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Chemo starting December 2018

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Comments

  • lilliangish
    lilliangish Member Posts: 54

    Insideout ~ thank you. I needed to hear that today. God bless you. :). And thank you to all who have been through this, who stopped by with encouragement

  • scrafgal
    scrafgal Member Posts: 413

    Wishing you well ladies...I was in the March 2017 chemo group, and doing pretty well!

  • Emerald77
    Emerald77 Member Posts: 1

    I started my AC-T chemo last week. Head to my second treatment this week. First round went pretty good. Wasn't sick at all. Took Claritin for bone pain after the Neulasta shot.

  • moderators
    moderators Posts: 8,739

    Dear Emerald77,

    Welcome to the BCO community. We are sorry for your breast cancer but so glad that you reached out to our members. We hope that you will find support and helpful information here. Stay active as you can and keep everyone posted on how things go for you. Let us know if you have any questions about navigating the discussion boards. The Mods

  • nanette7fl
    nanette7fl Member Posts: 412

    I've been so very tired today. I think I have spent 85% of the sleeping.... I just feel so worn out. Is this from my Taxol/Herceptin tx on Wednesday? My bones don't seem to hurt so much right now but I feel like a worn out old dish rag

  • MarnieMay
    MarnieMay Member Posts: 15

    Spent most of the night awake due to little shooting pains that would come and go all over. Lots in my wrists, knees and ankles, but could feel them in my pelvic area and thighs also. Advil didn't help, but seems to be dying down now. I searched the forums and found other people had this as well. For some it was only after first treatment. A few others had it appear a few days after each treatment. Feels like nerves mis-firing.

    nanette7fl - I am not tired yet. Feel like i am still would up on steroids although I shouldn't be anymore. You said your bones don't hurt so much right now, did they yesterday?

  • nanette7fl
    nanette7fl Member Posts: 412

    MarnieMay yes my legs (mostly knees and ankles) were hurting/really achy Thursday and Friday especially at night. Today so far no pains or aches but the 'runs' are starting and it's not fun SickTired I never did get the 'up' from the steroids and I was nicely surprised Thursday morning to see my blood sugar wasn't too bad (138 I'm a type 2 diabetic non-insulin)

    Hope you stay well ((hugs))

  • anx789
    anx789 Member Posts: 241

    Yesterday was DAY 3 after infusion - swollen face and hot flushes in my cheeks all day and night, feeling very sick, hard to get up and move, seems like there is too much weight on me that I could not move or get up. No nausea but plain sick. My Onco recommended Benadryl and Pepcid to help with the hot flushes, let see if it works today.

  • lilliangish
    lilliangish Member Posts: 54

    MarneyMay, thank you. You just explained why I hardly slept at all last night. Shooting pains in knees, pelvis and legs. It's comforting to know this is normal for chemo.

    Nanette, day 4 and 5 were days I could hardly do anything but sleep. Yesterday I started walking outside and that helped and day 6 was noticeably better.

    AnxiousLady - hang in there...couple more days and I bet you’ll feel better

    Today is day 7. What exciting things will come my way today?!

  • sweetolyve
    sweetolyve Member Posts: 9

    Well, I am into day 3 after my first infusion and I have to say this has nearly kicked my behind. I'm not sure which was worse, feeling weak or being dehydrated or hung over from phenarghan. I feel like I am caught in a catch-22 where if I don't take the phenarghan or zofran I'll get sick, but when I do I'm too tired to force myself to drink tons of water.

    I did read something about withholding food prior to the infusion and I believe that it helped me out tremendously. The thought has occurred to me to request a bag of saline or two to kick start my fluid intake. Has anyone ever done that?

    Thanks for letting me speak. My mind is literally in a fog from the anti-nausea meds I can't think straight.

    I look forward to hearing from you all soon. I hope you all weathered that better than I did.


    Debbie...(0;

    <><

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Please search this site for info about fasting and "fasting mimicking." It helped me so much on my SEs. I tolerated chemo very well. I posted about fasting in the "chemo Aug 2018" thread, and others have posted too. It's something easy, free, and effective.

    Best wishes to those on this thread!

  • cherd
    cherd Member Posts: 4

    Hi All

    I posted at the beginning of the month and have been laying low on any updates because I officially start tomorrow! I have been reading all you informative posts and so ready to get this thing going. Apprehensive more about what my SE will be . . . I start 6 cycles/3 weeks TCHP with neulasta onpro injection. Started steroids today. Also today been pounding water 80 ounces and doing intermittent fasting which is not difficult for me because prior to finding out about this crappy cancer I was doing intermittent fasting and keto.

    Several questions for those who are into their cycles: Do any of you still have soreness with your port, mine is so sensitive, had it placed 6 days ago, bruised a a lot. Has anyone heard swishing with coconut oil for 20 mins to prevent mouth sores? I have a friend who did this and she swears it helped. I have two prescription meds for anti nausea as well as some that will go in at infusion. Did any of you take the meds on the following days even if you did not feel nausea as a preventive meds? I know the zofran I don't take till day 3.

    So that is it for now, I want to be in the loop so will read more often and support all of y'all thru this battle!

    Cheryl from AZ

  • anx789
    anx789 Member Posts: 241

    Hi Cheryl, my first infusion was 12/5, I took the steroids but haven’t taken the Zofran tablets, so far no nausea but I feel sick. I have to take Benadryl for the last 3 days due to red and swollen face. Today is a better day than yesterday

  • nanette7fl
    nanette7fl Member Posts: 412

    Hi cherd and welcome. My port was sore unril the skin glue finally came off (I'm allergic to adhesives). I had a ton of bruising too...it's not a very gentle process of instaling it. The soreness should be passing soon. Swishing with coconut oil yes my adult daughter tried it for sore gums and you have to do it for about 20 min daily and she said on the 3rd day "I give up it feels like it just 'grows' in your mouth!" Its called pushing or pulling and there's some good articles out there abiut how to do it.

    Good luck on your infusion tomorrow. . Well actually today... trry to keep hydrated as I saw a woman who sat next to me get told she couldn't have her infusion because her port wasn't working properly because of it and she had to go back in a week to get saline and the the next day would be her therapy..

    Darned if we do and darned if we don't. ..sigh

  • tcja
    tcja Member Posts: 1

    hello ladies. I had my first treatment last Thursday. I was fine Friday... until the Neulasta shot. I woke up late Friday night with chills and aches. I did take Claritin. I was down for the count on Saturday... I feel back to normal (my new normal) today.

  • lilliangish
    lilliangish Member Posts: 54

    Hello everybody!

    Day 8 here and I'm feeling good finally. No SEs and a fair amount of energy. Went to the oncologist today who said my white cell count rebounded wonderfully. Hopefully the next two weeks before my next treatment are uneventful.

    Cheryl, I don't have a port so I can't answer that question. I didn't use anything special on my mouth but didn't have mouth sores. I didn't take the nausea pills as I didn't have nausea. My onc said to try to use the power of my mind for strength. Don't assume there will be side effects...assume there won’t be. React quickly when things start.

    Worst problems were constipation, fatigue, headache and bone pain at night (that stopped on day 6). Felt like I had the flu all week. Next treatment cycle I’ll be more prepared on the constipation and bone pain thing. I’ll be taking Claritin longer than 4 days. More exercise if I can muster it.

    Water, light meals, walking every day, organic prune juice and just sleeping when I was tired were my biggest tools to feeling better.


    And my dogs, who seem to know I’m sick and never leave my side. They give me such comfort.

  • anx789
    anx789 Member Posts: 241

    LillianGish, I am glad to hear that you are doing great. Today is day 6 for me, and i can say its better than yesterday. So far the worst day is day 4. Aside from steroid via IV do you also take steroid pill? If you do, how much to you take and how often?

  • lilliangish
    lilliangish Member Posts: 54

    Anxiouslady, yay you’re coming out of it! I also started to feel better on day 6. And yeah, day 4 was awful.

    I took steroid pills in supplement to the treatment. The generic for decadron (dexamethasone). My pills are 4 mg tablets. On the day before treatment, I took 2 in the morning and 2 in the afternoon, making sure to take them before 2 pm so I could sleep that night. I didn’t take them on the day of treatment. On the day after treatment, again 2 in the morning and 2 again before 2 pm. On the next day I took one pill in the morning. Always with food. That was it.

    Had some trouble falling asleep the first night but Ativan helped. Decided if I didn’t fall asleep I would organize my closet...took the stress of waiting to fall asleep away. :)

    Really glad you’re feeling better.

  • moderators
    moderators Posts: 8,739

    Welcome, tcja! We're glad you've found this community, and hope it can be a source of support for you as you continue treatment. And we're so glad to hear you're feeling better, we hope you continue to feel well!

    The Mods

  • phlorada
    phlorada Member Posts: 9

    Hi all! I just found out I am starting ACT Wednesday! I am trying to absorb all info here but I overwhelmed. The nurses said I would get some medicines IV..and sent me scripts of Zofran and Riopan (?) antacid..can anyone help with what I can do tomorrow to prep..I didn't find out until the end of my appointment I would be starting so soon and no one knew the plan until the end of the appointment so everything was hypothetical...excuse typos, long day :)

    Thank you!!

  • missouricatlady
    missouricatlady Member Posts: 894

    InsideOut2 - great advice - thank you.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    BTW there are some good products available on amazon for icing hands and feet. Socks with icepacks inside them, & freezable mittens, that worked great for me. I also used cold caps from amazon, that were designed for migraine sufferers. They do not stay cold that long so you need several to rotate, but I think they worked decently and were pretty cheap.

    I did not use the caps on chemo #1, and most of my hair did fall out, but I used them for chemos 2-6, and I have now got a solid five o'clock shadow of new hair all over my head-- only 2 weeks after my last chemo. I was concerned about maybe being one of the people whose hair does not grow back after Taxotere and I am happy to see that isn't the case. I think the cold caps were useful to reducing damage to my hair.

    The best news I can share is that my tumors have shrunk away to (apparently) zero. Surgery will be the final word... but imaging looks great. This is the light at the end of the tunnel that it is important to keep your mind on!! Dead tumors! Visualize your immune system breaking down those tumors. I had sensations in the tumor area that felt sorty of fizzy/burn-y... so I imagined the fizziness eating away at the cancer like an alka seltzer. I imagined my body battling to kill those cancer cells.

    Another thing I will recommend: if your tumor is palpable, you can put heat on it. High heat (~109) kills/damages cancer cells, but not healthy cells. When subjected to heat the cancer cells give off "heat shock protein" which makes the cancer more identifiable to your immune system. You might get superficial burns (I did - BRIGHT pink) but those will go away. I used a very-hot hot water bottle. I love a 105 degree hot tub, so I went to a heat that was hard to tolerate. You can read about Hyperthermia for cancer... I did this a few times a week, for about an hour each time. My tumor and lymph node were right at the surface of my skin so I know they were heated. I also put a heating pad on during the infusions, to bring that chemo laced blood right to the area of my body that needed it. I am not positive it helped but it helped me mentally to try it.

    Hang in there!! You are strong and you can prevail!




  • nanette7fl
    nanette7fl Member Posts: 412

    metallic taste and poor appetite? I have developed a TERRIBLE awful metallic taste in my mouth. I'm sure it's why I have such a crummy appetite today. Yesterday I wasn't very hungry either. I know I need to eat and try to make myself eat... When my sweet GP told me her 'other ladies' (her BC patients) at times said it was like being pregnant again kind of describes me lately.

    Has/does anyone else have this or is it just the combo of Taxol/Herceptin??

  • Christine1975
    Christine1975 Member Posts: 23

    Hello beautiful ladies! I hope it's okay if i jump in and join this thread. Just found out today I'll be starting chemo on Friday. My Oncotype came back at 38, so it really wasn't much of a choice. I am feeling a bit overwhelmed since I only have a few days to prepare. I wasn't expecting everything to move so quickly. I was waiting, waiting, waiting for my Oncotype test results then BOOM, all of a sudden I'm starting chemo in 3 days! Anyone else have a short turnaround time to get ready? Maybe this is for the best so I'll have less time to worry and fret.

    I *think* I will be doing TC for 6 cycles, but my MO is calling me later today and I will know for sure. She talked about AC/Taxol but my heart has been damaged due to anorexia nervosa that I've struggled with for 15 years. I am thinking that means TC would be a better choice for me. I have my 'chemo teaching' tomorrow morning and my mind is swirling with so many questions.

    I have long hair, so one of the first things I'm doing it cutting it shorter; then it won't be such a huge shock and adjustment. I have a wonderful supportive husband and 3 teenage boys at home who surround me with love and humor.

    I am so glad I have this forum for support - this is the only place I feel I can truly connect with others who are going through the same thing as I am. Everyone here is so genuine and supportive, so I'm absolutely thankful to have this site. I'll plan to update as I go through this journey and look forward to reading all of your updates, too. Let's lean on each other during this challenge - we can all do this!!!! Lots of hugs to everyone!!!

  • mcbaker
    mcbaker Member Posts: 1,838

    Just re-read stuff on the patient portal and got a better understanding of what is going on. HER2+ is so wicked that a 10% recurrence rate is nothing to be sneezed at. Echocardiogram early Thursday morning, small town near here, OT on Friday in town for some kind of tendon involvement in my right shoulder. Blood draw Monday morning and plastic surgeon appt in the city. Patient education Tuesday morning, and port installation in the afternoon in the city. Wednesday meet with onco and get first infusion in the city. Routine chiro appt in town on Thursday, and we can discuss posture and equal weight hanging off both sides of my chest. I am just eager for this whole thing to settle down to a routine, instead of running to LaCrosse every day. I have to go to the city the day after Christmas, too, for an infusion. Hopefully a spot in the infusion clinic in town will open up for me quickly.

    Nanette, I will tell you next week if it does that for me. Somewhere in the recommended reading, it suggests using plastic spoons and forks.

    Went roaming, and I am crocheting a cap from http://www.knotsoflove.org/patterns . My cousin is sending me some of her caps that she used two years ago. The one I am doing is in grey and silver yarn, I am quieter, I imagine I will have fun with some from her package, but I need to express myself.

    People have looked at my curls and asked me if that is chemo hair. I laugh and say no. Likely it will get even curlier later.

  • phlorada
    phlorada Member Posts: 9

    HI Ladies!

    I my first chemo tmrw and I just found out Monday! I understand your quick turnaround Christine1975 . There are many good answers to what to buy in the chemo section.

    I too have to travel far for my appointments and infusion so I understand your pain MCBaker...I hope you get a seat in the closer center.

    nannette7fl ...definitely try plastic silverware. My friend swears by it for the metallic taste!

    santabarbarian WOW!!! I need to read more about fasting and I am bring my heating pad to my infusion as I have a large tumor. And I love the visualization idea!!! Thank you!

    Can anyone tell me what I to expect the first day or two on AC&T? Or direct to info on the Boards?

    Thank you!!!

  • nanette7fl
    nanette7fl Member Posts: 412

    Fast turn around times makes your head spin. After my 1st core biopsy things went flying. So many things to do as far as testings and Dr visits and financial discussions with WAY too many people. 2 months after my failed mammogram to my 1st chemo/herceptin treatment. Now that things are 'slowing' down I'm taking this time to digest all the information I was given and trying to learn about the next steps.WHEW!!

    Thanks for the suggestions about using plastic ware and I'll try it tomorrow.

    My poor DH came home again today and asked me those 2 questions I so hate to hear ...."Honey is there anything wrong?? Are you feeling ok?" "No dear nothing is wrong other than I have to take a pill so I can eat something and to keep it down and then later I get to take another pill because I ate." I feel badly for him I really do but right now IF you don't want to know the answer....DON'T ASK.............sigh...........I'm not going to say it again to him tomorrow. I'll come up with something different just to blow his mind. I know he's worried.....I'M worried. His mother, my MIL died 5 months ago from kidney failure and Alzheimer's and I know that's weighing on him too as MIL lived with us for the past 15 years..

    phlorada chemo #1 wasn't too bad.....the SE come and go... you should have gotten an info packet at your education class and those papers are great (well mine were)

    santabarbarian I too visualize a lot and have used the power of my mind to over come or lessen many things over my lifetime. I really believe in the power of our minds in healing our bodies.......and of course in the medications God gave man the ingenuity to discover/create. Lately my mind has been seeing my BC like a pacman game ..... Pacman is the taxol/herceptin eating up all those cancer cells and those ghosts are my side effects......and I'm trying to evade them lol

    Welcome to the newbies lol and of course feel free to just jump in christine1975 8)

    I have an 'extra' day off this week before chemo because my chemo schedule was readjusted to Thursdays starting this week due to Christmas and New Years

  • Christine1975
    Christine1975 Member Posts: 23

    I love the PacMan analogy, Nanette!

    Thank you all for making me feel so welcome on this forum! I have my chemo education this morning, then heading to my parents' for our annual day of Christmas candy-making! I am hoping to squeeze in a few 'fun' things from now until Friday before my first chemo. Not knowing how I'm going to feel after treatment is the hardest part right now. I think I'll feel more settled after the first round, just knowing what SE to expect and how to handle them. I picked up my prescriptions yesterday.....2 nausea meds and a steroid. Reality is setting in.

    Hope all of you ladies have a wonderful day and feel well!!! Talk to you all soon! Hugs!

  • mcbaker
    mcbaker Member Posts: 1,838

    I got home from Mass yesterday, the pharmacy had called asking why I had not picked up my prescriptions. I called back telling them I would be picking them up this morning. Procrastination is sweet, but not healthy.

  • LizzieBo
    LizzieBo Member Posts: 26

    MCBaker - I hear you. I’m in the November group. I don’t want to do any of this either. My advice to my children about homework/cat litter/dirty dishes etc was that they didn’t have ave to enjoy it, they just had to do it. So I’m taking my own advice. My mother ignored her colon cancer (plenty of symptoms) until it was stage four. She had five grand children born just before and just after she died (I was seven months pregnant with my third when she died). She’s never got to really enjoy them. I’m 56 and my oldest is 20 so I need to hang in there. I figure just doing the best I can is my version of fighting. Good luck doing the

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