Struggling through Chemo

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  • GorgyS
    GorgyS Member Posts: 137
    edited March 14
    Today, I had my last AC. In two weeks, I'll start Paclitaxel for 12 weeks. The nurse told me that I have to celebrate finishing AC, as Paclitaxel is much easier. Let's hope she is right. I am reading all yours posts about paclitaxel and will pay attention to the side effects you experience. I think I managed the side effects of AC well with all the medication they gave me for nausea and other issues, such as steroids. I use pantoprazole for heartburn. I have insomnia, but I compensate for it with daytime naps. My oncologist told me that I can take diazepam for sleep. All the best to all of us through the journey which is definitely not easy.
  • Katie46
    Katie46 Member Posts: 200
    Hi @Gorgys, hooray on finishing AC it's a milestone! My insomnia has improved a lot on paclitaxel, and as I haven't had any reaction to it, I'm now off the dexamethasone, which has helped a lot. I have a cup of camomile tea before going to bed as well. I'm getting around 6 hours sleep now, which is pretty good for me.
  • GorgyS
    GorgyS Member Posts: 137
    Great to hear, Katie46, that your insomnia improved on paclitaxel. Six hours of sleep always worked for me too. After six months of sick leave, I am going back to work from home 100% for three months until I finish chemo. That is why I need my sleep. I do not want to fall asleep in the middle of online meetings. It would be embarrassing, and even more so if my wig were to change position or slip from my head  😂.
  • Katie46
    Katie46 Member Posts: 200
    Hi @GorgyS, I'm going to go back to work next week, starting with 2 short days a week to see how I go. I'm going into the office as there are usually only 3 of us there, and will wear a mask. 
  • GorgyS
    GorgyS Member Posts: 137
    Looking forward to hearing about your return to work experience. There are more people in my office and it is also high risk facility ( COVID and other infections) because of older vulnerable people coming to the facility for aged care programs. As I am vulnerable too, better stay away from the facility. We will see how we go. That is what my oncologist advised me. To look after myself and take it easy even when working from home. I am 64, soon 65 and it is time to slow down towards the retirement. 
  • Coastiejas
    Coastiejas Member Posts: 94
    Hi Ladies 
    @GorgyS well done on getting through the AC I hope.the paclitaxel is kinder to you. I've found it better. I was able to have my 3rd dose today after a week off my liver levels came down enough for an 80% dose so we will have to see how that goes. I've been drinking lots of water and doing some liver specific qigong. @Katie46 and @Rona I hope you are both going well ! I was able to work on Tuesday for the first time since October last year too! I am also off the dexamethasone now too ( yay!!)  :)  :)
  • Katie46
    Katie46 Member Posts: 200
    Hi @Coastiejas, glad to hear you were good to go today. I've had my 4th dose, and I'm still feeling ok, my fingernails are turning brown, and are a bit tender, but no loss of feeling or tingling, they are keeping an eye on it. But that's about it. I've worked 2 days this week and it was great to be out of the house! Hoping I continue on like this. 😀
  • Rona
    Rona Member Posts: 59
    Hey ladies, great to hear you are doing well and your liver is coping better Coastiejas.
    I have black/brown nails too Katie although they don’t hurt.
    Fatigue, dry mouth and taste are my biggest complaint……. I can’t even stand the taste of the mouth wash. I’ve lost 5 kg now as I just don’t want to eat because of the taste.
    My liver count was also bad and I’m just devastated that I have had to go to weekly infusions and treatment now another 4 weeks! Next week I was supposed to be celebrating my last ……. you girls are going to beat me at this rate 😂. I’m only receiving a third of the dose now, still get the tingles too.
    Congrats on getting back to work Coastiejas, hope you’re enjoying it. Hope you’re well received by colleagues and supported. My colleagues have gone above and beyond…… been with me my whole journey.
    Chemo again Tuesday (hopefully liver results are better) then 3 more to go……😢
  • Katie46
    Katie46 Member Posts: 200
    Hi @Rona, sorry to hear that you've had to change to the weekly infusions and prelong your treatment, but hopefully it will be kinder on your body. I have 8 more to go, and so far the side effects have been minimal and I'm generally feeling much better, although I know this might change the more infusions I get. My nails are my biggest concern at the moment, I'm hoping they don't get any worse than feeling a bit sensitive and a few of them turning brown. So far no tingling or numbness. The weekly blood tests and infusions are making me feel a bit like a pin cushion, but I don't want a port. I started working 2 days a week and it is great to be doing something normal. Hopefully you might get some taste back on the lower dose. 
  • Rona
    Rona Member Posts: 59
    Hey Katie, those nails sound a bit painful. Someone mentioned on here to try vinegar? Have you tried that or is it only about the discolouration?
    I have no hair on my body now apart from a few on my arms. I have a super smooth body 😂 and no finger prints. 
    I really shouldn’t complain after the AC treatment but having this taste is consuming. 
    I’m not on steroids either so I have no appetite.
    Yes, weekly prods aren’t great for the veins which I too am about to endure. I just can’t believe after all the sickness and other undiscribable symptoms I’ve endured I’ve been pipped at the post 😩. Guessing I need a liver to function on with after this is over 😂.
  • GorgyS
    GorgyS Member Posts: 137
    I am on the 8th day since my last AC treatment. Next week, I will begin weekly paclitaxel for  12 weeks. The side effects I am experiencing during these 8 days include extreme tiredness and hunger. I make sure to eat and rest adequately. Following advice to eat whatever I feel like and not to lose weight, I am taking full advantage of that. I discovered that people undergoing chemotherapy can consume up to 30 calories per kilogram. My limit that I have calculated is 1900 calories per day. Interestingly, despite this high-calorie intake, I have maintained the same weight since starting AC. Under normal circumstances, with my current diet, I would have gained 10 kilograms in two months for sure. I am craving bread, cheese, yogurt, and sweets. While I do manage to include fruits and vegetables, I primarily focus on what I feel like eating. I have only one coffee daily  and really enjoy it. I just deal with the side effects as they come. 
  • Katie46
    Katie46 Member Posts: 200
    Hi @GorgyS, I has extreme fatigue for about 4 days in the first week of AC, but just normal occasional tiredness on paclitaxel. I lost about 5kg on AC despite eating fairly well, and have put about 1kg back on since starting paclitaxel. My taste has improved, not 100% but better, and I can tolerate some spicey food, and coffee tastes normal again🥳
  • Katie46
    Katie46 Member Posts: 200
    Hope you are all travelling ok, and able to enjoy the long weekend 😀 
  • GorgyS
    GorgyS Member Posts: 137
    edited March 28
    No more sugar. I had my first paclitaxel on Wednesday.  Ended up having insulin injection because my blood sugar level was 20. Got the medication and followed up with my GP. I am on an immediate healthy eating plan for diabetics. I really enjoyed all the sweets that I ate during AC. My GP told me that steroids can spike sugar as well, regardless of what we eat. I also enjoy my coffee, although I still have a strange taste in my mouth. I was diagnosed as pre-diabetic 2 years ago, so it's no surprise that the blood sugar went up. Otherwise, the first paclitaxel last week went well. They gave me antihistamines prior. I have a very dry mouth since, tired but manageable. Much better than AC experience. I also went back to work from home. I really enjoyed it and already feeling mentally much better. Many online forums keep me connected. 

  • Katie46
    Katie46 Member Posts: 200
    Chemo side effects can be so random from person to person. I've now had 5 paclitaxel and still feel ok, my fingernails are giving me some minor discomfort, and I've swapped oral thrush for a mouth ulcer 🤷‍♀️, but I have much more energy and I'm enjoying being back at work 2 days a week. I met with the oncologist yesterday, my bloods are generally good, but my liver and iron are a little low, but not enough at this stage to change my dose. I'm getting hot flushes, mainly at night. But I can see the light at the end of the tunnel as the oncologist has started talking about getting me in for an appointment with the radiology team. Will be somewhere between 3-5 weeks of that.