Anyone Starting Chemo in June 2016
Comments
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Maryann, I'm in your pocket today!! You will get through this!
Dollydimple, did the doctor say it was okay to skip your steroids after the infusion? I sure don't want to take any more than necessary!
Scared67, hang in there and I will too! My first infusion is tomorrow and I don't know what to expect either. The only thing I've been told several times is that the effects are cumulative, so the earlier sessions will probably be easier.
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Hoping you are all having a low side effect week:) I'm nervous too (start next Wed with many of you). I'm more afraid of the steroids (me too Moondust) and weight gain than I am of everything else... well almost... there's that whole neuropathy thing too. I've been buying just about every frozen ice/gel pack thingy I can find looking for the right size/combination to be able to ice my feet and hands and keep all of that stuff frozen during the drive and wait times since it's in the 90's here....I really should have timed this whole cancer thing to have happened in the winter.
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Moondust,
I was initially concerned about steroids affecting my type 1 diabetes as they defo do a number on the glucose readings. I told them I did NOT want steroids at all, which they said NO to. So I agreed to have the steroids in the chemo infusion but nothing else. They sent me home with steroids (in case I could not manage without them) but also were happy to send me away with other stuff too. I was given:
Granisetron
Metoclopramide
and Buccastem
I was meant to take the Metoclopramide 3 times a day and the Granisteron 2x a day and the Buccastem 2x a day.
On the first day after chemo infusion, I took ONE Granisetron and ONE Metoclopramide at 8am and then a Buccastem around 6pm and took no more AT ALL.
I have had no more than 3 tabs.
I know this is going against what I was told to do, but I did not feel too sick and wanted to limit the rubbish going through my poor wee liver. I have been lucky that I did not need any more than I needed. BUT for me the MAJOR achievement was staying off the 4 or 5 days steroids that I was packed away home with. I was dead set about NOT having these in my body. Even after the infusion of steroids on chemo day my blood glucose levels were sitting at 20 as opposed to my normal 4.6 reading.
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Moondust,
The effects of chemo are cumulative in relation to exhaustion I think, not nausea. My nurse told me that the pattern set for chemo one is usually the pattern for all other chemo infusions. So, if you are sick at 8pm after chemo infusion 1, then expect same thing to happen on second round. Although clearly we will all get more exhausted and baldier and grumpier. Also wee things like sores to mouth etc will become more likely too.
What treatment are you getting Moondust?
I saw your port the other day - WOW you are my hero for having that done. If you can manage that, you can manage chemo!
Dolly
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Dollydimple, I have tried a few times to add my chemo treatment to my signature but must be doing something wrong. I am getting TC X 4. I'm still not clear if I will get steroids in the infusion. I am supposed to take steroid pills day before, day of, and day after. So, am I getting additional IV also? I will try to get them to clarify exactly what I'm getting.
Same with anti-nausea. I'm not clear on taking them just in case or waiting until I feel a little off. Then, do I take both kinds, or just one, or what?? I asked at chemo ed but was told "follow your doctor's directions". But her directions are not clear.
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Moondust,
You should be given time BEFORE the infusion to go through all of this with your chemo nurse and an oncologist. I was given various options away with me.
I did NOT take steroids the day before the infusion, but was definitely given it during the infusion. But I think it is up to YOU if you want to have steroids or not. My understanding is that they are used only as an anti-sickness medication, or at least with FEC they are. It might be different with different sorts of chem. But just be quite confident about what you ask them. I was pretty straightforward and said,
'I don;t really like the idea of taking too many steroids. Are they absolutely necessary?'....the doc said 'no, but you will need them and won't manage without them.' I then added, 'so there is no other anti-sickness medication out there at all?'...and of course I was then told there wer many.
My main reason for not having steroids was diabetes, but also I have to admit weight gain too.
I am glad I kept at it, as it seems to me that it's just part of the normal procedure to put everyone on these meds.
I think you need to just say:
1. You don;t want to take steroids.
2. You want to be given something else to help with sickness.
3. Get them to also give you steroids in case you might need them.
4. By second chemo, you will know what you can manage with or without and so get them to give appropriate meds then.
It may be different on your different chemo, but for me FEC has been reasonably kind to me so far....of course this is CHEMO and I am aware that all things might chnage as time goes on.
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Moondust,
I was told to take them all at same time ....although remember that Buccastan and the other one (think it was metoclopromide) had to be taken only 2x in the one day. But still it felt sort of weird taking so many tabs all at once.
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Dollydimples, I will try to find out more, but I have already made my MO upset with all my questions and "demands". If there was time, I would switch to a different MO but I'm so close to being 6 months past surgery that I need to just stay with what I have and not delay any more. My chemo was already delayed 4 weeks because the MO did not think it would benefit me and sent me for a second opinion before she would do it. I knew without a doubt the second opinion would say there was a benefit with my Onco score of 26. He said a 7 to 10% reduction in risk of recurrence.
But I will do my best to find out more information.
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Moon dust - I am also on TCx4 and was told that a very high percentage of people have an allergic reaction to one of them and therefore it is routine to prescribe the steroids for everyone. It's not for anti-nausea although it may provide that benefit too.
I had 2 anti-nausea prescriptions, one to take for sure and another to take only if everything else wasn't working. I never needed the second one, but I was adamant about taking all my prescriptions as I was told. I had very little side effects.
-keely
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Hi Keely,
I was told by my oncololgist that for FEC the steroids were purely anti-sickness. I was concerned initially that not taking them might mean the chemo might not work as effectively, but he said, no, not in case of FEC.
At any rate Moondust, you are best to go by what you are being told. I was told that I could decided whether or not to have steroids, but that if I had to take them, then I should. I was trying merely to keep blood sugars as normal as possible as for me that can also cause sickness!!! Oh the joys of being a diabetic.
I think it just shows that different chemos mean different things for different people.
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But Moondust.....do do do ask lots of questions. Even if your doctor is getting annoyed with you...so what?
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Coffee-lover, yay the drains are out! I was so glad to get mine out. You had a much bigger surgery, and I admire your courage and attitude. Progress is good!!! I did round 3 of taxol today. Steroids & premeds had me feeling good but benedryl is wearing off and I am feeling the ickyness coming on. sooo glad someone is bringing us dinner.
Had a college friend come spend the day, it was so nice to chat and be normal friends, not just a cancer patient.Scared67: yes, I agree, focus on the benefit. this is a war, soldier, you gotta win it. You are braver than you think you are, stronger than you think you are, remember, you survived surgery! Strong, we are strong, grrr, see us fighting cancer! Remember to stand in God's strength too, He loves you sooo much, and he is strong and faithful in all this worlds brokenness. He has connected me in a wonderful way with so many friends, and that says to me that yes, there can be beautiful things from the broken pieces of cancer. Don't look at the black hole of scary cancer, keep focused on the fight, and any day you aren't running screaming down the hallways is a GOOD day!
Maryann88 -- yay, one down! YAY< YAY! do something fun, enjoyable, peaceful after each round. Spend time with a friend, do a puzzle, sit outside, take a walk, read a new book, something! REward yourself for fighting the good fight. try to eat well, lots of fruit, fiber and protein for your body to heal. and Drink a TON of water, that helps me A LOT.
Praying for all of us, A
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i have to say - today was exhausting. The drains were removed but the plastic surgeon also wanted to inflate my expanders. I didn't think anything of it until I had the echo cardiogram. Expanded skin + that wand pressing down + me lying in a weird position = pain. Then the nuclear bone scan. I'm tired.
Next up - port on Thurs.
Labscientistmom- I love your optimism. Thank you for being so positive.
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Hi everyone and esp anyone who can't sleep like me:
I start round one today. Having port put in first. I'm hoping whatever they give me for port will help me sleep during the following six hours of infusions! Feel dead inside that I am still dealing with cancer (since August). Had breast cancer 10 years ago but it was so much easier last time. Hope everyone has agood day today and finds their joy!
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Hi All,
Assuming Echocardiogram, port placement and whatever other goodies they have lined up for me go well, I'll be joining the June group starting AC-T (taxol) on the 30th.
I just registered for the forums, but have been reading for a while. I both appreciate all the info and sometimes wish I hadn't read things as it's led to some stress and second guessing on my decisions. I try to remind myself that often it can be people posting worse case scenarios, and you don't always hear about everything going as expected.
Relating that to my chemo, is that my MO had wanted me to do TC with the taxotere, but having read on the forums here the issues regarding possibility of permanent hair loss, I pushed back on that. I got my Oncotype score (30) and suggestion of TC just this last Thursday, so my weekend was spent poring of many scientific articles, which while often confusing and overwhelming was overall informative and as reassuring as reading about cancer stats can be, haha. Even tho I'm the nutty arty one in the family, it's a pretty sciencey family, so reading the info and numbers was the way to go for me.
With a telephone consult with my MO yesterday, I got confirmation that either treatment would be effective, and her concern on AC-T is for the possible serious side effects (the heart etc , the ones that are less than 1% chance). I explained that for me the chance of the serious quality of life side effect of permanent hair loss with taxotere outweighed those AC-T side effect chances. She's not enthused about my choice, but ok with it. She wasn't familiar with to hair loss issues, but hey, the FDA is, the manufacturer lists an almost 4% chance, the lawsuits and several other studies are making me willing to face 20 weeks of chemo rather than 12.
I don't mind the hair falling out, but as someone who already has baby fine thin hair, I didn't think I could face those chances of permanent loss. I looked into the cold caps, and I know they can work great, but it looked like a lot of expense and effort for something that only works some of the time. Plus I will be going to my chemo sessions on my own for the most part. At least I only live 5 mins away from my hospitals!
Best of luck to us all! I'm looking forward, as many of you are, to getting thru this next step!
Cheers,
--jo
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Port surgery was a breeze. I was surprised though. Someone had told me the anesthetic was same as having colonoscopy, but it was a bit stronger. I did have some kind of breathing tube put in during(I was asleep from anesthetic when it was done), but it didn't go through the vocal cords, so no sore throat! This morning it's a bit sore when I lift my arm, (it's on the right side and I'm right handed), so everything I've done has reminded me it's there, but not enough to take any meds. I can't take bandage off until tonight, so I haven't seen what it looks like, but seems to be closer to my shoulder than I thought it would be. I'll post more tonight. All in all, it wasn't scary at all and I'm having little discomfort.
I found out my start date will be next Wed, the 15th! Coffee-lover, I think you start the same day. I'm happy to get it started. 4X AC biweekly and 4X Taxol biweekly. I'm attending the chemo class this morning, and echocardiogram is on Monday.
I'm so grateful my boss is so kind and understanding...I've been out more that working lately. I still intend to work as much as possible through treatment, as it keeps me busy and my mind is occupied on something other than cancer! I am a bit anxious because my work involves a lot of spreadsheets and financial calculations and trades. I know if I feel chemo brain too much, I'll have to have someone else do those parts of my job.
I'm trying to just stay in the moment and now its off to chemo class and to work for a few hours. -
So glad to hear of others going through chemo! I started dose dense AC last Tuesday and was tired the first 3-4 days with slight nausea. Zarxio shots started day 3! Hard at first but not so bad now. But I am waking nightly at 4 and sweating...and can't go back to sleep. Also, I wake with a headache every day! Anyone else?
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Dear Joeychen, Welcome to the community. We wish you well as you begin treatment later this month. Keep us posted. Stay connected here. The Mods
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I was supposed to start chemo tomorrow but it is delayed until I do a little more healing from the BMX. Maybe next week.
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Heathet - hope you are doing ok with your healing and starting chemo later. I went for my PT assessment and expected het ot tell me I didn't need anything but alas, the ROM she made me do was fine on my right but my left was kinda pitiful. Then she looked at my port site/neck and said, "what happened here, why is it so tight and over your collarbone" - nice... I didn't swear but I thought about it. Hugs to you:)
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LJ2016 so glad the port surgery went well. The stiffness gets better, but it took a couple -three weeks for mine to stop aching and the bruising to go away. For reference, my chemo brain started after the second dose of Taxol. You might ask about weekly taxol vs every two weeks. New studies say its better for less allergic reactions and just as effective cancer-killing wise.
Heathet, bummer you have to wait to start chemo but good that you are getting more healing time. better to heal before stressing your body with chemo. I go for a CAT scan next week, just to be sure there isn't anything nasty lurking anywhere. My sister was stage 4 BC when diagnosed (sadly lost her battle @end of 2013) and my mom had Stage 4 colon cancer @diagnosis too. She died when I was 6 yrs old. becasue of that history, I asked my MO for scans to be on the safe side. Praise God, my tumor markers are negative, so hoping for negative scans. i am glad to be doing them for the peace of mind.
I finished round 3 of weekly taxol yesterday. A bit headachy today, but my feet arn't hurting as much because I iced them too! My Hgb dropped last week, so my son and I are getting InNout burgers for dinner tonight!
Blessings and strength to all, A
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Hi everyone and to all those insomniacs like me!
Port surgery easy and so far just tightness. Chemo followed. I was out for most of it from the Xanax and Benedril they gave me. Only trouble at end when shaking and temp drop took over. Started crying, first time ever since all this began in August. Was worried the damwould break. Thank goodness for the angel nurses they were wonderful and stopped my embarrassment. I'm glad I had made cookies for everyone they deserve so much more.
SE- nausea even with meds but tolerable. Headache too, but low grade.Glad not worse. Hope to walk today. I don't think I will be able to run yet. Suggestions on exercise anyone
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Nextyear - you should not have any embarrassment about crying. You have been strong through so much and every once and a while it leaks out. ou deserve to have a cry! Everyone in that room knows how difficult it is; the ups and downs, the fears and faith, it is such a moment by moment roller coaster ride. I'm glad the first one is over and I'm praying for you to feel well! Hugs from Oklahoma to you!
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Nextyear - ditto what LJ2016 said! We deserve a big ol boohoo whenever we need to get it out. It is weird thought when it comes out of the blue but in your case, anesthesia does that to a lot of people, happened to me after my BMX. I was so out of it and apparently was crying because I couldn't open my eyes (according to my husband they were open) and the only thing that soothed me was a wet washcloth... he said it was like my security blanket in recovery and the rest of that night in my room. I vaguely remember that. But anyways, sometimes out bodies take over our brains and give us what we need in that moment. I had a random boohoo in that car on my way to work and it was so annoying because I wasn't particularly sad that day and my make-up looked awful the entire day, I was on my own nerves. I'm sure it wont be the last and now I'm prepared with some extra mascara in my purse:) Hugs to all of my sisters this am!
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One down, three to go. The worst part was the needle stick into the port. Even with the lidocaine cream and numbing spray it hurt like a son-of-a-gun. I said a few bad words! The nurse said next time to put more cream, put it on sooner and cover with one of the special tapes she gave me. The rest of it was uneventful. I managed to catch up on a little paperwork and answer texts from family and friends. I even got up and walked in place.
First I got saline, then they added dexamethasone (steroid) and zofram (anti-nausea). Then I got the docetaxel, then the cytoxan. Afterward my DH and I went to the wig shop and I picked out two short wigs for the coming weeks, and some other head coverings. By the time we were driving home, I had a knot in my stomach but no nausea. The stomach knot persisted until bedtime, but I was able to keep eating small meals as directed.
I took a Tylenol PM to help me sleep better and it worked. This morning my stomach knot is gone. I haven't needed to take any anti-nasuea yet. I will take my steroids today, then that's it for steroids until next time.I am trying to drink all I can. My eyeballs feel like they are floating!
Heathet, too bad you have to wait another week to start, but it is important to let the healing take place.
For those of you who haven't filled out your profiles and made everything public, please do it when you get a chance. That will help me remember what your Dx is and what type of chemo everyone is having. My memory is not great to start with and will only get worse as chemo progresses.
Remember ladies, we can get through this! We'll have bad days but hopefully a lot of not-so-bad days. And this treatment is prolonging our iives!!! Hang in, everyone!!
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Hi Lynn. Sorry it took me so long to write. I ended up in the hospital with a tissue expander infection. So now I am uni boob! I meet with the oncologist to see what my treatment will be. I am more terrified of the chemo then the double mastectomy! I don't want to lose my hair but I know it is going to happen. How are you doing? Have you started yet?
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Yayyyyy Moondust, you have done well!!!
Dolly
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Thank you to both NattyB and LJ2016 - you made my day! Unexpected crying does happen, I guess. Strange when it does. Reminds me that control isn't always needed
Moondust- hang in there is right.
Hope everyone's day is better than yesterday.
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Nextyear (you may already know this) but remember that it is actually healthy to get the emotions out from stuffed inside you and cry it out. Every time someone with Post Traumatic Stress can talk about the experience, and emotionally react to it, it diminishes the damage and problems from keeping it inside. This process is aweful, and the days I have not been brave, and much more emotionally fragile have been super challenging. I have reached out to my support people on those days, and been honest, "I don't feel brave today" and the prayers and support have helped.
I see each of us who is facing this life-hijacking craziness called cancer as strong and brave. My freind sent me a card that really helped: it included Joshua 1:9 "Be strong, vigorous and very courageous. Be not afraid, neither be dismayed, for the Lord your God is with you wherever you go. Hope this encourages you too! -A
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Labscientismom- thank you for your kind words.
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