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Chemo starting April 2018

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  • duffyzmom
    duffyzmom Member Posts: 217
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    DJT - glad to hear you're experience went well. I managed to get dog, he's my Duffy :-) out for a short walk this morning. I'm still going full force on the anti-emetics. Trying to stay ahead of major issues, especially with the Neulasta OnPro on my belly, I'm concerned vomiting might cause issues before the infusion starts. Remember lots of water today.

  • maggie2
    maggie2 Member Posts: 240
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    Thank you all for the warm welcome! I've been taking notes about remedies for constipation, as I tend to have issues with that even without chemo.

  • ElizB
    ElizB Member Posts: 28
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    HI - Quick question! When do you ice your hands and feet . I mean which chemo drugs? Im on A/C now then Taxol after.

    Thanks Again!

  • maggie2
    maggie2 Member Posts: 240
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    ElizB, good question and one that I also wondered about.  I'll have one hour of Taxatere, then 35 minutes of Cytoxan.  Do I ice during both drugs?

  • Djt
    Djt Member Posts: 176
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    duffysmom, on your tummy.!....Mine is on my arm. Goes in at 7 tonight, goin out for my walk shortly. Nice you have your doggy, mine died about 5 years ago, sure miss her.. yes im aiming for my water in 21 ounce jugs, one morning, afternoon, and evening.

    Eliz the nurse said it's the taxols to ice for, but I started a bit early, and continued, also sucked on shaved ice, and frozen grapes, used biotene at home often. Best to you and Maggie.

  • Djt
    Djt Member Posts: 176
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    lei, have not seen you on here, thinking of you, how are you doing?

  • leli
    leli Member Posts: 25
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    Maggie2 - Welcome! I'm also doing TCx4. I'll be getting my 2nd treatment tomorrow. Have you tried Activia yogurt? I ate 1 yogurt every day for a couple of days prior to chemo and a few days after. I dont know if it helps with constipation but I know it is suppose to make you regular. I didnt have any problems with constipation. Good luck!

    Hope everyone is doing well!

  • maggie2
    maggie2 Member Posts: 240
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    leli and Djit, thank you.  I'll have to try the Activia, as I assume I'll have the problem.  What's interesting is that most of you that have had TC have experienced constipation, yet the SE printout that MO gave to me only mentions diarrhea.  This is one of the many reason why these discussion groups are so invaluable!

  • Mybctc
    Mybctc Member Posts: 4
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    Hello My namie is Michela Riccio and I have a concern but i am almost 66 years old and not good about postiing, but here goes.

    I was diagnosed with Stage 2 b breast cancer July 2017. Started TCHP September 18 and did not get the sixth dose as I was toxic,. Had several blood transfusions including a platelet transfusion in the course of the treatment which ended December 18, 2017. Still on Herceptin every three weeks and they are thinking about a ZOMETA injection soon and I start Anastrazole tomorrow after my last Radiation.

    and Daily Radiation was from March 12 until April 25. LAST ONE TODAY.l see h

    Bloodwork has been very stubborn. Rising by tiny increments it at all NYOH(N Y ONCOLOGY/HEMATOLOGY) takes it every three weeks.
    Lastime it was taken was today and there was QUITE A DROP from two weeks ago. Ihad a long talk with the Radiation Oncologist today. I wil see her Monday April 30 again per my request and they will drawblood again then and review.

    The issue is that Bloodwork has been so stubborn in terms of a return to Baseline. Even the NYOH team said they rarely see a return this slow.

    BUT LATELY, the numbers are going in the OPPOSITE DIRECTION.

    As fikkiwsL

    April 11: WBC 3.24

    RBC 2.81

    HGB 9.5

    HCT 28. 1


    April 24:

    WBC 1.97

    RBC: 2.48

    HGB: 8.4

    HCT: 25.3

    And I have all my blood work which is typically done every three weeks since CHEMO started September 18 Back in February /March these numbers were much highers.

    I have been getting DAILY radiation to the Breast from March 12 and Last Treatment was today. I am told this plays no role in the blood level drops.As stated, I addressed this this morning in great detail with the nurses and doctors. No transfusion is planned because the numbers dont justify it and no neutrophil the NEU# on the result report is 1.40 and so that is high enough to not have an intervention at this time.

    Bone Marrow Biopsy will be done maybe in June if numbers persist but I am told there is no test that would differentiate between abnormal bone marrow due to delayed chemo response and MDS for instance (Myelodysplasia Syndrome) My Onc said MDS is extremely unlikely due to the chronicity (It generally takes a while to appear and for me its only been several months) and the regimen of TCHP is not known to produce MDS while Adriamycin and Cytoxin are the ones likelier to produce it. I feel somehwat unwell and the numbers explain the weakness and malaise.

    . Has this ever unexplained drop in several components of the bloodwork happened to anyone? Is a secondary blood cancer a possibllity? Is there any feedback any one can share or similar experiences or advice (Other than talking with the ONC which as I said I fo and will continue to do. w)/Keep up the fight and please let me know of any experiences of thoughts that would be so helpful to me now.

    THANKS! MICHELA

  • Djt
    Djt Member Posts: 176
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    lei and Maggie, I just posted this under 60 and over on here last night! About the yogurt. Yes, yes and yes. It

    Ts a great boost to overall gut health. I make it a meal with sunflower seeds and about a small handful of blueberries. Just finished it in fact. Adds protein calcium and is low sugar.

    Another note....I found a couple of items I wanted to share, for the dryness CHEMO creates in the skin, I'm using -

    Neutrogena ultra gentle hydrating cleaner.

    CreaVe skin renewing Cream Serum

    Simple hydrating gel cream and Korres lip butter. All very affordable, and I got thru Amazon. Also, if interested, I ordered E. I. f. Eyebrow kit and pencil. Looks promising, her inexpensive, hope it works.

  • astyanax66
    astyanax66 Member Posts: 223
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    Hi, Michela, sounds like you have been through a lot--but you are done with treatment, right? I too (will go for treatment 4/12 next week) have been frustrated with my bloodwork. I'm not a doctor, but I would think they'd be able to do some less invasive tests for starters to see if there is blood cancer involved--would that even be possible since you are taking quite a bit of chemo? Please forgive my ignorance, though--I would say that if your MO is not fully answering your concerns, find a nurse navigator or ask for a 2nd opinion.

    My frustration has been that I feel like *I* have to interpret everything for myself on labs. Last week, liver enzymes were wonky. They told me to go off all acetaminophen (ow ow ow)--things were much better this round (one was completely normal; another just slightly elevated), but I had drops in red blood cells, hematocrit, platelets, etc. Plus, my heart was wildly racing and wouldn't stop (115-130 for 3-4 days), and I felt terrible. I went to Mayo and a few other cancer center sites--well, duh, I'm anemic--the symptoms and labs were like textbook for it. I've never been anemic and had no idea how it "felt." I've lightly increased my iron intake (I'd been so focused on protein, clear fluids, and electrolytes, I forgot about iron), and wow, in just 24 hours of making sure I'm eating satisfactory amounts of iron in food (not going crazy), I feel like a new person. I still can't eat meat easily, but choked some down today. I felt horrible even on my "good" day (Monday, before Tuesday infusion). Dang, I wish someone had said, "Hi, you might want to see about finding some iron to add to your diet to help...." Everyone there is great, but sometimes, I have to do the math, lol.

    I hope you get answers soon!

    Dee

  • astyanax66
    astyanax66 Member Posts: 223
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    DJT, I've been very pleased with ELF products. While not heavy pigmented for long-lasting results, for the price, they are great! I use their lipstick, primer, and eyeshadows to supplement some higher-end products, and it's a good deal. :)

    Dee

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
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    Hello lovely ladies,

    Its so heartening to see everyone geared up for this fight and supporting each other. This is the first time I am part of an online community and I am so happy I decided to join.

    Welcome Nimki and Maggie, all the best for your infusions on thursday and friday. Thanks GA Warrior, how are you holding up re the ear ringing.

    Deb, I was really achy after the shot infact the whole of last week was bad. This week has been much better. I was not getting much excercise but managed to get out yesterday for some light walking. Temperatures have started falling on this side of the earth. I am kind of dreading the flu season with the upcoming winter and a 6 year old. We did get the flu shots before I started chemo.

    Good tips on constipation. I intend to scroll up and write down all the tips mentioned in the messages above. I am trying to get some red meat in my diet to up iron levels to help with the RBC. Gearing up for AC 3 on monday.

    Stay well everyone

  • ElizB
    ElizB Member Posts: 28
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    Hi Michela!

    I have to agree with Dee as far as trying to get some help getting answers. I can’t even imagine what you both are going through- and you are the one who has to request labs or do your own research on symptoms. It’s insane and so frustrating. I’m new to this and am experiencing some of this already

    . I can only imagine your exhaustion physically and mentally trying to figure all this out.

    Keep coming here!! I learn something everyday but more importantly it strengthens me. Everyone is here to help- and they are wonderful

  • Weeeddie
    Weeeddie Member Posts: 17
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    Hello all you wonderful ladies in the April board, I'm scrolling through all the informative comments, sorry I'm not putting up much, quick update had my 2nd AC on Mon Apr 23rd, so far all good, one difference was after chemo I was absolutely exhausted, came home and went straight to bed at 6.30pm and slept for almost 13hrs! took clarityin from Sunday and planning to take it for 10 days. SE's so far minimal I prayer that it continues that way. I 50% through AC whipee

  • Djt
    Djt Member Posts: 176
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    weeedie, 1/2 through is fabulous, I'm 1 down 3 to go. Exhausted is ok, sleep it off, my se are also MINIMAL, metallic taste and restless is about it... I'm on day 3. Hope your up and about soon.


    Happy Thursday to all you friends here, we can and WILL do this.

    ☀️☀️☀️

  • Djt
    Djt Member Posts: 176
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    Hi all, well this is my 3rd day after 1st TC chemo, and my only issue is metal mouth. Boy oh boy, it s like a magnet mixed with rotten eggs in your mouth !, makes it hard to drink the water needed to flush. But if it's my only issue, I thank God. No nausea, no pain. Hope each day is like that for all of us. I did my walk 1.5 miles, I did find sugar free Ricola cough drops in the honey licorice type help. Best, all☀️ check in I care.

  • gawarrior
    gawarrior Member Posts: 367
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    Glad it wasn't too bad after all, djt! I hope you're doing okay today. I was tired after the first dose, too. Then, felt good the next day.

    I hope everyone is doing well!

    Duffyzmom, thanks for the tip. The MO also told me Colace or Senokot the day before, day of, and for a couple days after the next round, until I know I'm regular. Ugh.

    I saw the oncologist today - my white blood cell count is practically non-existent and I lost 2.5 pounds since last week. We leave for our cruise tomorrow, so he's putting me on Cipro as a precaution from catching anything. And, I get to have a WBC count lab draw on Sunday before I sail. Now, I'm scared to be near anyone! The up side is that he ordered me to eat my way through the cruise so I put that lost weight back on, lol. We'll do dose #2 when I get back.

    Hope everyone has a great week, I'll catch up when I get back. :)

  • ElizB
    ElizB Member Posts: 28
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    Ladies your energy inspires me. Our weather is finally starting to warm up ( 60's). I have got to start walking more .DJT the taste in your mouth sounds horrible. I hope it subsides soon.

    GaWarrior I hope you relax and enjoy your cruise and have a wonderful time! ☀️

    Had 2# Of 4 A/C yesterday. I feel so lucky my symptoms are minimal as well ( fatigue-flu-ish). But the darn Tinnitus-ringing/buzzing in my ears is relentless. Ughhh...Things could be much worse all around so I'm dealing.

    Thanks again ladies! You strengthen me

  • Djt
    Djt Member Posts: 176
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    GAWarrior, enjoy every minute, and every morsel! Lucky you.

  • astyanax66
    astyanax66 Member Posts: 223
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    Is anyone else getting bone pain about 48 hours after your weekly Taxol infusion? I was *writhing* last night, it was so awful. It only lasts a few hours, but this is the second time it's happened (I've had 3 treatments--I did have some bone pain week 1, but not like this). I am taking daily Claritin. Last time, they told me it was because I wasn't on Tylenol--but my liver enzymes were good, so I'm taking it again. From about 9-midnight, it was kicking me hard. I did take some Tramadol, which did very little, and that is what they say is their standard med for pain. I also took the Tylenol and some Advil. I guess all I can do is prepare for a nasty Thursday each week. I did ask if Taxol caused bone pain and was told no (but I think that's incorrect). Any suggestions on what else to try?

    Thanks,

    Dee

  • Djt
    Djt Member Posts: 176
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    Eliz, it's got to diminish soon, I pray for you. The taste issue got to me last night and I had a terrible wretched spell, couldn't keep claritin down so bone pain all night. Up today feeling better with gingersnaps. And a shower.

  • Djt
    Djt Member Posts: 176
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    asxtanyx66. So sorry, that stinks. Maybe the claritin and extra strength Tylenol combo can ease it. Mine started last night as well, pelvic area and hips to knees. More like a constant sharp pickling with no let up. Just enough to keep me jolting awake. Bad night, hope it gets better . Hang in there.

  • maggie2
    maggie2 Member Posts: 240
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    Thank you for all the great tips.  I had my first TC yesterday and it went well.  I feel quite drugged today and have zero appetite, though. We'll see how the days continue. Not knowing what to expect, I did take a Zofran this morning to ward off any possible nausea.

    My chemo nurse said she prefers to put the Neulasta on the stomach, as it seems to stay more securely, unless one is a stomach sleeper.

    Ga Warrior, bon voyage and hope it's a wonderful trip!

  • leli
    leli Member Posts: 25
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    Maggie2 - glad to hear your treatment went smoothly. Even though you dont have an appetite you need to force yourself to eat something. The empty stomach will make you nauseous. I had my 2nd round of TC yesterday and I was starved when I got home. Dont forget to take the Claritin. I hope the next few days are good to you.

    GAWarrior - enjoy your trip! Eat well!

  • astyanax66
    astyanax66 Member Posts: 223
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    Thanks, DJT. As far as metal mouth, it was worse the first 2 treatment. I put peanut butter on practically everything and that helped. Now, most things are just tasteless, but I'm sort of getting used to it.

    My pain feels different than tingling (I have some of that--it's noticeable, but okay)--this is like fire ants inside my marrow trying to gnaw their way out. I guess the best thing I can say is that does only last a few hours. I know now to cross off anything early Friday mornings, just because I need to sleep in.

  • duffyzmom
    duffyzmom Member Posts: 217
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    Hi All! SE decided to hit me hard today. I'm guessing it's the steroid drop. Nothing horrible but fatigue, sore mouth, a little neuropathy and yes the bone pain. Since son's graduation is tomorrow I've been trying to rest most of the day. I couple quick walks and a little housework since my in-laws are arriving soon but mostly just resting.

    DJT - good luck with the metal mouth. I've heard success with cinnamon. Like big red gum.

    Dee - sorry to hear about the bone pain. Can you bath? I soak with epsom salt might help. I'll try and look through my old stuff. I remember some awful hip pain last time but for the life of me I can't remember what I did for it.

    GAWarrior - Light and love for good numbers before your cruise.

    Maggie2 - I stayed on the Zofran for 48 hours just to be safe. And many little bites (I wouldn't even call them meals) just making sure I had something in my stomach every couple hours. Applesauce, yogurt, bevita biscuits, Ensure. Due to sore mouth I haven't been quite as good but I'm still getting soft things eaten.

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
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    Hello everyone,

    GA Warrior, have an amazing time.

    Duffyzmom, I picked up something from the pharmacy Biotene, dry mouth relief oral balance Mouisturising gel, helps soothe and protect oral tissue ( says on the box). Maybe you can give it a try. I have not used it yet. But I intend to after the next round.

    Now, about metal mouth. Funny story here. I have a few lovely friends who send me dinner/lunch the first 3 nights after infusion. Today I decided I should make something for them as a thank you, also, I love to cook. So I made a huggge pot of whatever it is, cause I cannot figure out how it tastes. And my sense of smell is very sensitive. So you see I smell all the spices 3 times over and taste porridge. I hate porridge. Poor husband has tasted it at 7 different stages and has assured me that its good but I am not convinced.... at all.

    Have a lovely weekend ladies.

  • nimki9
    nimki9 Member Posts: 4
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    Had round 2 of TC yesterday. Not feeling as great as I did the first time. Didn't sleep very well and stomach is aching this morning. On a positive note, I'm meeting with someone from an organization called Village Project that delivers 3 healthy, freezable meals a week to people and their famil going through chemo treatments for free. Which will be great because I've had zero desire to cook at all.

    ElizB - I see you are in Cleveland and so am I. Have you heard of them? They only deliver to a few suburbs on the west side so far.

    GA Warrior - Enjoy your trip,

  • Djt
    Djt Member Posts: 176
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    I am stuck with the drinking water issue now with metal mouth. It's become a huge issue. Drinking water is impossible. Yesterday, I resorted to peppermint tea, with stevia, that was doable, and a small cup of chicken noodle soup for the hot broth. Ginger ale is not doable either. I'm at a loss, does time diminish the metal taste? Even when not drinking or eating, I'm sucking on sugar free peppermint or cinimmon drops. Also even with taking a Xanax, I can't sleep much, any one else?