Dose Dense ACT treatment started October 23, 2019

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Cynd724
Cynd724 Member Posts: 23
edited December 2019 in Chemotherapy - Before, During, and After

Is there anyone out there who just started the Dose Dense ACT treatment recently? I'm concerned about how I will feel each day before my next dose. I am doing everything I can to keep the side effects to a minimum but it would be helpful to know what to expect. I had my first treatment on Wednesday and so far I feel okay in that I can wake up early to get my kids to school and deal with day to day matters. However, I do not feel 100 percent. Just slightly off, maybe a little queasy but hard to explain it. I'm trying the Digni Cap during treatment. My insurance doesn't cover it but I feel it may be worth a try. If I lose my hair, I can stop and not pay for the remaining cap treatments. It was very uncomfortable because they make the cap so tight around your chin but I got through it and hope I can continue through 7 more treatments. It adds on about 3 1/2 hours to each treatment. I already had a lumpectomy and now just have to follow up with chemo for preventative reasons due to my Oncotype DX score and a micro amount of cancer cells in 1 sentinel lymph node.

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  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi Cynd724,

    I was recommended by MO to do Dose Dense ACT, but with 5% as absolute benefit. I ordered oncotype test, and waiting for the score. I plan to go for ACT if it backs intermediate or high score, I have one 3mm positive node.

    So sounds your first round went pretty well!



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  • andinw
    andinw Member Posts: 3
    edited October 2019

    I started my dose dense ACT treatment on October 16, 2019, so you are one week behind me. I felt "fine" for the first 6 days (not great, but not horrible), but whoa, day 7, I felt like I'd been hit by a truck and kinda freaked out that it might be like this for the rest of chemo! BUT.... then day 8, I felt almost completely normal! Holy cow, what a relief. I know it will get cumulatively worse, but knowing that there is a rotten day with some good days after is helpful. LIGHT!

    So far:

    Today I'm pretty sure my hair is gonna give up and come out... 14 days in. It's tingly/itchy, and the hair down under is definitely coming out, so ... probably today, but I didn't cold cap or anything... just kinda knew it would come out, so I'm focusing more on hats and scarves and I got a cute wig. I hope the cold stuff works for you!

    Things taste weird but not horrible. I've discovered soft things are nicer... pasta, pudding, bananas. I have a friend who suggests getting plastic utensils because at some point, using metal silverware was... unpleasant for her.

    I AM SO THIRSTY. Bought a 1/2 gallon jug on Amazon so I can make sure to get at least that in my system each day. Otherwise, I don't keep track that well.

    I just felt weird the first few days off steroids. I totally understand you saying it's hard to explain... it's like I'm buzzed, just this side of tipsy.

    My toes and fingers are a little tingly/numb but not too bad.

    Good luck! It's good to have someone else who is going through it at the same time. My treatment #2 is tomorrow.

    Andinw



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  • cathy67
    cathy67 Member Posts: 514
    edited October 2019

    Hi andinw,

    Thanks for the sharing, best wishes for tomorrow, and please keep posting, this is so helpful for me. I am reading other's chemo diary so I know each day what will happen!

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited October 2019

    I’m sure there’s a Starting Chemo Oct 2019 thread. There will be women there getting the same treatment protocol. I also found it helpful to read the threads from a month or two ahead of my starting month. They’re farther through the process and will have some useful tips.

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  • andinw
    andinw Member Posts: 3
    edited November 2019

    Well, it looks like day 7 of each round is just gonna be my bad day. I feel great again today on Day 8, but but yesterday, I just hibernated. Knowing this might be coming made all the difference! Knowing I would probably feel good in another day also made a huge difference. I was pretty down after round 1, but now I know I can get through it!

    Treatment 2 went smoothly. I still don't like the taste of the premeds... ew. It tastes like orange juice that's gone bad.

    I have a mild reaction to the cytoxan... my sinuses feel like they are inflamed for about an hour after treatment. The chemo parlor nurses assure me that this is pretty common, but my Dr. says she's never heard of such a thing. *insert eye roll here*

    Hair really exploded on Saturday, 3 days after second treatment. It was definitely loose before that, but the itching/tingling in my scalp was enough to rub it off on Saturday (day 4). I found that it was easier for me this time (I went through all this chemo stuff 9 years ago, too) to get the hair out dry rather than in the shower where it just STICKS to everything! Once I had most of it out, I had my husband buzz it for me. Much less traumatic than doing it in the shower like last time. I just ruffled it.

    I tend to feel really good on the steroid, but it's almost like I have a withdrawal or something when it's gone. I feel so fuzzy headed and floaty. So hard to explain. I feel like a balloon that was blown up all the way full, but now has lost some air and is all wrinkly in weird places lol.

    The Neulasta shot (or whatever biosimilar they're using) isn't as bad as it was 9 years ago. Taking Claritin is magical! Definitely works.

    Overall, feeling decent except for some heartburn. How goes it on your end?

    Andi



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  • Cynd724
    Cynd724 Member Posts: 23
    edited November 2019

    I didn't realize I had any replies until today. I had my second dose of treatment Wednesday. After the first dose, I felt a little steroid buzz and a weird yucky feeling but nothing bad and not nauseous. I felt a little tired later in the day during the first week. On day 7 after treatment day I thought I would feel worse, but I actually felt pretty good, except my lower back started to hurt. The doctor said it wasn't related, but if it happens again, I'll know that it is. Later in the day on day 8, it stopped hurting and I felt pretty normal from that day on! I take Claritin every day. I don't want to risk the bone pain. I also rinse my mouth out with baking soda and salt in warm water two to three times a day and so far no mouth sores. At my check up with the doctor, he said my white blood cell count was superb (due to the Nuelasta patch) and that I should expect to feel the same after each treatment because around day 10 is the worst for some people. He did say that as the drugs accumulate in my body, I will feel more tired but that's it. I want to believe him but we shall see. I'm still using the Digni Cap and I should know this weekend if it is working or not. I still bought a wig and a halo and hats and scarves as a back up and I feel good that I'm prepared. When I switch to Taxol halfway through, I'll ice my fingers and toes during treatment (3 hours!) to avoid neuropathy. I think this is a must. A friend told me she knows someone who only iced her fingers and now a year later, she has problems with two toes. I use an app on my phone call My Breast Cancer Coach and its a great app to keep notes in the journal. I try to write a quick note each day so that I can compare how I felt after each dose.

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  • Cynd724
    Cynd724 Member Posts: 23
    edited November 2019

    andinw did you have your last treatment on a Wednesday? Just curious because I have no idea if the Digni cap will work or not for me. I still have my hair right now but I feel I can lose it at any time during treatment. How do you get your pre-meds? Mine are through an infusion (I have a port) so curious about the "taste" you said you have from them. If I didn't have a port it would be through intravenous. I heard to take Prilosec for heartburn.

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited November 2019

    Hi Cynd,

    Dose dense AC was ten years ago for me and I did six and not four. I think that what helped me the most was getting out and walking. When I did that, it helped negate much of the weirdness of the steroids and gave me more energy. I also cycled on the weekends. Again, it helped me feel normal. Because I kept exercising, I didn't really have to rebuild my strength post chemo. It came back as soon as the effects wore off.

    You will be done early December, and then onto Taxol, hopefully finished by Valentine's Day.

    Ten years later, I am thriving with my biggest problem being balancing all my consulting projects. I did lose my hair, but that means that I now invest in a professional cut. Life is good - and it will be for you as well. - Claire

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  • Cynd724
    Cynd724 Member Posts: 23
    edited November 2019

    Thank you Claire for the good advice! Glad to hear you are doing well now.

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  • Cynd724
    Cynd724 Member Posts: 23
    edited November 2019

    Hello, just a quick note that I found an October 2019 Chemo Club Members discussion group so I will start posting there going forward. Anyone can send me a direct message if you want. Wednesday will be my 3rd dose of treatment.

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  • LisaKPisa
    LisaKPisa Member Posts: 14
    edited November 2019

    I was excited to find a thread specific to AC+T to know what I’m in for. I didn’t see too many people in October’s thread doing DD AC+T. Most seem to be on the 3 weeks apart plan.

    Good luck girls

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  • Cynd724
    Cynd724 Member Posts: 23
    edited November 2019

    We can keep this thread going. You are right, it is more targeted to anyone getting the Dose Dense ACT treatment. I just had my third dose. Let me know if anyone has questions.

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  • rnld0502
    rnld0502 Member Posts: 6
    edited November 2019

    I actually started at the end of September with AC before T. I finished the AC with no real issues besides tiredness on day 4 and 5. Then I did my first T yesterday and I’m wondering what side effects people felt. On my way home from the chemo infusion, I started feeling face tingling and then when I woke up this morning, the face tingling was gone but my hands are tingling

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  • Cynd724
    Cynd724 Member Posts: 23
    edited December 2019

    Has anyone iced their hands and toes during Taxol? Memorial Sloan Kettering has their patients using ice bags during Taxol treatments. My doctor doesn't think it is necessary for only 4 doses of Taxol. I will be getting Taxol once every 2 weeks and worried about the nail side effects.

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  • rnld0502
    rnld0502 Member Posts: 6
    edited December 2019

    I’dlove to know this too. I have my second dose of 4 on Thursday!

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  • rnld0502
    rnld0502 Member Posts: 6
    edited December 2019

    Yes mine are every 2 weeks! I have my 2nd of 4 on Thursday.

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  • rnld0502
    rnld0502 Member Posts: 6
    edited December 2019

    My doctor didn’t think it was necessary either, but I’m thinking about doing it anyway because I’m figuring it can’t hurt anything and so many people seem to recommend it.

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