Chemo starting April 2018
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Hi Maggie,
Hope you feel better soon. I agree with you hydration is key. I was not very good with that the last time around. Btw, I just had the 3rd DD AC on Monday. So yayyyyy 1 more to go. Yes, the nurses slowed down the drip cause of my headaches. I have written about it earlier as well. Next time take some mild pain killers with your pre meds, you should be okay.
Dee, you have lots planned for the week. Have lots of fun. Enjoy.
Thanks Eliz, I have written it down. Be kind to yourself the first week just as a reminder. The ear ringing is driving me nuts.
DebAl and Leli, haven’t seen you ladies in a while
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Maggie, I understand...you should pull out of it soon, it does improve. I wondered as well, if each infusion is similar, intensifies or what, but it's prob different for each of us. I hope this day is a bit better for you. Ride it out on the sofa, with water, tv, and whatever you enjoy reading.
Hi to everyone and may this day be kind to you.
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Dee - congratulations on your double graduation. Exciting. Yes Marvel is getting me through these rough days too.
DJT - I went back on BRAT yesterday. I'm just almost scared to eat. I've had 8 Imodium pills since yesterday evening and still with the Diarrhea. I may call back the nurse and ask is the goal no diarrhea or just bearable diarrhea. I think I'm doing a decent job with the hydration. I bought Pedialyte yesterday and have added that and chicken broth to help with electrolytes.
My memory from past chemo is every round is a little different but based around a similar outline. Mainly bad days/good days but side effects may vary. Of course this time around I was prepared for awful constipation because that is what I had with my last chemo drugs. Now I"m stocked up on all things diarrhea and maybe next round will be constipation.
When chemo brain hit , hubby was very good of reminding me things like remember these few days are bad then it starts getting better. Very helpful. This time I'm using a calendar to record SE etc.
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Oy duffyzmom--that is my worst nightmare. FWIW, I think you can take 7-8 Imodium pills/day (at least that's what I read on another thread, and I know my GP has told me that before). Also, you're probably already doing this but when I've had IBS issues, I take some first thing in the morning on the advice of my GP--to kind of slow my system down before it gets revved up. My worst fear of what's coming is if I get in a situation where I'm afraid to leave the house. You poor thing!
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Duffyzmom, I am so sorry to hear that you are still struggling with diarrhea. I dont know what to say. I wish you feel better soon.
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Hello out there. I started chemo 4/24. My question is what is a good extra soft toothbrush that you may have used. My biggest SE is mouth pain. My gums are so sore and bleeding. I’m currently using a toddler toothbrush (a cheapie) but it feels like I’m brushing with razor blades.
Thanks in advance.
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FD, I’ve been using Colgate 48% Softer Bristles, 360 Enamel Health Sensitive Extra Soft. Sorry, I tried to post a pic, but I don’t have the energy to fight technology hiccups tonight. My first chemo was 4/26 and so far so good with this brush
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FD, I also just noticed this is your first post. Sorry that you have to join us, but I’m sure you’ll find this group of wonderful women to be a true godsend of support and information
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duffysmom, wow so sorry. I got the diahrrea back a bit, but not quite that bad. Today I had a follow up appointment on my lumpectomy breast, as it had to be drained of a hematoma 2 weeks ago. ...So we actually went out to breakfast early this am, and I delibratly took Imodium early am. Ate a half way normal breakfast. ALL HELL STARTS TO BREAK LOOSE ....big time stomach cramps and diahrrea... it like my guts were saying, "ok you think your smart taking Imodium , hey, I'll show you!!!"an hour later, almost late leaving house for surgeon appointment. Can't get off toilet......I run to grasp purse to leave, phone rings...Drs. office, " are you on your way, because we can move up your appointment slot, as we just had a cancellation..."??
Oh yeah, I'm hurrying...my other half drives like a bat out of hell.... gets me there in record time.... I have to run to bathroom while he signs me in..... I open Drs. Door back up to re enter, and nurse is calling my name..all heads turn..omg. I go in ....i lost 5 pounds since 24th. Get in exam room, whoops, run to the, bathroom, AGAIN,. I think im going to die of this stress and stomach was crampimg like a baby wanting out!!!
I run back to exam room, get in gown figuring ....quick visit, no biggie. RIGHT.
Dr. Says I need to do another Aspiration on breast. And she has an intern with her. A big great big guy, I didn't know.... him, dr., and nurse in tiny treatment room for a mini surgery... Lay down stomach sounding and acting like mount Vesuvius.....needle, aspiration. Done. Check out at counter. Grab Mike's arm... Get me out of here... oh wait, I got to go to the bathroom.
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FD..WELCOME WELCOME. I wish it were under different circumstances. I also had my first chemo on April 24. This thread is a lifeline of encouragement, the ladies here are so genuine and kind.
The teeth issue. I bought a pack of toothbrushes at the dollar store, pk of 5 soft. I bought a new water pick set up with all the attachments, including tongue brushes. I bought Biotine [store brand is fine]. And a new box of toothpaste. I also bought tablets that are able to hydrate, even in mouth as you fall asleep. They are called Zylimelts made by Oracoat. Keeping mouth hydrated is key to keeping teeth healthy.
Trade out brush weekly, try Biotene toothpaste too. Great stuff. GO gently, and rinse with baking soda and salt with very warm water as often as possible. Of course, your dentist is your go to professional, but these are what helps me. I rinse with a small mouthful of Biotine every time I visit the bathroom.
Best, Deborah
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Oh, Maggie2, that first chemo was scary and loooong. I had no idea what to expect—yes, everyone was a bit vague. I’m so sorry it was hard. My MO said that yes, they can make adjustments as needed based on reactions ora results of lab work. I was also told to expect “cumulative” results...a little more tired or run down each week until it’s done. I mostly agree, as well as new side effects appear and current ones go away. I definitely agree that hydration makes a positive difference in how I’ve felt. I did ice chips during Taxol, and that helped me. It’s worth asking about dose changes if things get worse.
Dee
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Duffyzmom, that’s awful! Would it be worth asking about Lomotil, Imodium’s tougher cousin? I can take 6-8 Imodium a day, but was told to call if it didn’t help. Glad you’re keeping up on electrolytes—smart thinking. Can you call if there’s no improvement? So sorry about this! It’s tough for a lot of reasons. I’m glad to find a superhero loving kindred spirit.
Dee
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FD, welcome! Sorry you have to join the club, but this is a supportive group with many good ideas. I have a soft brush from my dentist and brush 3 times a day with Arm and Hammer baking soda toothpaste that has fluoride. I then swish with biotene. So far, so good. I agree with DJT—the warm water feels pretty good. I drink cool, but not freezing, water all through the day. I think it makes a difference. Keep us posted on how it goes!
Dee
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FDwirhfurkids, I have a water pick to clean my teeth, as well as a super soft brush.
Djt, thanks for the information about tablets.what store did u find them in?? I've been noticing the change in mouth being a little bit more dry when I wake in mornings.
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Hi everyone,
My wife's TC protocol starts tomorrow. She seems ok with it, but I'm anxious, not so much with the infusion, but with the side effects that will be coming.
We went to a chemo class today and, even though we've been through this before (My wife had AML 16 years ago), we learned a lot of new stuff.
Anyway, this webpage and everyone here has been so helpful.
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Engine104 - Sorry to hear your wife is also having to go through this again.
Thanks everyone for the support I think I'm starting to get this under control. My Onco nurse actually said I could take 10 Imodium a day for a few days. Today I'm going to call and see if just having it in control is sufficient or if they prefer it to be completely finished. I can put up with a few loose stools every day. Although like DJT my stomach constantly sounds like Mt Vesuvius. Sorry to hear about your breakfast - that is my biggest fear and why I'm scared to eat anything other than the BART diet.
Urdago - I ordered those melts on Amazon but I think you can find them at CVS.
FD sorry the mouth issues have got you. Mine have thankfully subsided some although yesterday my ginger tea which had been tasting okay tasted like battery acid. If the rinses and melts don't do the trick call the oncologist for the magic mouth wash. It's an RX and last time I was on chemo I had big ulcers on my tongue it was the only thing that did the trick.
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urdrago...I got the mouth tablets on Amazon. Check out the whole line of Biotine tho.
Duffysmom, what brand of ginger tea do you have, where did you find it? I have been looking and not found any yet. Hope the imodium kicks im forr you sooner rather than later. I'm back on it religiously now as well. At least it's cheap at dollar store.
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Maggie- I did not have symptoms as bad as you you had a horrible time and your bp was really lo. I did have the headache (loud ringing in ears)and felt so hypersensitive to anything -.I layed around for 5 daysI felt generally lousy. I asked my doctor about the premeds : i had the steroid , Aloxi,Amend (and phenergen after at home.) She got rid of Aloxi ,phenergen and decreased the steroid. She wouldn't touch the chemo just yet... It made a huge difference I felt 100% better than round 1. When I get the Cytoxin IV I feel like the top of my heads going to blow off:(. But it subsides and I take advil I'm sure they can give you something stronger. I'd ask for a pain med if Claritin doesn't work for bone pain-I think the steroids are hell too. Maybe they could give you a little more IV fluids ( esp with your bp)I really pleaded my case- nurse got the pharmacist involved. I had no nausea even getting rid of 2 meds. Zofran alone worked. I'm on th A/C now x 4.
Talk to your chemo nurse and MO- be persistent. You shouldn't have to go through that. Round two should be easier. To summarize my scattered response!
Ask about the steroid and side meds - maybe decrease a bit
Pain med for bone pain
A little extra hydration ( help your bp and pain)
Prayers to you - keep us posted
Betsy
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without another lengthy rammbing book my chemo brain somehow missed all the other posts. I’m praying for you all. This diarrhea is insane. I’m so sorry you are going through this. Bets
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I keep reading and hearing that my hair will start falling out by day 14. It’s only day 11 and I don’t notice anything. I have an appointment to cut my hair today. I planned to take it all off but now I’m wavering. What should I do? I know I need to at least cut length off (it’s mid back length)
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FDwithfurkids - I didnt notice any hair loss at day 11 either. By day 14 you will start seeing more and more. It will get very messy and it will be everywhere. Even though I had started shedding starting day 14, it didn't look obvious so I avoided cutting it. I used hairspray to control the excessive shedding and I tried not to touch my hair at all. It got worse day by day.
I had my hair shaved (with maybe a 1/4 inch left at the top) on day 19 right before my 2nd chemo treatment. My hairdresser did it and washed my scalp. By the time she was done washing it, I had barely any hair left. Unfortunately, what is left behind is spikey and sort of sensitive when I press down on it or when I put my cap/scarf on it. I am debating on whether to shave the rest of it off or not. The stubborn ones that are staying on have actually grown longer since then. I am going to keep it for now because I like having some sideburns when I wear my head covers :-) I'm also curious to see how long they stay on. I'm on day 8 of my 2nd round.
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thanks Leli. A part of me still wants to believe I won’t lose my hair. But a bigger part of me has made peace with it. I have had very long hair for more than 2 decades and for the first time in the last week I was ready to take scissors to it. Suddenly I’m irritated by it getting caught and tangled. I guess I can always just start with a new short style and my DH can take the clippers to it later
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I had long hair before chemo. I got a pixie cut before chemo #1 so the shedding (even though there was a lot) wasn't too bad to clean up. Hair loss with longer hair may be more difficult to deal with. Go with a cut that will make you happy for the short time you will have it. When you feel like you are ready to shave it completely, do it then. There's no rush. Just be prepared mentally!
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FF... the hair issue is looming for me as well. I've have shoulder length blond hair for years, but am not going to watch it be left all over my pillow and home. So, at the first sign of it going, I'm just having a sizzor fest my own self. I am prepared as much as any of us can be. Just the thought of looking in the mirror at a bald head freaks me out. I bought a nice wig I'm happy with, some caps, and a sleep cap that I really like from tic very soft and pretty. I just can't see myself walkIng around with that kind of vulnerability. Have been watching YouTube vids on how to do eyebrows too. .im thinking the best way to avoid curious stares is hold your head high, wear it like you own it, shoot, I do, that wig was pricy! And make the best of make up, jewelry, and of course, lipstick.
I'm trying to decide tho...if anyone dare ask me....did I get a drastic cut, or is it a wig, do i want to just tell them or do i say duh.
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Day 5, I feel much better, thankyou. Although I am sad seeing some new faces here. Don't get me wrong, everyone is welcome to this wonderful community but I wish there weren't more people going through this. I don't know if I made sense there just how I felt.
Djt and Dee, hope you guys are feeling better. I made breakfast for the fam, packed lunches feeling good.
On top of my ear ringing and sensitivity to hearing, our apt complex decided to check the fire alarms in every apt yesterday, my hubby forgot to book my kid into after school, a friend took her home and she had a play date, I send him to the get groceries with last week's list. Its been a fun yesterday.
I shaved my hair after the 2nd AC. Some of the stragglers have gained length. I look like I just hatched out of an egg. I still look like me though. I am more worried about the eyebrows. Thats gonna be some look.Djt, I agree with you, lipstick makes everything better and sunglasses.
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Hi Leli,
I had a lumpectomy on January 2nd but they were unable to get any lymph nodes so they actually went back in on March 28th and tried again. It was unsuccessful, based on my ONCO score of 26 my Oncologist said I would need to do chemo, radiation and hormone therapy. I start my chemo on May 24th, Taxotere and Cytoxin 4 rounds for me too, should be done in three months. I am not sure what to expect , they called in my prescriptions 3 nausea medications and a steroid, they are Prochlorperazine, Ondansetron, Aprepitant and Dexamethasone. Hope I spelled those right, I have been researching the chemo drugs and the added prescriptions and I am feeling a bit anxious. When I saw your posit I noticed we were on the same chemo regiment, I just wanted to reach out and see how you were doing, I also wondered if your medication were similar to mine and what you experience has been thus far. I have been reading all the posts and someone made the comment it was good to have this community and I couldn't agree more, it is good to have contact with people who are going thru the same thing. Sending love healing light and good vibes to all :-)
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Welcome MusicallyInclined! I am on all the same drugs as you. Although, you have 1 extra nausea medication. You will probably get Neulasta as well. On chemo day, they will start with giving you Benadryl and steroids in your IV. Then they give you the Taxotere first - this one is the stronger of the two. So the first time they give it slowly so they can monitor any bad reactions. After Taxotere, they give you the Cytoxan. Then they attach the Neulasta to your arm (someone mentioned they got it on their stomach). The Neulasta automatically administers 27 hrs later. Then you remove the Neulasta. Youtube has videos of how the Neulasta works if you are curious.
My experience so far has been good. I followed most of the tips from this community regarding the Claritin, constipation/diarrhea remedies, etc. so I think that helped. Chemo day and day 2 were uneventful for me. My SE was mainly tiredness, feeling weak, sunburn feeling at the back of my neck, minor back spasms but manageable with Tylenol. I would feel nauseous when my stomach was empty especially early in the morning but I took the nausea medicine and that helped but it didnt happen often. The worst for me is the dry mouth and loss of taste. All the SEs happened from days 3-8. I felt pretty normal the rest of the time leading into 2nd chemo. Hair loss starting around day 14.
I'm on day 8 of 2nd round of TC and the symptoms were similar. No back spasms this time. I should be on an upswing again :-)
I hope that your experience will go as smoothly!!!
Stay positive everyone!!!
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Hi, everyone,
Here's my update. Round 2 of AC was today. It went about the same as round 1 - which is to say, everything went smoothly. Hair started coming out today - not clumps but strands. I'm supposed to get shaved and styled for the wig tomorrow, but I'd like to put it off another day. Depends on what comes out in the shower tomorrow.
I've been feeling really good. I can't complain about anything. Some mild nausea - but controlled with the Zofran. My fatigue day was day 6 - so I know what to expect this time too. I am hoping my side effects don't get worse. (My MO said on AC, the side effects only worsen by 2% each treatment! I'm hoping he's right!)
I am so sympathetic to all of you with worse side effects. Diarrhea - that's the worse! Hope relief is coming soon!
Take care,
Linda
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Hello ladies, third round of AC and my side effects have kicked in again. I got home around 4pm ate small and drank some water. Headed to bed, and woke with headache, internally shaky like me blood sugar is low, shaky legs, no strength.. so I tried to eat cottage cheese, and than headed to bathroom with nauseous(didn't get sick.) After that i took my back up pill nauses and 2 tylenol and been laying in bed. Called my MO and they said, probably a side effect of steriods, take benadryl. . So I took another pill, now just waiting for relief. .if I feel worse I'm to call my MO..
I hope we can figure this out bcuz my next appt. I'm going to a lake house for vacation in between infusion. Family too, 10 of us total plus my Jemma.
Im ready to get off this Roll coaster ride that's for sure..
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First round of TC infused today. So far, so good. We are prepared: oral and suppository anti-nausea meds, Lidocaine mouthwash, steroidal med that you take the day before, day of and day after infusion, Biotene, etc, etc.
They decided because of all the chemo my wife had 16 years ago that a PIC line is a good idea. They will call us with a date to put it in. My wife had a porta-cath before and it really helped.
What I'm reading on here about diarrhea is worrying. What do you guys do for that? Anything else I should be on the lookout for?
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