks Kim and Kbeee! CKmoss, great news on your scans! Jen, how are you doing? Hope you're feeling ok. Have a great weekend everyone!

  • KBeee
    KBeee Member Posts: 695
    edited October 2013


    ckmoss- Great news on the scans!!! Hopefully your red cells will bounce back quickly. The day I come for chemo, I have to come for a blood draw at 9:30, see the doctor at about 10:30, and then chemo at 11. Those are the only labs they draw.


    Mellie- I hear you on the ice cream. I am eating frozen yogurt while typing this! I hope you have a relaxing weekend, and that you are feeling better really soon.

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited October 2013


    Teamkim I think that is great advice from your friend. Go with the flow and don't expect much from yourself. This thing is bigger than us but only temporarily.


    CKMoss congrats on the scans. That's good news. I gained 7 lbs a couple of weeks after chemo. Been dieting and almost have it all gone now.


    Did anyone lose any nails? Today I noticed my nail has split about 2/3 of the way down and at least half way across. I want to try to glue it or something but I'm sure it's a lost cause. It seems like this will hurt and for a Long time till the nail grows out.

  • JenSF
    JenSF Member Posts: 15
    edited October 2013


    ckmoss - so happy to learn about your clean scan result! Fantastic. Congrats!


    Dewey and everyone, the day after 1st tx is okay. Sleeping and eating ok. Went out for an hour walk and forgot my skin is highly sensitive now - got facial redness right after I came home! Have to be careful for outdoor again! Lazy to fix lunch myself and will have to catch up at dinner. Water progress is good. Never that goal oriented in drinking water in my life! I can feel constipation may be coming. Will start the Neupogen shot tomorrow for 5 days. Nurse called me earlier and suggested to do it at night so possible bone pain won't affect me as much......oh no! I rather have a good night sleep.....will report later.


    Wishing everyone a peaceful and calming weekend! Love, Jen

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013


    ck -- great news from your scans! Wooo hoooo!

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited October 2013


    ck - that us great news re your scans. It is a HUGE relief when they tell you that isn't it


    JenSF if you feel the constipation coming on then get started on the colace (if you haven't already). Don't hold back especially over days 1,2 or 3


    Have posted elsewhere - but for my TC friends


    I have now been signed off my onc for 6 months :))))))))


    my bloods 5weeks post final chemo all pretty much back to normal. Neuts were 4.3. WBC overall 5.3. Lymphocytes a little low but nothing in the scheme of things


    The funniest thing my liver is now in better condition during and post chemo than it was at the start due to cessation ( or dramatic cut down of ETOH ) so ladies my message to you is chemo is better for your liver than alcohol - how scary is that !!!


    I Now have 6 monthly checks alternating between BS and onc. So no Drs or procedures for 3 months. And I am officially in menopause so starting tamoxifen tmrw


    Hugs to all. Xx

  • ckmoss
    ckmoss Member Posts: 95
    edited October 2013


    Good Morning! Thanks for all the Congrats!


    Jen-My Dr said that I could have Crystal Light as that counts as water..even the teas. It must, as I lived in the bathroom when I drank that. The pomegranate cherry is really good. Also, Powerade has the B vitamins in it.


    TwoHob-Still have my nails, but I have seen that a lot of ladies seem to lose them after chemo is finished..so still painting mine with "bullet proof" polish.


    NoComp-That is great! I know I get soooo sick of seeing Drs all the time!

  • Dewey13
    Dewey13 Member Posts: 11
    edited October 2013


    nocomp, congrats!!!


    Jen, definitely start the colace! It really helps, and helps most if you start it early. And my nutritionist said that any fluid without caffeine counts toward your fluid requirement. I've been adding lemon and honey to my water, making kind of a watered down lemonade.


    Two hobbies my nails are still intact but the nurse did tell me that could happen. My problem is that my scalp is really sore! I've cut my hair but my scalp is actually tender to the touch. I'm assuming that means my hair is about to fall out, but let me know if any of you have experience with this!

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013


    No comp!!!! Yay!!!!!!! I am trying to wrap my head around the idea of no dr visits for 3 months! How great is that??? Congrats!!

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited October 2013

    Dewey I had sore and itchy scalp before the hair fell out and maybe two or 3 weeks after it started falling out.  This included acne-like red spots.  Then it gets better.  I found it felt a lot better when I washed my hair/scalp at least every day if not twice.  I'm not sure why that helped but it did.   

    Yeah NC on the release from all things medical for a few months. I'm hoping at the end of November I'll be free of doctors for six months or so.   

  • ckmoss
    ckmoss Member Posts: 95
    edited October 2013


    My hair stylist said to use a natural bristle brush and brush your scalp/whats left of hair before I shampoo...or to use an exfoliating gel..she said this will keep pores unclogged and help hair grow back quicker afterward. It did get rid of my red bumps/itchy too. I used "Tea Tree Special Shampoo" that she uses in her shop for therapeutic shampoos. It has peppermint and tea tree oils. I can tell you with no hair the bottle will probably last me forever! lol..Only takes a dime size now.


    I hope everyone is having a great weekend...or as good a one as you can. Its cloudy and cold here so I have been a slug. Baking brownies now as am dieting Monday...sigh.

  • ailurophile
    ailurophile Member Posts: 124
    edited October 2013


    Hi ladies i'll get my First treatment tomorrow morning,I just want to start because I feel once you start it ,It will finish faster than you think.but I'm worried.I also don"t have a port.I heard some people talk about the weak vein and stuff like leaks out of vein??!!