Starting chemo April 2019
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Hello everyone!
April 2nd chemo start. I actually talk to the nurse the day before my first chemo. Oncotype 30. My surgeon told me not the oncologist. (Insurance delayed a few things and I thought maybe a consultation with onc but I'm not sure what happened. I just trusted my surgeon and got the port this past Friday. I hope everyone has the least amount of side effects and it all goes quick! I've met very awesome people in crazytown forum. Waiting..El stinko..I wish I knew what type of medicine, when the dosages will be so I could have prepared. Talking the day before makes it tough. All I know is oncotype 30 chemo April 2st.
Good vibes all!
Dorene
Diagnosed 12/19/18 Multifocal left breast.1.6 cm IDC. Stage 1a grade 2. Dcis super small nuclear grade 2/3.
Her 2 negative er + pr+
BMX. Pet scan showed only what was already known. Sentinal node and 3 others negative. No oncotype test on small tumor. No radiation. Soon to take al mexestane (spelling)
large family history.
Must learn the medical bio in settings.
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I think you've got it all covered! Your note cards reminded me that I have thank you cards that I need to take care of and chemo might be a great time to get that done!
Wishing you the best on Friday👍
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Hi Twelvestring60
I start on April 2nd too! I am doing 4 treatments A/C followed by 4 taxol treatments and then radiation. I am getting port tomorrow.
Sorry you have be here like the rest of us. Please update us on what treatment you will be having.
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Welcome Twelvestring60,
Glad you found this blog.
My oncotype was 33. I start TC × 4 on April 8th.
Keep us posted as you learn more.
Best,
RRB
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MsMarie, ref your to go bag, may I suggest ACT lozenges (really helps me when mouth gets dry- and chemo will dry out your sinuses to a certain level) and if your nose starts feeling dry, especially during Taxol, carry Ayr Gel with QTips to apply gently inside your nostrils plus Ocean saline nose spray. These will help if/when you get alight bloody nose from dry sinuses. I carried these everywhere during my 20 weeks of chemo
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Great tips so far thank you!
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thanks Dodgersgirl! I'll get some ACT for my AC-T, lol. I have some other brand nasal saline but never thought about gel.
Forgot to mention I am rinsing w the salt and baking soda rinse after meals. I also have a prescription fluoride toothpaste and I bought some CloSYS alcohol freeoral rinse. I also use a water pik instead of traditional flossing.
Guzzling water!
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farfalla, how was your first treatment? Thinking of you and hoping your SE are minimal.
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hi MsMarie;
So nice of you to check in! My first treatment is this afternoon, I am actually in the office this morning. Super nervous and been having anticipatory nausea, lump in my throat, and constipation! Been taking Claritin and Colace. I'll be relieved to have the first one over since dealing with side effects at least will be because I've gotten through a little part of the process, while waiting and stressing is so unproductive! Been trying to stay in a good mood for kids (teens) and DH, but DH is more down/nervous than I am.
How are you doing? I think you are starting tomorrow, and also planning to work through it? I was thinking of doing cold caps but decided on a wig, getting buzz cut next weekend.
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No firm start date yet, but I've been told will definitely be April. Pet/ct Monday morning (already had a CT, which was stable since my last one in 2017 so I'm hopeful), consult with an ENT about surgical options on the 5th, then consult on the 9th about putting my port back in (my first time with bc was in 2015, this is a regional recurrence). Still waiting on results of 2nd biopsy (which was...yeez, the 26th?) to determine if I'm still PR+ or not, but onco said taxol didn't rely on hormone status and we'll figure out the rest after the results are in.
On A/C I only had one really bad day, the 3rd. Flattened by the fatigue truck and day 3 was always my insomnia night too (because of the steriods). Don't be a hero. If insomnia grabs you, ask for something to help you sleep. I didn't the first time and have already asked (and received) my ambien this time, thank you very much, LOL. Sea bands never did anything for me, but YMMV. I swished my mouth with saltwater every time I used the bathroom (which I flushed twice) the first 2 days after my spa day (always look for a positive way to look at things, I say, LOL) and never had any mouth troubles either. On A/C, on my off weeks, I felt almost normal. It was taxol that kicked my hiney and even then, it took a while to build. I lost the ability to taste salty things, but I simply adapted my cooking to foods that didn't rely on salty flavors. We ate very well the whole 7 months I was in chemo last time. Also, Mentos mints are of the best sugar-free options, IMO.
This is hard, the hardest thing you will ever do, but it IS do-able.
Do yourself a favor...Take a spa day bag. First time, mine usually had whatever crochet project I was working on, cooking porn (recipe magazines -- I love to cook and ordered about a dozen subscriptions to help me pass the time at the cancer center), extra bottles of water and snacks for my husband, phone and tablet to read, play games or watch videos. Seemed like everyone else fell asleep during benadryl, but nope, not me, Imma weirdo. Keeping busy and yourself entertained helps. Plus, it also gives you something to talk about with others there if anyone's feeling chatty.
I'll probably go out shopping for spa-friendly clothes this weekend. I work from home (I'm an author) and can spend all the live long day in novelty t-shirts if I want. Last time, I had some breezy button-up shirts to make accessing my port easy on spa day, but I've gotten rid of those since. Yes, I have others, but I figured a few new shirts would give my confidence a boost.
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Farfalla,
Let us know how you are doing when you can, and I hope the SE are minimal!
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hi April chemo buddies
I had my first AC infusion this afternoon. No port, no problem with veins, no headache with the cytoxan. Now I’m home and have no appetite, v tired (thought I’d be revved from the steroids but tired, also was a v long day as I worked in the morning before chemo. I do feel a bit queasy already, which worries me. I was told to take olanzaoi e this evening and might take zofran also.
Relieved the first infusion is over, and happier than I was last night, but anxious to see how the side effects will be. Nurse was b encouraging about them being manageable with right meds, hope so!! I know days 3/4/5 are supposed to be the worst and I can be home those days.
Msmarie, good luck on your first treatment tomorrow
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Farfalla6 - must feel good to have one done! Keep us posted on how you do the next few days.
MsMarie - best of luck tomorrow!!
I am hoping for an easy road for us all! But we can get through this SE's or no SE's!
I find it interesting the different meds doctors prescribe for SE's for the same chemo regimen. I have been prescribed Olanzapine for nausea and to take it day 1 - 4. I also have Compazine to take if I would have vomiting or nause even with the Olanzapine. I also have a steroid to take 2x per day for three days after chemo. I also got a prescription for Prilosec 40 mg. Don't know if that is only if needed. At the time of infusion I get Aloxi, a steroid and Olanzapine to help prevent the nausea and vomiting. I have to look up Aloxi...have no clue what that is. Hopefully some of this works!!
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yikes, I had my first AC yesterday; nausea hit at 10 pm, I took my olanzapine and then Zofran at 2am. I thought I would be fine for work today but v nauseous and dizzy when I stand up. About to take my steroids/Claritin but can't imsgine putting any food in my stomach. I thought day 2 was supposed to be okay!
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Farfalla,
Makes me nervous because I am missing two days next week already (for port and chemo) and was hoping to work the rest....UGH. Take care and hope you feel better soon!
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Farfalla,
Makes me nervous because I am missing two days next week already (for port and chemo) and was hoping to work the rest....UGH. Take care and hope you feel better soon!
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well, I do tend to be a little wimpy! And I felt better within 2 hours, just that my work schedule was supposed to be 8 to 12 today. I could probably have worked this afternoon, feeling better now ( not good, but ok) especially after drinking a ton of water
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Hey Farfalla6 - glad the nausea has quelled a bit.
I plan to work through my treatment too. You are blazing the trail for us. Thanks for sharing your experiences. I heard that tons of water was a must, and to never miss a dose of Zophran. Question: did you try any of the cryotherapy (sucking on ice, or cold packs to hands/feet)?
Are you being given Neulasta prophylactically? If yes, is that injection today, or did you get it yesterday after chemo?
PrincessOfMeh - thanks for sharing your experience with us.
MsMarie - thinking of you today. Hope all goes well.
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Trailblazer! I hope so, it's so comforting to chat with others going through this. So by 10 am I felt fine (not normal exactly but functional) andI could have worked later.
I told no need to ice with AC, but they do recommend with Taxol. Protocol at memorial Sloan Kettering, where I am, is automatic neulasta day after chemo. I have that pod they attach that goes off 27 hours after chemo. I am doing tons of water and yes, zophran every 8 hours.
Now I'm at endocrinologist ( I also have type 1 diabetes) the I'm planning to watch Netflix!
And yes, hope msmaries first treatment goes smoothly
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Farfalla you might want to consider a keto diet, which can benefit both diabetes and cancer.
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yes, I do avoid carbs in general, always done that. Not sure if that's keto, but I eat a lot of protein, prob too much fat (cheese!) but minimal carbs
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Please, women, be sure to put yourselves on a bowel regimen as these antiemetics are highly constipating! Miralax, stool softners, high fiber, lots of water!!! I am so glad to be passed the AC of my treatment. In my case the side effects lasted a lot longer than a few days and get worse each treatment. Listen to your MO and chemo nurses! I'm a retired oncology nurse and it has been no fun, however enlightening, on this side of the chemo chair!
Best wishes to sll,
leenso
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Absolutely YES to ice when you are getting the Adriamycin IV push!!!! Popcycles, crushed ice, Italian ice, start at least 5 minutes before IV push of the red stuff, during the push and a good 10 minutes after push is concluded. Who would tell you otherwise!! It's to prevent, diminish horrible mouth sores!! Please do this next time!
You should now, before any sores even start, rinse your mouth out with warm water and 1/2 teaspoon salt, I used Himalayan Pink several times a day. You can just do that, but I added 1/4 teaspoon of baking soda as well. I taught this to my chemo patients before I retired as an oncology RN.
Good luck!
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Farfalla6– what instructions were you given for anti-nausea meds?
I was given 2 prescriptions and told to take prescription 1 as soon as I got home and then every x number of hours (even needing to wake up at night to take) then to start prescription 2 x number of hours after prescription 1 every x number of hours (even during the night) and to do this for the day of chemo and 3 days after chemo.
Also, if I didn’t eat every 3 hours, I would get nauseous. So I kept soup and already cooked proteins handy (you need protein during chemo). Really liked Panera chicken noodle soup the by day 3
Reference ice— I was told to suck the on ice chips during the Red Devil dose to help prevent mouth sores.
And, as was just mentioned, I took stool softeners while taking anti-nausea meds so that there wasn’t any constipation.
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Absolutely YES to ice when you are getting the Adriamycin IV push!!!! Popcycles, crushed ice, Italian ice, start at least 5 minutes before IV push of the red stuff, during the push and a good 10 minutes after push is concluded. Who would tell you otherwise!! It's to prevent, diminish horrible mouth sores!! Please do this next time!
You should now, before any sores even start, rinse your mouth out with warm water and 1/2 teaspoon salt, I used Himalayan Pink several times a day. You can just do that, but I added 1/4 teaspoon of baking soda as well. I taught this to my chemo patients before I retired as an oncology RN.
Good luck!
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oh good point! I was thinking of ice being protective of neuropathy, not mouth sores! But they really didn't recommend sucking on ice. Nevertheless it can't hurt and will make sure to do it next time.
I have been taking colace and Senecot every day already for the past few days, again I knew this from the boards, not because they recommended it.
They told me to take Zofran or the other -zide one for nausea, but to just try one first and if it’s not enough either take both or try the other one alone. I’ve been just taking Zofran every 8 hours.
Was fine with quick walk and grocery shopping today
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Farfalla6,
Glad to hear that you started feeling better and were able to do some regular life stuff today. You give us hope!
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All this information is so good to know!
Appreciate the info on the constipation side effects of the antiemetic's. My MO (the one that is 4 hours away) didn't say a word about it. Like you said, I have read more and heard more from friends about managing SEs of chemo than what has been offered by the MO. Actually, when I asked about sucking on ice chips, cryotherapy for hands and feet, etc., it was brushed off as not a thing, since not well published by research. I also asked about Claritin for managing bone pain with the Neulasta SE's and was shot down. Sometimes I think providers can be to smart for our good, as they lose the patient experience responses and only focus on published research (vs. considering antidotal information). Ok, I'll get off my soapbox...
Hopefully my new MO (the one closer to home) will be more forthcoming with information. I have my first appointment with the new MO Monday. I'm optimistic that I will have no delay in chemo starting (previously scheduled to start April 8th).
Farfalla6 - glad you were feeling up to getting out for your walk and grocery shopping today!
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it’s interesting, the doctors are wary of prescribing anything with no clinical data and it seems it a legal/administrative thing compelled by the hospital administrators; the nurses are much more willing to be open to these things (Claritin, icing)and say they were helpful.
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Farfalla6–. Sloan Kettering recommends icing nails during taxane chemos.
My MO recommended Claritin to help with bone pains from Neulasta.
Oh, and I found that drinking ginger ale helped with nausea.
Hope you continue to feel better each day.
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