Starting chemo February 2018
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Hi ladies, I've had a busy week trying to get everything ready to go for chemo tomorrow and cleaning every inch. I'm super anxious about it and, like several of you have said, I think I'll feel better once I actually start. I've been catching up on the thread and there's so much helpful info. Moth, so glad you're home and hope you continue feeling better! AMBurt, great news! 22fightfor, can you please let us know when they get back to you about the probiotics? I've read some people say they shouldn't be taken on chemo and I asked the PA at my pre-chemo appt. and she said she doesn't see a problem with them. I think I may need to talk to a nutritionist to be sure I'm getting all the right info. TheMinna, thanks! I'll let you know how everything goes. For those of you on TC every 3 weeks, do the symptoms alleviate between cycles after a few days? I'm curious if things like taste (and other SE's that aren't coming to me right now) are only for a few days since there is a gap between treatments. I chopped my hair off and ordered a wig because I want to have it when I go back to work and I feel better seeing yours Debmisto because its the same brand and yours looks great! Thanks ladies for sharing all your experiences this month. I'm glad I was initially scheduled for February because I feel so much more prepared learning from you.
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Moth- so glad you're back home. Hopefully you're completely back on track very soon.
amburt-it's amazing your tumor is shrinking! It's great to actually observe results of the treatment and know that it's working.
Cbok- thanks you for your feedback on the hair loss. Mine is coming off Friday. It got so entangled in the shower today there's no fixing it. I've never seen anything like it.
Today is the first day post round 2 I feel close to 100% normal. Except of course my hair which is the highlight , no pun intended, of the SEs this round. But I'm just ready for it to go.
Hope everyone's SEs are manageable and grateful for this wonderful forum. It's enormous support.
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Mom of two- the main reason people opt for ports/picc is because because some chemo agents, adriamycin in particular, are vesicants which means they can cause massive damage to the blood vessels and surrounding tissue if it accidentally leaks out any. So the bigger the vein they are introduced into the more immediately they are diluted with blood and the less likely to get outside the vein if there is an issue.
For those with hiney problems- before I had surgery I bought a bidet sprayer that I could hook up to my bathroom sink. I bought an extra long hose and now I can spray my rear with nice warm water. I've only had surgery one other time and I had horrible diarrhea then so before this I wanted to make sure I didn't have to take a shower every time I went to the bathroom. Let me tell you, it has been AWESOME. Honestly I wish I had bought this thing years ago. Surgery and chemo notwithstanding it's just nicer on your bum than toilet paper. The US is really missing out on having bidets as standard fixtures.
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Hi ladies, tomorrow is round 2 for me. Amburt great news on your tumor shrinking 😊 Moth glad you are home. Those of you that recommended the water for my toilet needs I did do that with a bottle but did it too late after I was already raw but if I get the big D again I will do that from the start it really did help so thank you all for reminding me. Here goes nothing.....
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Cbok-I had a bidet put in when I renovated my bathroom approx. 10 years ago. It was worth every penny. My friends laughed at me but I didnt care. I used it post BMX for washing my privates.TMI. It was easier to manage my 4 drains with the bidet than using a shower. When your bottom is sore the warm water feels so good. Round 2 is a week away. I had 4 hours of diarrhea on day 8 after Round 1. That was my only bad day. Fatigue was my only real SE. I still take claritin every night. Just in case. Good luck with your next round.
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I was told by my oncologist that I have to take the Claritin because it's an antihistamine and Neulasta adds histamine to your body which causes your bones to ache.He also gave me Ultram for the pain.
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faithwalker i had those nasty spots on my tongue.. doctor told me it was absolutely fine some fungus or so it was and he prescribed me vitamin tabs ..
Amburt even i have mine on friday as well..
Deb the wig is so natural and pretty
So quick update everything is fine just the fact head soreness because my hair is falling.. and its my infusion tomorrow i hope the SE becomes minimal .. last time i had tough time vomiting all day long.. for 2 days straight.. so if you guys have any prior or after infusion tips to reduce SE do let me know .. also since almost half of my hair has fallen im planning to drop into the wig Center to get my measurements for the wig ..
love you all stay blessed ❤️
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22fightfor - Well, had chemo Monday, felt ok Tuesday and Wednesday. Today I feel kind of crappy, but not too bad. Just achy and have a headache. So, good luck!!
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Lovecanada- my SE last about 5/6 days and by the 7th day I def felt more myself, could take care of kids, etc. Last week I felt good, but avoided doing too much to not over exert and also avoid the 7 -12 day? Neutropenic drop. This week I feel great, maybe bc of great weather we've been having in boston area, so overall a good break /recovery of 2 weeks I would say, my rasb I got on my hand went away too . Good luck tomorrow!
Aanoliver.. did they give you aloxi and emend? Make sure they do if they didn't, they are great anti nausea meds!
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had my second round of chemo today all went well met with my doctor first and he did change my regimen they took out the perjeta and lowered my dose of the taxotere and carboplatin by 20% so here's hoping I won't be as sick this time. He did tell me that 60% of women get diarrhea from perjeta and one in five get it like I had it . Hoping all of you getting your chemo this week will have a good outcome.
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Ps, I have found that Tea Tree Shampoo really helps with my sore scalp from my hair falling out. I am a hairdesigner and I usually buy the Paul Mitchell Tea Tree but it is crazy expensive even for me so I was in Walmart the other day, they had a Regis Salon so I was looking at their Tea tree shampoo the girl told me it's the same as the PM so I took a chance as they had the 32oz for $14.99 PM was $40 and the Regis is very close and it does really help. You should use shampoo on your scalp even if you're bald!
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Hi Deb-glad all went well today. Hopefully removing the Perjeta solved your diarrhea. My MO did not put me on it partly because of its high toxicity( raging diarrhea) and because I already had surgery. I am on Herceptin,Taxotere and Carboplatin like you are now and have not had diarrhea. Constipation seems to be more of an issue. May want to check into some prune juice just in case. Hope you have an easier time this round.
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hey everyone-a first for me to report. As expected, hair really started falling after round 2 of AC which was last Friday. Yesterday it got so entangled and no amount of conditioner helped. I cut it myself at home just now! Boy short. I'll have me hairdresser fix it tomorrow. And I've always had very long hair. It was surprising to me how un-traumatic it was! Honestly, I actually love the light feeling! I know it's all going to fall out soon. And I have my wig here so starting tomorrow wig for me.
Hope everyone is doing well and know that you're not alone!
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hi Girls,
My treatment was thankfully uneventful on Weds. woke upThusday felt terrific by noon I felt terrible.
Neulesta thingy annoying but that’s done. What a strange ride. Nowfor sleep I hope.
Tracy
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A couple of weeks Lilly in NYC I’ll be right there with you. And before you know it we’ll be finding ne hair growth.
We just gotta hang on .
Tracy
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hey guys,
It was supposed to be my chemo today..
Unfortunately my counts dropped to 3000 and hence i cannot proceed and they told me i haveto wait 3 days and do blood test again if they are normal orelse they would go for dose densed chemotherapy.. i was happy it will get over quick now this had caught me little nervous.. 10 days back i had 4 neupogen shots and my count came up to 8000+ and i was relieved however now it dropped suddenly i never expected it
My scalp was feeling sore so after this sad news i went to the wig shop.. got myself a wig so they itself trimmed my hair and set the wig for me .. i bought not so expensive wig .. but it looks good enough..
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neulesta ouch.. hip pointer. Oh well
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Hello all,
I will have my first round AC at 1:30. I am starting my third day fasting on water and broth. This morning I woke up even more tired and weak than yesterday. I have also some nausea. I can not believe I let my sister convince me to do that! How am I suppose to go through chemo drug in that state? I don't know if I would feel worse eating then discovering SE from chemo. I will eat next round. I cannot stand the broth anymore.
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Hi ladies! So many posts since I last checked in with you all!
Amburt - awesome news the tumor is shrinking! Congrats! And good luck today on your infusion.
Moth - maybe you can cut your hair super short but not shave it completely Yet? Wait for your numbers to get back up and then shave? I'm glad you're back home and no fever and I hope your numbers get back up very soon!
Deb - I hope the change in chemo medicine will help out with your SEs.
Rockcity - I'm glad you didn't have issues on your second infusion. No nausea is always good!
Anoliver- hope your counts get back up so you can get your infusion soon.
I'm day 5 from infusion 2 of AC. Suprisingly day 2 kicked my behind (last time it was day 4). Since then I've been tired and had a constant mild nausea (taking anti nausea meds every 8 hrs), but nothing as bad as day 2. I've been napping, eating when I can, and going on daily walks. My hair started falling yesterday. I'm cold capping so I hope it will stop soon, but definitely going through the big shed now. Today I'm feeling better and hopefully will be good to enjoy the weekend with my family (fingers crossed).
. My 5 year old son is my biggest concern now. His teacher said he's regressed at school and i see it at home too. He told my mom (his grandma) that he's sad about me and worried I'll go back to the hospital. I spent 3 days at hospital after my BMX and he had a very hard time then. So next week I'm going to see a psychiatrist to figure out how to help him. He is having a hard time understanding that the medicine that makes me weak is actually helping me.
Anyways, hope you are all doing well. Wishing you all a great weekend
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Well yesterday evening my energy level really crashed...really tired since then (had first AC on Tuesday) and achy too.
Also having to keep an eye on constipation...things are slowing down...😟
Hubby did my first shot last night and went ok.
Pbello... sorry to hear about your little guy...you sound like you're on top of it though!
Take care all you lovely ladies!
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Hi all, I wanted to share my recent good news with you- I got the results back from Wednesday’s full body PET and there was no sign of cancer anywhere except the tumor that we already knew of! I’m feeling much more hopeful now. Also I’m in the Chicago area and the weather is gorgeous today, so after a two hour nap (steroid crash?) I went for a half hour walk so I’m making the most of this positivity today. We need all we can get.
Pbello I’m so sorry to hear that your little guy is having a tough time. Good for you for using your resources to help him through this. At my treatment center they gave me a booklet about talking to kids about cancer at any age (my kids are a bit older- 11 & 16), hopefully you can find something like that, or the psychiatrist will help you find your own words to help him. It’s hard on a parent when all you want to do is protect your children from any loss of innocence.
Lollote I didn’t do a complete fast, but I modified a fast and it was HARD. I was never so happy to eat normally again, so I can totally sympathize with you there. Aanoliver may your counts climb, and Deb I’m glad they changed up the meds so you hopefully will have a smoother recovery this round.
LoveCanada, I finally got a call back from the dietitians today, and of course I didn’t see the phone ring so they left a message
However the short answer was: no probiotic supplements, but yogurt was ok. They didn’t go into detail, but promised to send a pamphlet out to me, I can read over that and let you know what the thought is. 0 -
22fighter- congratulations on good results from your pet scan. That's fantastic news. You must be so relieved. Celebrate.
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"Probiotics can cause side effects such as gas and bloating, but these tend to be mild. However, people with weakened immune systems — such as those who are taking chemotherapy for cancer — could be vulnerable to infection by the bacteria. It is generally recommended that these people avoid probiotics."
http://www.breastcancer.org/tips/nutrition/supplements/known/probiotics
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Moth- my Mo said the same thing to me. Stay away from probiotics while Im receiving Chemo. He did say yogurt was ok. Glad you are feelung better.
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Thanks Moth and Jo for clarifying. Yikes- chance of infection? Sounds like a great reason to stay away from probiotics.
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thx jo!
I was stuck at 0.4 neutrophils (testing daily) and finally today it went up to 0.7 ! <happy dance>
re the probiotics, fwiw, I had a bit of loose bowels during the IV abx and started eating yogurt. I'm vegan and used Daiya yogurt. It worked!
Even if you're not vegan, consider trying it if you're experiencing any lactose intolerance too because it's dairy free ... https://daiyafoods.com/our-foods/greek-yogurt-alte...0 -
Grrr. My MO Said that probiotics are fine, a good idea , and gave me the go ahead to use them. It seems like doctors have so many different opinions. It makes it tough sometimes to make decisions with confidence. Nothing about this is ever easy, is it?!
22fightfor- congratulations on the clear PET scan. Enjoy the beautiful Chicago weather. I lived there for many years. Still call it my home
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Guys! I got my wig today! I'm probably still going to wear hats/caps most of the time but this will make it easier to go out somewhere without the sad faces and stares.
Even better- it was cheap! I went to a women's boutique that sells mastectomy prosthetics and wigs that my insurance would pay part of. I didn't like their selection so I found a wig outlet online and they were having a sale. So I wound up paying less outright than I would have had to pay to cover the co-pay for the "cranial prosthesis".
It seems like all wigs take the whole "the bigger the hair the closer to Jesus" approach so I had to really fight with this thing to knock some of the ridiculous volume down but I like it!
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Jlove thanks for the info! Great news 22fightfor! And thanks to all of you for getting back to me about the probiotics. I had my first treatment yesterday and I asked the MO about them since I talked to the PA about them before. The MO said the same as the above information - that we may be more vulnerable to infection while on chemo so to avoid them but yogurt is fine - but she said they’re great after chemo to help get healthy bacteria back in the system. It is frustrating that there are so many different opinions when there are so many decisions for us to make. Luckily this was one of the easier ones! My first treatment went well and so far I’m feeling pretty good. I hope it lasts and enjoying it while I can!
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22fightor, I am glad to read that your results are good. One less thing to worry about. And yes fasting is HARD! That is why i decided not to do it next round and compare side effects because it was 2 very unpleasant days.
Moth, glad to hear that your level are up a bit!
CBOK you look gorgeous in that wig.
LoveCanada, glad your first round went well and that you are still in pretty good shape!
Update: went to first chemo, i feel better than in this morning, much more energy and no nausea anymore! Yeah! I vomited at lunch time because I found a little pest in my broth. From frustration about vomiting without eating I decided to eat a banana and a few nuts. So I don't know if this is all the medicines they gave me or the food I ate that makes the difference but I feel way better and ready to skip dinner tonight and try fasting 24h after chemo. I can do it!
Also, i finished my first course online to renew my teaching license. Waiting for the last assignment to be graded. I have started the new one which is about growth mindset and I believe it will be more enjoyable.
Have a great weekend everyone!
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