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Starting chemo January 2018

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Comments

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited February 2018

    Yes! Exercise is the salvage of this mess. I can't get my heart rate up too high, and have to stop and catch my breath from time to time, but got to nordic ski up Teton Canyon with my best friend and my 4-month-old puppy, both of whom are sweethearts. Helped me to forget my Saturday of almost-puking all day.

    image

  • krose53
    krose53 Member Posts: 74
    edited February 2018

    Homemadesalsa, so impressed with your ski trip.

    On Day 5 after my second round of chemo, I started getting flu symptoms. I has hospitalized for 3 days on days 8,9 and 10. I still feel incredibly tired and weak. My flu symptoms are almost gone. I start Chemo round 3 on Monday the 5th. Anyone else going through this? Last time I felt great after Day 9. I'm nervous that chemo is coming up so soon. Any ideas to improve my energy before round 3. I'm pretty tired after climbing a flight of stairs.

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    Way to go, Homemadesalsa! We always go on a ski trip during March break, but won't this year. I go on the weekends, but I don't last long. Better than nothing, I guess.

    @Krose53 - I'm on Day 5 and have been having flu-like symptoms since my third infusion. Or maybe it is the real deal, I don't know. I am coughing (although that improved) and sneezing, but no fever. What made you go to the hospital? I am wondering if I should go. My appetite is good, but feeling dehydrated so I keep drinking a lot of water, and unfortunately carbonated drinks like Limonatta and Orangina which I reaLly crave. We'll see........

  • krose53
    krose53 Member Posts: 74
    edited February 2018

    Hi Roxy13, my husband had gone to the ER with flu symptoms on the Sunday before I went. He had a fever of 103.5 and was diagnosed with Influenza A. I was has having fatigue, coughing,headache etc but on Tuesday I took my temp and it was 101. According to my nurse navigator, a temp over 100.5 is an ER visit. They found I had what looked to be the beginning of pneumonia on a chest X-ray and diagnosed with Influenza A. I'd definitely give my nurse navigator or MO a call. This flu can really wipe you out.

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    Ding ding ding! Flu symptoms here! Just when I was excited about having those wbcs up to 14k I was wiped out with the nastiest cough I've ever had. No fever (or just a low low grade one). I've been housebound for a week so can't really comment on fatigue (I'm always running around the house doing something and seem to be fine).

    What do they do for the flu anyhow?

    Roxy - for my upper respiratory infection (that was Sunday) I was put on antibiotics and given a whole bunch of things (throat disinfecting spray, codeine for the cough at night (doesn't help) and I do aerosols of light steroids and saline for moisture) Even if it is viral, a round of antibs in our case could probably be a good idea just to prevent things from getting nasty.

    I'm supposed to do last round of EC on Monday. I'm praying it isn't postponed.

    Roxy and Krose - To bulk up the immune system I would think that vitamin D, fish oil (up to 5g per day) and the usual vitamin C in massive doses should help.

    Keep in mind, our immune systems are shot to hell. What would be a normal cough in someone healthy can be pretty devastating to us.

    Homemadesalsa -- what I wouldn't give to be in the clean outdoors! Enjoy your walks and keeping up with puppy!!!


  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    Thank you for the advice, KRose and Amelia. I had a good night sleep and feeling better this am, so hoping it resoved itself.

    Can we take high-dose Vitamin C while doing chemo? I have to say I’m very confused as to which Vitamins interfere with the chemo, and I stopped taking them altogether. I’m just taking an iron supplement and the probiotics, which I think work, because my stomach felt better this time around.

    Hugs, ladies!


  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    Fingers crossed for Monday, Amelia!

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    From what I've understood with supplements, is yes, during chemo less is better than more. There had been various trials of antioxidants during chemo and whether or not they interfered or worse, made chemo counterproductive, but from the recent years it seems that they are ok a few days out of chemo (3-5). I have some concoctions that are antioxidant that were prescribed by a nutritionist and they are all to start up a few days out of infusion.

    I don't recall seeing anything against Vitamin D or fish oil during chemo -- then again, maybe I just didn't read it. Both are very helpful in beefing up the immune system.

    Can I be really honest with you all -- I am actually scared of getting pneumonia and dropping dead from it. I'm not obsessing or anything, but the thought has crossed my mind more than once. But even if it were pneumonia what would they give me? antibiotics, right?

  • paisley2916
    paisley2916 Member Posts: 55
    edited February 2018

    Hi All! Going in this morning for my last AC!!! Yay! Taxol will be next - Boo! Can't wait to be all done with all of this!

    I'm going to ask my MO today about any certain vitamins I should be taking. I'm always weary of looking things up on the internet, because there are so many conflicting things and I never know if it will interfere with the chemo drugs. I'll let you all know what he says so you can compare notes with your info.

    Amelia01 - I'm also paranoid about getting sick during chemo. I haven't done any shopping - my husband doesn't want me to so he does it all. I'm staying out of public places except for my doctor appointments. So far, so good! I think they would give you antibiotics and possibly - if needed a blood transfusion. My mom's friend has BC right now and ended up in the hospital for 4 days from a sinus infection. She ended up with two blood transfusions becuase her counts were so low that she couldn't fight anythign off. From my understanding, the blood transfusion gives the higher rbc, wbc, etc to be able to fight off infections if the antibiotics don't do the trick. Good luck today!

    Wishing everyone a feel good week!

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    fingers crossed for you Paisley that the 4th is a breeze!!!

  • okkate75
    okkate75 Member Posts: 75
    edited February 2018

    Hello, fellow flu sufferers! I was diagnosed with the flu a few days out from my second round of TC, and it was the worst. I've never experienced a cough like that, and the fatigue was super intense. I was afraid I would get pneumonia and die, which wasn't a great feeling, to put it lightly. I write a column in my local alt weekly newspaper and wrote about it here, if you're interested.

    I was still weak for my third round, two weeks ago Friday. It was really scary, but I am finally over the flu after a lot of rest and fluids, and I'm back to having some good days. I went out for a five mile walk today in the sunshine, and it felt amazing! I thought I'd feel run over by the flu forever, and I'm happy to report I do FINALLY feel better. I hope you all do soon as well! My tips: rest, water, rest, water, more water, rest. I think getting the flu on top of chemo is a very, very cruel trick.

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    okkate75- glad you are feeling so much better - finally! I read your article. It was great. I too used the olympics as something to get excited about while waiting to feel better and distract me from cancer. Hope the rest of your chemo is easy sailing from here.


  • Mahteacher
    Mahteacher Member Posts: 6
    edited February 2018

    Hello all. I follow everyone but rarely post. I am gearing up for my 3rd round of TC on Friday. I have been off work since November. I am a teacher and am glad I decided to recover at home. This year has been awful for the flu. Does anyone else just feel awful for about a week after TC? I am so fatigued it isn't even funny. But somedays I just want to jump out of my skin. Do you all take anything for the bone pain? Thanks and thinking of all.

  • paisley2916
    paisley2916 Member Posts: 55
    edited February 2018

    Hello Ladies! I had my 4th and final round of AC today!!! Yay! Still have 12 Taxols ahead of me, but I get 3 weeks off between now and then! I've been dose dense - so the extra week will be a dream! I bet I'll almost feel normal! I plan on using that third week as a vacation type of FUN week! It feels like a gift an I am going to enjoy! Of course I'm paranoid about getting the flu or anything else, so I'll have my fun within reason!

    Nausea is starting to set in and I'm super emotional. For some reason after AC, I get really emotional for 3 or so days. It's annoying. I hate crying. I never cry and now I'll cry at the stupidest things! Oh well....this too shall pass. Tomorrow will be the Neulasta shot and I have been really lucky with barely any side effects from it. I take Claritin the day before, the day of, and the day after and that does the trick. Just my shoulder/back muscles get a tiny bit sore. Going to try to stay ahead of the constipation this time - it's always a problem - but this too shall pass! WinkingLOL!

    Okkate - I'm soooo happy to hear you are feeling better. It must have been miserable and scary at the same time. Wow - 5 miles! You go girl!!!

    I asked my MO today about vitamins. He said it's ok to take a multi-vitamin - just watch the iron because it can add to the constipation. Going to start taking one tonight.

    I also asked him if there was anything I could do to try to keep my counts up (rbc, wbc, etc.) I'm worried when Taxol starts and my body never gets a break since it'll be weekly - I don't want to have any treatments delayed. He said the only thing I can do is to eat healty, exercise, and try not to get sick. No Nuelasta during Taxol to boost counts. If they get to low - they delay treatment....

    As I type away here with - my steroid saturated fingers - I just feel the need to say how with this total nightmare going on in my life, I am surprised at how often I've thought of how lucky I am and how grateful I am. I'm so lucky to have such supportive family and friends. They call and text to check up on me. They bring me frozen dinners without me asking. They go to chemo with me. And most of all - my husband. I'm so grateful to have him in my life. He doesn't feel like he's doing much because he can't physically make me feel better, but he has no idea how much he helps me. He has taken up the slack with cleaning when I can't. He does all of the shopping because he doesn't want me to go to the germy stores and get sick. He's gone to all of my doctor appointments with me (except chemo because he has to work - but he went to the first one and will go to my first Taxol one with me). He's patient and understanding when I have an emotional meltdown. He keeps the kids occupied when I need a break. He's never complained once. Not one time. I'm truly one lucky woman!

  • rockcity
    rockcity Member Posts: 155
    edited March 2018

    Paisley2916- congrats on finishing the last AC. Enjoy that extra week. Sounds like you have amazing family and friends. It makes such a big difference.

    Mahteacher- for bone pain from the Neulesta shot, try regular Claritin once a day and Tylenol or Motrin if needed. It seems to help most people on this site. I’m not on your chemo regimine, but a week of fatigue sounds normal. Call your MO if you are concerned. They can give you some advice or determine if they want to see you. Hope you feel better soon

  • Mahteacher
    Mahteacher Member Posts: 6
    edited March 2018

    Rockcity, thank you!

  • Mahteacher
    Mahteacher Member Posts: 6
    edited March 2018

    Thank you Rockcity!

  • insideout2
    insideout2 Member Posts: 108
    edited March 2018

    Welcome to those who have recently joined this group. You will find so much support here.

    I was reading the updates and time has passed. I noticed some are finishing their chemo or completing their first leg of their chemo plan. We are getting the job done.

    I increased the intensity of my exercise, still not where some of our fellow team is, but I learned a little sweat never hurts.

    Wishing everyone a day better than yesterday.

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    My 2y.o and I watch and dance to really cool dance youtube videos, choreographed by Kyle Hanagami.

    Keeps me in shape and happy:))


    My skin over the port and catheter is all bruised.. Its day 18 since insertion. The dressing has been removed 2 days ago.

    I wonder if it's normal. I'm hoping it's a normal healing process, as the bruise somewhat greenish. Did anybody have the same situation with their port?

    THanks.

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    My pharmacist told me to avoid vitamin E or fish oil as it has blood thinning properties. vitamin D is allowed during chemo, as it doesn't interfere with anything.

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    I had a pharmacist from my cancer centre come to my chemo chair during the first infusion (hospital protocol, I guess) who told me that a multi- itami. Is ok, but to stop all supplements.

    I, like any sucker in my demographic, have a cupboard full of items such as Baobab powder, Chaga mushroom, maca, camu powder etc. I stopped adding them to my smoothies, but tbh I didn’t get the impression that the pharmacist had done much research on what interferes with chemo and what doesn’t or what may boost the results. The studies change, so it’s probably just easier for them to tell us to stop taking additional stuff. I guess once we are done our chemo, they figure we are on our own, so we can do whatever.

    Which leads me to my next question: are you ladies seeing other healthcare providers during the treatment? Like nutritionists, naturopaths, etc.? (I still haven’t mustered the courage to go for a colonic, Amelia :))I’m ambivalent. Part of me, the rational side, is skeptical, but the side that’s been made gullible and vulnerable by cancer is wondering whether I’m too quick to discard these options.

    As always, would appreciate your thoughts!

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    @Roxy13 I am seeing an acupuncturist, and was before The Cancer. I love it, and it totally helps me with anxiety, sleeplessness, and other side effects.

    To those who cry for the first days after chemo, me too! Days 3-6 are my teariest. I am a crier in general, but wow, I cry a lot in the days after chemo!

    I feel like the biggest side effect I'm managing now is with my GI system. I go from constipation to loose stools in the first ten days after infusion, and my system is getting really tired of it!

    My last infusion is next week, and then to radiation. My oncologist wants to discuss ovarian suppression/removal and an aromatase inhibitor rather than tamoxifen. Anybody else having this conversation? I'm anxious about the side effects of early menopause (I'm 42). I wish my tumor was less aggressive! What a jerk.

  • erob321
    erob321 Member Posts: 59
    edited March 2018

    oleysa- my port was bruised for a long time(yellow greenish) it still hurts from time to time and I’ve had it almost 2 months. It’s funny how much advice can change from dr to dr... mine recommended vitamin e lotion, but I guess I’m not ingesting it, so it’s different than applying it topically.

    I was told as well no vitamin c supplements or black cohosh, but not much else. Maybe it depends on the chemo you’re getting, or maybe they have no idea either!

    Sometimes I feel like a guinea pig with all this, but I’m reading a book called The Emporer of all Maladies, and it discusses the history of cancer and the real women who went before us. Really puts things in perspective (I’m glad I have cancer now and not in 1950!

  • erob321
    erob321 Member Posts: 59
    edited March 2018

    okkate- you’re not alone with the emotions, I just had a cry fest about an hour ago and I’m not really a crier.

    Good luck with the days ahead ladies!!

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    I haven't had the official Tamoxifen talk, Okkate75, but my MO mentioned that it will be Tamoxifen until I hit menopause, then AI. They expect I will hit menopause in 2 years or so, since I'm 47. Well, 48 in April. He never said anything about removing my ovaries, and my understanding is that this won't be necessary since I'm BRCA negative, which means lower risk of ovarian cancer. Why would they suggest this to you? Is it the Tamoxifen side effects? Also, wondering what makes your cancer so aggressive. Is it your PR negative status? I'm only 5% PR positive, which means higher risk of recurrence. Probably the only reason I'm doing chemo. I didn't even do the oncotype test, which I expect would have been high.

    Eh, more fun on the horizon. At least we'll get our hair back.

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    @erob321, I also read The Emperor of All Maladies. Loved it. They also made a documentary on PBS (by Ken Burns). I watched it too and cried throughout most of it, and I'm not a crier. :) The book also inspired me to get The Art of War. There was a quote there from Sun Tsu. I figured I need to learn all strategies to win not the battle with cancer, but the war :)

  • Mahteacher
    Mahteacher Member Posts: 6
    edited March 2018

    Okkate...my MO mentioned ovary removal as well but the genetic counselor said since I had just a variance in the BRACA gene she wouldn't. I'll be on Tamoxifen for five years after my last treatment, March 23rd. My wife and I are going to ask about it tomorrow again. Keep us posted on your further discussions.

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Erob321 - thanks for letting me know that it's nothing of ordinary... i did call my oncologist. they don't seem too concerned....


    also i cannot imagine to have cancer in 1950... i was just talking to my mom, telling her that, yes, cancer is scary, it can spread, and ultimately kill you. However the aggressive approach of treatment with all these intrusive, invasive, uncomfortable and painful procedures sometimes feels worse than cancer itself...

    Roxy13 _ i am seeing a naturopath, a chiropractor, a reiki master, an electric homeopath, and counselor. And I really want to go to the swimming pool, yoga and gym, but scared of germs lol:) I find/hope that all this complementary medicine helps me to stay strong, and recover from side effects faster.

    Okkate75 - I had to laugh, and then friendly and respectfully tell you to shut up(sorry):)), because I am 34 and facing 5 years of Tamoxifen with all the side effects of early menopause LOL It sucks! I am taking monthly shots of Lupron in order to somewhat protect my ovaries. and hot flashes are not a joke....

    Want to ask my oncologist if it's worth to keep taking Lupron to the end of Herceptin treatment(total of 18 rounds-i had 2 in 3 weeks spin),and then go straight on Tamoxifen without a brake. or should I get off the Lupron for 10 month, only to have my body to recover for a bit and then go again on a menopause....Oh the joys....

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    I love that we're all reading Empire of Maladies--I did too! And cried through the television series. Sigh.

    My oncologist mentioned the SOFT study and its suggestion that ovarian suppression and AIs show better results than tamoxifen alone for some women. We'll talk more about it at my appointment next Friday. @Roxy13--yep, the PR negative is why I'm doing chemo and likely why they want me AIs. Ugh.

    @Olesya Glad I gave you a laugh and a shut up moment! 42 is still young in my book! And removing my ovaries for good feels pretty drastic and scary to me. Sorry you have to do all this crap too, and earlier.

  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    This is my list of things I can take during chemo and after according to my holistic oncologist (who is also a radiologist, breast surgeon and traditional oncologist)

    Moringa

    Ashwagandha (highly recommends)

    Ellagic acid

    Glutamine

    Zeolite (check your source)

    Omega 3 / fish oil

    Vitamin D

    Alpha lipoic acid (high recommends)

    Vitamin E

    Tumeric (can interfere with some chemo)

    Aspirin (I'm doing 300mg)

    Selenium (after chemo)


    I can also start up Biotin for my hair ---


    We didn't go through each and every supplement on the market but she went through my list and approved these. I didn't ask about mushrooms, that will be for another visit. I have chosen to do less rather than more while doing chemo so have stuck with the fat solubles and Zeolite for a few days starting day 2 post chemo.

    I'm in for Monday for last round of EC!!!! I do hope I am allowed to go ahead. My coughing is still pretty annoying and this was supposed to be my get things done for next week, week....


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