Starting Chemo in September 2017

Binniebin

thinking 101. Re neuts. When they're that low you cannot fight an infection easily at all and it can be very dangerous. I'm day 12 post 1st AC and my neuts are 0. They were done to see if I qualify for pegfilgrastin ( I'm in Australia) on subsequent rounds. My MO's receptionist told me to go straight home from work and stay. Repeat blood test in 2 days If my temp gets to 38.0 even without signs of infection or iI get any sign of infection Ive got to go straight to hospital. I'm a registered nurse and live only 3 minutes away so she trusts me. It's important not to to treat A temperature as it is usually a sign of infection . Instead go to Hospital they'll look for the source of infection and be able to mionitor you closely.

As well as being a pain I had just worked out a plan of how to use sick leave to cope through the chemo, I started my new job a year ago! Now Ive just used another 2, 1/2 days. I'm sure my hair is starting to go so at least it's happening away from work at home in private.

Re gastro issues I feel like my oesophagus has narrowed and feel food and fluids it hits a junction. Not nausea, heartburn and only a little reflux. Anyone else? I did find coconut water very refreshing when the nausea reared its ugly head.

I'm so glad we share our burdens with our common enemy. It's so good to not be alone and get your advice. Thanks ladies

Henrietta405

Paulette, the mio comes in a bunch of flavors and types. I just get the original and right now I have a tangerine flavor. It tastes kind of like Crystal Light or any other no calorie drink. They do have versions with electrolytes and vitamins but I have not tried them.

Binniebin, sorry your neutrophils are so low but glad you are on top of it and have a plan

PauletteK

binnie - I have acid reflex on taxol, this time it seems to be better. Wow your neutrophils are so low, glad you’re a nurse you know what to do.

Henrietta Thanks I might give it a try.

OCDAmy

I get really bad heartburn for several days on our around days 4-6. I take nexium daily but I still get a day or two where it is really bad and I have to be super careful that I eat nothing spicy but even then I get it. My chemo nurse told me that she finds that whatever women had before being diagnosed (heartburn, morning sickness, etc.) tends to be exacerbated with chemo. I really have not had nausea through all of this but I also never had morning sickness. I did have some reflux after I was diagnosed, I think because of anxiety. I have some arthritis in my neck and knees and wow, chemo has made that worse (after the two days of steroids wears off). Sounds to me like AC is way harder than TC. I hope TC works as well, that also scares me sometimes, if I didn't get super sick, maybe it didn't work.

Travel_Girl

Oh, Thrush -- can't wait for you to go away -- this terrible taste, film and numbness in my mouth is just yucky! Luckily it doesn't cause me pain, I can eat -- nothing tastes good.

Today I had acupuncture and also stopped at store to get probiotics, at this point I will try anything -- on top of the 10+ times I am rinsing with baking soda/salt/warm water. I know it is really a matter of time - which is why sleeping straight through the next 3 days is appealing right now.

For those that don't/haven't gotten thrush -- I am so glad for you.

I did not have any nausea on TC either, I did take hefty anti-n drugs on schedule - maybe that was it. OCDAmy - I would not think about the TC not working, I did lots of research on the TC versus AC and other Chemo protocols earlier in the process - lots of studies done. Believe me, that taxotere is one powerful chemo drug.

OCDAmy

Thanks Travel Girl, those scary thoughts are creeping in on me as I move to the next stage...maybe this didn't work! Trying to put this out of my mind. It is a little worrisome that they don't do regular scans after this is all done. Not sure how many have asked their MO about follow up but mine says they will do periodic blood tests but they don't regularly scan.

mkn86

I was notified that my DNA test results are available. fingers crossed please? that the results are... favorable?

it's hard to say "favorable" without wondering what i means. if it means not having the mutations, etc. especiallywith scientists discovering 65 more mutations that can cause breast cancer last week.

Travel_Girl

OCDAmy and others -- I asked that question about scanning post treatment -- if you have your breasts removed, there isn't much they can actually do.

You have to find a good primary care and pay very close attention to your body. Take it form me, even when you have scans every year, just something to learn to live with. I still haven't figure that part out -- thus working with a therapist. Kind of like be aware, just don't let it run your life day to day.

That is the trick -

PauletteK

Travel - like to know what close attention should we do? You meant breast exam very often? Some lumps are hidden mine was. Even US couldn’t see it.

Travel_Girl

Paulette -- things like moles or bumps or just generally 'off' -- no one knows you body like you do -- so you have to be in 'tune' to changes. With breast tissue, you see it on a mammogram, there really aren't any other equivalents -- so it is noticing things. Kind of like be your own advocate and push to find out what you have if something is off. Unfortunately no great answer

OCDAmy

My MO told me to still do self breast exams once I get my implants. A local recurrence is generally treatable. Then just be aware like Travel Girl said. The blood tests help to monitor things like liver, bones, etc

PauletteK

I will be more aware about my breast from now on. I have been doing self exam and hoping 🙏🙏🙏 Bad things wont happen that quickly to any of us.

OCDAmy

Paulette, since you had lumpectomy I assume you will still need yearly mammograms, maybe even ultrasounds? I had BMX and was told I would not have mammograms anymore. One of the many reasons I chose to have both removed so I didn't have to continue with mammograms, the scanxiety was awful for me. Plus my breasts are very dense and my mammogram didn't catch this early enough

Travel_Girl

I haven't had my BMX yet (just over 3 weeks and counting ...) -- so will get more info after that. I can tell you after my first lumpethomy years ago I had either an MRI or a Mammogram every 6 months -- this last one was caught between the two - so came up in the 6 months in between -- early stage thankfully, just wish it had been even earlier - fast growing aggressive thing!!!

If you still have breast tissue - have scans often, the earlier the better and my hope for you is that nothing ever comes of it.

Now ... I think I might have a cold -- my nose is running today -- could this be something else - On Day 9 post TC #4 -- any ideas warriors?

How do I know if if is a cold or not - sounds silly I know - thoughts?

PauletteK

Amy - I have dense breast also, mammos didn’t find my lump even US couldn’t either. I know I will have MRI more often and all I can do is self exams and pray to God then do MRI.

OCDAmy

Travel Girl, good luck with the surgery! I was surprised how quickly I recovered. I guess since you are not doing rads you will be able to have exchange surgery quickly?

toughcookie_21

I had my first follow up with my breast surgeon today. I will see him every 6 months for 5 years. Since I have no breast tissue anymore, I won't have scans just bloodwork (which isn't that reliable for breast cancer tumor markers) and appointments with him. I told him I felt like I was going on a tightrope without a safety net. He reminded me that any cells in my body are likely to have been eradicated by the chemo.

OCDAmy

Toughcookie, that's interesting that you will see your breast surgeon every 6 months. I see mine in January (6 months after my BMX) but assumed that would be it and any follow ups would be with my MO. It's confusing to know what doctor your supposed to see!

PauletteK

Ladies, I’m asking for prayers for tomorrow infusion, I’m kinda nervous because I had reaction last time. I’m going to have two more infusions then I will complete my chemo. Pleas pray for me .... thank you so much for the prays and supports!

Meg101

Hi Everyone. Just popping in to say hi and see how everybody is doing. I'm on day 4 after round #3 of Taxotere. So far this round has been easier than round #2. One more to go, then 2 rounds of AC. I think I'll skip the AC after hearing about how bad the SEs are. Congrats to all of you who finished chemo and are ready to move on to the next step. You give me hope.

Meg101

Paulette, you're in my prayers for your next round of chemo. Your MO will likely change it up a bit to prevent another reaction. It seems like you've been on chemo for such a long time and yet more on the way.

Travel_Girl

Paulette - -thinking of you - -only 2 more to go -- you can do this!!! You can do this, I will sooo celebrate w/ ou when you are done. You are a tropper!

OCDAmy -- i won't know 100% for sure if I will need rads or not, until after surgery. Based on scans they don't think so -- however - i haven't had surgery or lymph sent biopsy - so there is a slight chance I have to have it -- fingers crossed no.

As for exchange surgery - I am hoping it is relatively soon -- just have a prior radiated side, so I have to/want to expand slowly and give that skin time to heal up. How long did it take you to recover?

I think due to my state after chemo, it might take me a bit longer than a healthier me -- we will see. I don't have a lot of info on the timing - it will depend on how well I am healing.

My follow ups will be with my MO - blood tests, etc.

toughcookie - that is a perfect way to describe it - tightrope with no safety net. so so so perfect way to describe it

PauletteK

Meg - I have been on 4 rounds of AC and 7 rounds taxol tomorrow will be 8. 16 weeks of chemo so far, that’s long time. Two more taxol for me that will be the end of the tunnel. Are your going to skip AC? Did you talk to your MO.

mkn86

paulette i am hoping for the best for your next two infusions. sending you love and strength.

Amy, i also have dense breasts. when they did a mammogram they missed this and just thought the cyst was filled with fluid.

travel_girl good luck with BMX. hope that recovery doesn't take long.

i went for an ultrasound yesterday. check before my MO moves me to taxo-carbo. the radiologist said there's fluid in my right chest again. (complex cyst) which probably explains why it doesn't feel like my tumor got smaller. and also found a second mass in my left which i don't think i've seen before. a biopsy was done on the first mass on the left and came up benign. anyway i'll wait for the results to be released officially and see what my MO says on what to do next.

If there's anything i learned i really have to take this one day at a time. instead of worry about everything at once. or at least try my hardest to NOT worry all the time. It takes an army to distract me these days.

but somehow i stillfeel like we have to prepare mentally for anything.

enjoy the coming weekend everyone! I'm off to the bookstore today to look at books and art supplies. Please do something that makes you happy this weekend

OCDAmy

Paulette, prayers coming your way!

Travel Girl, I planned to take 5 weeks off and went back after 4. First week is rough but felt much better after that. I had a ALND, that added to my discomfort. That was my first surgery ever, 5 hours was a long time. I was sick after anesthesia, hope that doesn't happen to you.

PauletteK

Thank you mkn, yes just take one day at a time, and pray to God. You’re in my prays also.

Amy - thank you. Speedy recovery from your surgery, are you going to do more chemo or you finished?

mkn86

My DNA test results are available but i have not seen them. The doctor in Frankfurt who diagnosed me wants to discuss the results because they say it might change my treatment plan. so the emergency service in Frankfurt is trying to get my Manila Oncologist and Frankfurt doctor on a conference call. but also the day i spoke to my oncologist about the dna test, (and my ultrasound that showed a fluid filled cyst again which might explain why it felt like my tumor grew instead of shrank on the 3rd dose), he was in a breast cancer convention in Lisbon and was already thinking of changing my treatment plan.

So... my november 09 chemo... tbh i don't know what to brace myself for considering all the plot twists. i find it funny but also makes me a bit nervous. so instead i'm just trying not to overthink.

I've come up with a strategy for weekly taxol. a theme for each week that i can focus on. like european monarchs for one week and that whole week i'll read up on the romanovs, watch the tudors on HBO, etc. and the next week, could be the red hot chilli peppers and listen to all their albums, read their biography, watch their music videos. it's a lot but at least there's variety. aside from working for a day or two.

OCDAmy

Mkn, I love your ideas for weekly themes! Let us know about the DNA results. Do you have any idea how your treatment might change as a result of the test?

Travel_Girl

MKN86 - the themes are ambitious! Waiting for DNA Tests is hard enough in the USA, I can't imagine having to coordinate across countries. Any distraction will help -- so plan your themes away!

I am on Day 12 from TC #4 and still feeling like road kill. I do realize that the treatments are cumulative (I told my husband, that the exponential effect seems out of balance) -- in my opinion . Prior to this past week, I have worked out every day even 2-5 (even if low impact/stretching) , and other than than the Day 2-5ish, worked everyday, etc. The nausea meds made my mind work slow, so I avoided even trying after the first cycle. Work is a distraction for me.

This past week (Day 6-10), a fraction of that, with no work outs (and I need my workouts to get ready for surgery). I think part of it is low hemoglobin levels, they just aren't THAT low...(hahahah like I think I am dr. -- my onc said that I am ok repeating it)

After spending Saturday on/off sleeping and w/ fever -- teetering between upper 99's and 100.3sh I decided to go to urgent care this morning to see if they could see a UTI or other -- 'boarderline' they can't really say.

And of course, this morning I woke up without a fever.

In the end they did give me an anti-biotic RX. I wish I knew what this was -- and if it is just the cumulative effect of chemo and I need to ride it out. Where is the EASY button

I am extra anxious as I was hoping to take a nice long weekend trip before surgery. 3 weeks in counting ...

These chemo cycles are just not that predictable. Good news is, my ankles are looking sexy -- and no taxotere rash this cycle. Silverlinings

PauletteK

mkn, keep us posting, hope things will turn out fine.

Travel - I’m with you, I’m tired today and I know tomorrow would be another bad days also. One more infusion that will be the end of the tunnel.