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Starting Chemo December 2020

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  • RabbitHead
    RabbitHead Member Posts: 6
    edited January 2021
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    Hi Nicole and Julie! Sounds like we are on the same plan. This second week after chemo I have felt like my old self again.... this is definitely doable if I just have a few rough days right after treatment. I talked with the doc about that first night and they are going to change up the meds for the next infusion (on Tuesday). And, on a other positive note, I had a weird “mole” thing that had popped up on my arm in July. One dose of chemo and I disappeared. I’m going to tell myself that’s how I know it is working! Woohoo! Anybody else experience something like that?

    one last thought.... I went in for bloodwork between infusions and my WBC and ANC counts were super low doc said to have some bone broth to help with boosting numbers. To those of you that don’t know, Pho soup is a delicious Vietnamese beef bone broth-based soup. It has rice noodles, bean sprouts, onions, basil, and cilantro. You can customize it how you wish.If you’re having issues but need to get some goodness in your tummy, try a beef pho from your local Vietnamese place Yum!

    Hope everyone had a safe and happy break over the holidays!

  • JoW888
    JoW888 Member Posts: 22
    edited January 2021
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    Hi RabbitHead,

    I'm from the November 2020 chemo group. Thanks for sharing the tip about bone broth soup. I love Pho noodle soup but the closest is an hour's drive, so I will see if our grocery store sells just the bone broth. I'm receiving 4 rounds of TC and my 3rd infusion is tomorrow. I've received my blood test results for tomorrow and my ANC has dropped to a 2.0. I know that is low. I'm getting worried. Do you know whether you will be able to go ahead with the infusion without any meds like Neulasta?

    Take care,

    Jo

  • Gryffy38
    Gryffy38 Member Posts: 12
    edited January 2021
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    Hi All,

    I started AC on December 30th and it is comforting to read others having similar issues I am. I was super nauseous the first night. Have been dealing with nausea daily, kind of feels like a wicked hangover. Meds help but nothing takes it away completely. Also headaches that are untouchable. 3 more to go! This is my last really big hurdle with this journey. I have done 12 weeks of taxol and had a double mastectomy (still recovering from that).

    Hugs to all!

    Mass girls...I went to MGH for surgery!

  • RabbitHead
    RabbitHead Member Posts: 6
    edited January 2021
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    Hi Jo!

    My numbers dropped terribly low even after neulasta. They were so bad that doc put me on preventive antibiotics. That said, you can probably find bone broth in your local grocery store near the regular broth items. If you have an Asian grocery nearby, you might look in there for Pho soup or broth. Either way, you are so close.... just focus on getting through the first week and take it one day at a time. The second week is much better.

  • onemorething
    onemorething Member Posts: 1
    edited January 2021
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    First post here. I started chemo on December 10, every 3 weeks, Dox/taxotere, 6 sessions. Completed 2nd infustion on new years eve. Fatique is a big factor for me. This is the first week that I have felt any level of energy. Can't seem to force myself to move. Complete inertia. Nurse navigator has not been very helpful, not sure what to do about it.

    Sorry for the negative rant but I am feeling generally overwhelmed.

  • DogsNhorses
    DogsNhorses Member Posts: 6
    edited January 2021
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    Hi onemorething,

    Sorry to hear the fatigue is hitting so hard. Is it just this second time, or did you have it the first time too? And could you ask for a different nurse navigator (when you're up to it)? If you aren't supported, you might be able to get a better match?

    I've tried sleeping pills to get more rest, naps when needed, and light exercise (even when I really didn't feel like it, like stretching and walking). Although it takes me at least a week of heavy fatigue and another week before feeling fine, it gets better again. I keep reminding myself my body is fighting hard and needs rest and it will all pass eventually, but I know the feeling of being tired of being tired!

  • Jenni044
    Jenni044 Member Posts: 1
    edited January 2021
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    I started chemo on dec 18, I just had my second AC cycle a few days ago. For me, days 1-3 are the worst with nausea/fatigue/headaches. Starting day 4 I start feeling better and better, although 2 weeks after my last cycle I did get some mouth sores right behind my 2 front teeth that made it hard to eat for a week. So far the worst of it allhas been the jaw/headaches I get on the first 3 days, my onco thinks it’s from my granix injections

  • denny10
    denny10 Member Posts: 421
    edited January 2021
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    Hi, I started Taxol in mid December. I had 3 infusions, the side effects were sleeplessness for a couple of days [steroids] and then fatigue . I had all my premeds for the 4th infusion, but within seconds of the chemo drip starting I had a massive allergic reaction . The nurse was still with me, as they stay with you for the first 5 minutes and stopped the drip immediately. I was given more steroids, antihistamines and oxygen , the epi-pen was at hand but I did not need adrenaline. I feel fine now, 3 days later. Apparently this happens occasionally!

    I am now awaiting permission to change to Abraxane, a similar drug but more expensive, which very rarely causes allergic reactions, fingers crossed, because I felt I could cope with this treatment.

  • sharon0706
    sharon0706 Member Posts: 80
    edited January 2021
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    Denny10, that allergic reaction sounds scary. Glad you had good care and recovered.

    I hear you re insomnia. My oncologist prescribed Ativan to help me sleep. I think a lot of chemo patients end up taking something to help them sleep. Perhaps you could ask your doctor if there's something she could prescribe to help counteract the activation that comes from the steroids? Good luck to you.
  • denny10
    denny10 Member Posts: 421
    edited January 2021
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    Thanks sharon0706, it is a bit quiet on this thread but I am hoping it is because everyone is doing as well as can be expected.

    I don't like taking 'drugs', after being treated for cancer for over 10 years, Haha!! I am reluctant to take something extra to help me sleep. I now plan to get all the things I want to do when I am having a steroid rush, then relax when the fatigue kicks in.

  • Kickcancer2020
    Kickcancer2020 Member Posts: 3
    edited January 2021
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    I'm so glad I found this group! Thank you to everyone who has posted already with helpful info on side effects and how to deal with them. I'm 52 and had my first Taxotere Carboplatin Herceptin Perjeta chemo/antibody treatment on December 30, for triple positive Stage 1, Grade 3.

    I am going into 2nd round today in a few minutes. It should be much shorter than the first round where they frontload you with 90 minutes of Herceptin and 1 hour of Perjeta. And since I'm doing the Dignicap, I was in the infusion center from 8:30 until 4PM. But thankfully everything went well and I was able to tolerate the freezing of my scalp (first 25 mins are the worst, it gets better after that). I was thankful for the warm blankets they brought me and the warm tea helped keep me warm from the inside.

    I gotta run to get ready to leave, but I want to share something I did instead of Neulasta shot when I get back online. Astragalus Root Extract brought up my very depleted WBC/neutrophils in 10 days! It's a natural supplement 2caps 3x day recommended by my naturopathic doctor who works closely with my oncology/infusion center. On her recommendation, I'm also taking Glutamine 10 grams 3 x day to reduce the risk of neuropathy. I'll take it for 7 days. Zinc to support taste and taste bud regeneration, Maitake D Fraction to support red blood cells (I was anemic going into therapy! so I also received iron infusion 7 days after 1st chemo). I drink green tea daily for anti cancer effects.

    I did fairly well after 1st treatment, but did get badly constipated, so I'm already taking Colace and will supplement with Magnesium tonight to avoid my last experience of "feeling like I was giving birth to a baby!".

    Also I just lost a good chunck of hair last night after shampooing and trying to get a mat that formed untangled. urggh! But it's not too bad.

    Stay strong and positive everyone!

  • denny10
    denny10 Member Posts: 421
    edited January 2021
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    hi kickcancer2, I hope it all went well during your 2nd round of chemo.

    Thanks for all the information about supplements, there are a couple I will be discussing with the oncology pharmacist when I next see her. I suffer with constipation and can recommend fruit smoothies, prunes and prune juice, porridge oats for breakfast.

  • Kickcancer2020
    Kickcancer2020 Member Posts: 3
    edited January 2021
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    Thank you, denny10! My second round went well, but it was again a very long session because I received a second infusion of iron (which takes 90 minutes), but I'm not complaining. The iron juice makes me feel better overall. I took Colace the day prior and the day of chemo, in the morning and the evening and this seemed to have helped not to get constipated this time. Plus I drink green organice juices. I didn't have to resort to Magnesium Milk after all. Thank you for the fruit smoothies, prune and oatmeal recommendations, denny10.

    The Astragalus Root Extract has continued to work to increase my WBC/Neutrophils. Yesterday's blood work showed Neutrophils at 13.66, so even if chemo lowers it, I should be within normal range for my next round. The way it has worked is remarkable, having gone from 0.26 to 13.66 in 12 days!

    I have started to take Glutamine to prevent neuropathy. I'll continue this for 7 days after chemo.

    Today, I have not had any stomach issues. Yay! I just don't have much energy and my brain processing is slow. I had been walking 4-5 miles every day for a week before my 2nd round, but today, I'll be happy to get to the mailbox which is only two blocks from my house.

    I don't know how to make my condition show up at the end of the text.

    Good luck to everyone in this December GROUP!

  • MsMurphy
    MsMurphy Member Posts: 32
    edited January 2021
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    Round 3 of chemo is tomorrow. Halfway there with not too horrible side effects. I've discovered a love for instant mashed potatoes and grilled chicken breast as a way to keep food in my tummy without upsetting it and have given myself permission to takelots of naps whenever I want. And even better, some of the stubble on my bald head is starting to become fuzz. Looking forward to not having a velcro head!

    Hope you are all doing well and getting through your treatments while still feeling decent.

  • denny10
    denny10 Member Posts: 421
    edited January 2021
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    Hi ,msmurphy, I think when you are having chemo you give yourself permission to do anything that you want, as long as it does not harm you or others. I remember living on baked potatoes in their jackets and tomato sandwiches, when I had chemo 14 years ago, whatever gets you through.

    I was given permission to change from Taxol to Abraxane, I now know it costs 12x more than taxol !! It has been much kinder to me and I have been able to eat and do cooking, cleaning and light exercise throughout the week. I stil have some hair left although it is very thin now, so will continue to use the cool cap during the infusion.

    Trying to take one day at a time, it is difficult, but I was called for a covid vaccination, as here in England I am deemed as extremely vulnerable. I am now adding a very sore arm to my list of complaints but hopefully this should be gone 48 hours after the jab. It lifted my spirits ,because it means I am one step nearer mixing with friends and family again, after nearly a year of quarantining myself.

    Take care everyone.

  • sharon0706
    sharon0706 Member Posts: 80
    edited January 2021
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    Hi MsMurphy. Thinking of you after your round three. That was the hardest round of TC for me for reasons which I still can't explain. Hope you will give yourself permission to nap as much as needed. ps. Great news about your hair!

  • LBARKER30
    LBARKER30 Member Posts: 3
    edited February 2021
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    Hi everyone-  I started TC - 4 rounds on Dec 21.  Just had my 3rd round Monday. Only one more to go, YAY! I cannot sleep while on the steroids.  I wake up between 2 and 3 am and cannot get back to sleep.    I have had very little in the way of nausea.  But, I do get neulasta pain even with claritin and I get myalgia pains toward the end of week one each round which I can only help out by taking motrin. I have had fatigue mostly week 1 and 2 and felt much better during week 3.

    A new symptom that started in the 2nd round was eye twitching in my right eye.  Does anyone else have this and how have you dealt with it? I have been doing eye moisturizing drops recommended from my onco.  I also just got a microwaveable compress to try. 

    I am doing the cold capping with a dignicap machine.  So far seems to be doing pretty well.  I did lose hair but most people cannot tell.  I just looks flatter from never washing it LOL, but I do get a horrible headache from it especially bad during the 2-hours you leave it on after infusion even with Tylenol.

    Lisa B

  • denny10
    denny10 Member Posts: 421
    edited February 2021
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    Hi Lisa, sorry I cannot help with any suggestions for the twitchy eye , it must be annoying.

    Are you managing to squeeze in a nap when you not sleeping well because of the steroids/ fatigue?

    As for the cold cap machine , do they put a disposable, thin 'surgeons' cap on you before the cold cap? They ran out of them once and it was worse. A towel around your neck and gauze around the edges of the cap, all minor things but everyl ittle thing that helps! I get the excruciating headache for 10 minutes, not long after the machine is switched on , then it is uncomfortable but not unbearable. I only have it on for an hour after the infusion, then it's turned off. The cap remains on until my head warms up, usually 15 minutes. My hair is like yours thin and flat, although I do wash mine, Lol :)

  • denny10
    denny10 Member Posts: 421
    edited February 2021
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    Help please, I am suffering terrible pain caused by wind/gas in my stomach and guts. I have not had this before and don't know what I can do or take to get relief. Thanks for any suggestions.

  • Maddy83f
    Maddy83f Member Posts: 78
    edited February 2021
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    Denny10. So sorry to hear you are in pain. I had trouble with constipation when I went thru chemo a year ago and have been taking both colace and Senna every day since. Definitely reach out to your doctor for suggestions.

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    I feel for you. Maybe try GasX if you haven't already?

  • mochipie
    mochipie Member Posts: 45
    edited February 2021
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    Hi there - wanted to check in. I'm on weekly Taxol and will have #10 of 12 this week. I can finally see the light at the end of the tunnel.

    The regimen has been very tolerable so far, and I have continued to hydrate and exercise throughout. Only recently have I begun to have fatigue, heartburn, nausea, neuropathy sensations, and muscle soreness, but ALL of that has been mild to date. I hope it stays that way.

    Hair loss started on day 23 for me, and continues. I've had considerable thinning, though it's difficult to tell what percent of hair is gone - maybe 80%? I started needing to wear a wig or hat by the 6th infusion. As I can still sleep without wearing a hat, I'm reluctant to shave the rest of it off (It's been buzzed to around 3/4") until it gets a bit warmer. I do plan on shaving it clean and probably risking an actual razor, but not likely until the end of chemo anyway given the winter weather.

    I'm actually having a LOT of fun with the wigs, and I didn't mind buzzing my head. I had so much anticipatory dread and stress over it, and in the end it suited my face and I have a decent head shape, and it was fine. I ordered some cosplay and novelty wigs from Etsy and I have a real wig that insurance paid for, which I haven't' even worn yet! Truth be told, I only wear the wigs for the odd Zoom meeting and on infusion days, so I haven't had many opportunities.

    I did notice the old switcheroo on my immunotherapy after treatment 5, which had me livid. I was told to research my drug regimen and was told I would get Herceptin. I had been given Kanjinti without informed consent or knowledge, and as soon as I figured it out, I insisted on Herceptin. Biosimilars may work the same way, but this was all done to cut costs, not to improve patient outcomes. I want the drug that's been proven to work and hasn't received FDA approval less than two years ago. The Herceptin is the drug that's supposed to cure me, after all.

    Anyway, soon some of us will be done with chemo, and I wish you all well as we enter into our final cycles and treatments. I'm definitely reaching a point of being tired of dealing with the side effects and being immunocompromised, though pandemic lockdowns have definitely helped me feel like the sacrifices I'm making are far less than they would have been otherwise. Good luck to everyone!

  • DogsNhorses
    DogsNhorses Member Posts: 6
    edited February 2021
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    Denny10, how's the gas, cramps going? Round 3 I got really constipated, so this 4th round I was extra careful to hydrate and move some, but ended up with gas and cramps like never before (but not constipated!) - super painful that I couldn't even breath. I just went to sit on the toilet until it passed. Which took way long. So I don't have a solution, but you're not alone...

    LBARKER - I had the eye twitching too, even skin twitching between my eyes - totally weird, but as with most things, it passes. It makes me wonder how I look like when I'm talking to my husband but he wisely doesn't joke, lol

    MochiPie - my husband likes my wig better than my own hair (and I kind of agree) - that will be promising...

    And with this I have finished my last round of TC chemo, only Herzuma left for the remainder of the year. I did get new symptoms every round, but round 4 was better than round 3 - not sure why that one was the hardest. Only thing I changed was sleeping pills - I didn't like the Lorazepam (Ativan) so wasn't taken them enough, and got stressed and lacked sleep. But now I'm on Oxazepam - it works beautifully both with sleep and anxiety without turning me into a zombie.

    For everyone - sending you warmth and kindness on this journey.



  • denny10
    denny10 Member Posts: 421
    edited February 2021
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    Thanks everyone who chipped in with their suggestions to relieve gas. It has eased, I am using a stool softener and a laxative,senna, but I need to get the dosage correct. It helps knowing that others have had similar symptoms and it's from the chemo and not something worse.

    I now have a dilemma with my hair. After 6 rounds using the cold cap with my hair thinning, my hair follicles seem to have given up over the last 2 days and my hair blocked the shower drain this morning. Next chemo is 2 days away , I still have 6 rounds left ,it may be time to forget the cold cap and get the hats, scarves and wig out !?!?

    Dogsnhorses, hurrah, you've finished, best wishes using the herzuma.

    Well done, MochiPie congatulations on keeping up your spirits with 10 of 12 rounds completed,. I hope the last two sessions are easy for you.

    Thanks again everyone, knowing there is a safe place to 'vent' helps so much. xx


  • Maddy83f
    Maddy83f Member Posts: 78
    edited February 2021
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    Denny10 - hi there - I am a year ahead of you treatment wise but thought you might like to know that I took 2 colace and 2 Senna tablets every day during chemo - and still do. if I got really constipated even with all that - I would take one more of each one evening. Drinking a lot of water definitely helps. As for hair.... I did AC/T and was told by my oncologist that I would lose my hair no matter what - do I did shave my head. I found the wig and halo to be itchy so I ended up just wearing hats - I went to headcovers.com and ordered a bunch - then returned the ones I didn't like. Winter is a good time to wear hats - I live in Columbus OH - and with the pandemic I wasn't going out much so I went with comfortable! my hair is now a thick somewhat curly 'pixie' length. over the summer when it started to come in, I just wore a baseball hat when I was out and about. Biggest impact for me was when I finally got it colored - maybe last Sept? That is when I started to recognize myself again - and I should have done it sooner. When I first got my head shaved I did avoid the mirror for a few days when I wasn't wearing a hat. Don't know if any of this helps - but I can tell you that I am feeling great. you can do this !

  • denny10
    denny10 Member Posts: 421
    edited February 2021
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    Thanks Maddy83f, I had IV chemo back in 2007, I went with the head shave then. I wore wigs when I was out, [not doing that now during the pandemic !]. My hair eventually grew back, as it was before , although it did go through some strange stages in between. I am still undecided about the cold cap tomorrow!?!




  • denny10
    denny10 Member Posts: 421
    edited February 2021
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    Hi everyone.

    I had a face to face appointment with my oncologist and he said the chemo is working. After two drug failures in a year this is such a relief.

    I used the cold cap during the last infusion, my hair is getting thinnner by the day , so that will be the last time.

    Hope you are all doing well.


  • MsMurphy
    MsMurphy Member Posts: 32
    edited April 2021
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    This has been a rather quiet thread but I wanted to check in. Hope everyone has been doing well and getting through chemo with minimal side effects. I'm at oncology today currently receiving my last round. 🥳 Just in time for my birthday. Not the best gift but one I'm still excited about nonetheless. Unfortunately I'm continuing on through the rest of the year with targeted therapy but everyone assures me it will be much better.

    For those not done yet, hang in there. There's a light at the end of the tunnel.

  • lw422
    lw422 Member Posts: 1,403
    edited April 2021
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    Hooray for the last round of chemo, MsMurphy! And a very Happy Birthday to you.

  • 5andcounting
    5andcounting Member Posts: 32
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    My 28 year old daughter is having biopsy next week. She had planned a double mastectomy in August to avoid ever having to go through this and they found the mass on MRI. I was triple negative and I am so fearful she may be as well. Do any of you have recommendations for good oncologist near Ft. Myers?