Starting Chemo in September 2017

PauletteK

Meg - don't worry too much, I have nodules in my thyroid and it turned out fine. I still need to check my kidney nodules but according to my MO it's very common so I have to tell myself don't worry about it. It is always good to have your PET scans.

Mkn - I'm hoping I can make it to the end of my 12 taxol, I don't put too much high hope nowadays.

Amy - how’s going for you? I worried about my thyroid and I did ultrasound and it turned out fine. It’s hard to chase down all these and make us on the edges.

FarAwayToo

Hi everyone, not sure I posted here before. I started chemo on September 29th, so I fall into this group. I'm doing 12 weekly Taxol, then 4 AC every other week (sort of standard AC+Taxol but reverse order). Had asked several MOs at my facility why they use this order, and they told me it really doesn't make a difference, although there was a study out of MD Anderson, that seemed to show better results in Taxol then AC. But they all think there is no difference. I'm also on a clinical trial (control arm) that requires Taxol first, then AC.

Anyway, I had my 3rd Taxol yesterday. Overall, feeling ok, my main side effect is achy/flu like feeling two days after treatment. This week I'm also a bit lightheaded, but I also started my period at the same time as my lightheadedness started. Ugh, I was really hoping these would seize on chemo! It's also very early, but thankfully also very light. I'm hoping it's the last hooray for my ovaries, although I'm only 40, so who knows.

MzPriss, wanted to mention something about your cat. We have two cats, and I was warned by a friend whose husband went through chemo, to be especially careful with cats not coming in contact with our bodily fluids. Her cat had litter box in the same bathroom her husband was using, and at one point cat became very sick: fur started falling out, vomiting etc. She suspects cat drank from the toilet. They were able to save the cat with steriod shots.

One of my cats likes to lick our skin and bedding. Two days after the infusion I don't let her come into my bedroom and sleep with me (otherwise she loves sleeping between hubby and I). I also sleep in a separate bedroom and wash all my bedding on hot after 2 nights. I was told whatever comes out of our pores and other bodily fluids is gone in 48 hours after treatment.

Meg101

Amy and Paulette - Thank you for letting me know that it's common to find spots on scans during treatment, and that it's usually nothing. That takes a load off my shoulders. Now I can go back to just complaining about chemo. LOL.

Paulette - You're probably just finishing today's infusion. Lucky you it's Friday the 13th.

FarAway - I wondered how long it takes chemo to leach out of the body. It's good to know that it's 48 hours.

MsPriss - I gotta hand it to you for braving the wilderness after your infusion. It's actually quite inspiring.

I hope all of you have a wonderful, healthy weekend !!

PauletteK

faraway is right about cat or any pets. My dog used to sleep with me, after I Dx, I trained her to sleep by herself in the same bedroom so she won’t feel alone. I’m from July and August group, now I come and visit you all. I’m doing 12 weeks of taxol and finished #5 today, 7 more to go I will be done! Can’t wait!

rljes

I too had to make the hard choice to have my dog not sleep with me - day after Dx - I put his bed on the floor next to my bed.  

toughcookie_21

My dog sneaks up on he bed when I'm fast asleep. And he is not a small guy. He weighs 85 pounds. I was worried about him being close to me after surgery and during chemo due to the possibility of him giving me an infection or picking up germs from outside. I hadn't even thought of him possibly getting sick from me during chemo. Luckily he is scared of the bathroom so no chance of him drinking from the toilet. He thinks he's going to get a bath in the bathroom so he won't go in any bathrooms in our house. He's a big baby.

Julz42XX

How are you doing? I'm usually so "tough" but this has gave me a emotional rollercoaster. I received my port today & start chemo on Monday. I will be doing 12 weekly rounds & then 4 more doses every 3weeks. So in total 24weeks of chemo then I start a pill (since I have 2 cancers) 1 breast is triple positive the other is triple negative then dbl masectomy.

Really worried about chemo because I'm supposed to start a new job in 3 weeks, wondering how I will handle it because I will be staying in a hotel for 4weeks training at another hospital.

Any suggestions I will be happy to listen!! I'm sending prayers & positive vibes to all of you!

PauletteK

July, would be good to put your info out so we know what are you facing. You have a tough journey ahead of you, physically and mentally. I know some ladies Work and chemo at the same time, do prepare you will might have some down days, if we know what kind of chemo you’re doing, then we can give suggestions

Travel_Girl

Welcome Julz -- I would guess the 12 weekly rounds are Taxol - so you will have to ask the Taxol group -- I am on TC, different SE's --

I have a new set of SE's this round -- Day 10 after TC #3 -- rash -- called MO Team - apparently common w/ Taxotere (silly me I forgot!). Good news is -- it isn't an infection, which was my first thought -- and I was having visions of having to delay #4 and then delay surgery ..... ohmmmm. On a positive note, no BIG D or C this round - so I guess it had to come out somewhere with some SE ...

A picked up Benedryl -- pill and ointment -- and hoping it helps. It is just a little itchy and in weird places -- back of neck, elbows ... I have documented it with photos -- MO team said to keep a record -- to see if it is getting worse, etc.

Oh joy -- chemo - the gift that keeps giving. Fingers crossed, Benedryl and sleep helps to repair it.

mkn86

Port placement scheduled for today but got cancelled last minute because of low WBC counts. They're waiting two days, another blood test and if it's still low then i got granocyte shots the port placement on Tuesday and delay chemo by one day.

i know it's small but it was frustrating to get all those tests and insurance stuff (measly coverage in my side of the world really) done and port placement gets cancelled last minute. i was crying when i got home from the hospital because spending an entire day there is not the best way to spend a day. it was just shitty. but all good now. i have decided to spend today watching cartoons and reading books. and then come sunday, i start all over again with the blood test. I wish i could lessen days at the hospital. but everything's done via IV. so... just have to figure out a way to make hospital days more tolerable.

Julz, welcome to this group. make sure you have your favorite food accessible once your taste buds go haywire

FarAwayToo thank you for the info that whichever meds come first don't make a difference. tbh i'm 2 doses in for EC and MO is considering switching to Taxo-Carbo. and i was worried. but what you said makes me feel infinitely better.

Paulette, you can make it! you're almost at the halfway mark of your taxol.

someone told me some people have their hair start growing back during taxol. is that true? or was it a different chemo drug?

I do smoothies instead of juicing. so i can get more servings of fruit. but i try to eat fruit also for fiber. veggies, i don't juice them but i do put more in dishes even in those where veggies don't normally go in them.

I hope everyone has a great weekend!

hopebringscourage

WELCOME!! to all the new members:) this is a great place to vent and gather great information.

Travelgirl-great no BIG D!!

Paulette!!! YAY you're making humour way toward the rainbow...its waiting for you.

I am 7 days post #2 CTH. SE this time still have been minimal still. I have lost 23 thus far-my appetite is blah and in trying to eat uber clean. Ramped up my calories the last 24 hours because I just felt like maybe I wasn't getting enough of something. I have acquired a UTI-never had one before- not fun🤤 Praying for a good 2 weeks before my half way mark. Still haven't fwlt mentally ready to return to work so taking advantage of this time to rest and recover without the added stress!

rljes

Hi Travel Girl - reading about your rash - I have a skin disorder so it will be hard to tell if its my disease or the chemo if I get a rash, well, I guess I'll know because my rashes now are painful, not itchy. - my MO said they put Benadryl in with the IV chemo each time. 

rljes

Hats!     I want to get some beanies and hats before Chemo starts.  Any suggestions?  I know there are several websites, but I want to also go try some on: Any name brand store suggestions? (and websites too please) 

Thanks! 

Meg101

Welcome Julz - Wow, your diagnosis is a double whammy with each breast having different cancers. It will be interesting to follow your progress. BTW, on the BCO sign-in page, be sure to mark your info "public" so those of us in this group will be able to see your diagnosis, chemo, stage, etc. The public won't see your info, just those of us who are signed up with BCO.

rljessu - I bought several scarves, caps, and bandanas at the 99c Store just for wearing around the house. Then I went to a wig shop and bought a few more head coverings and hats for wearing in public. To be honest, the more expensive ones are not much better than those from the 99c Store.

Paulette- 12 consecutive weeks of chemo? That's a heavy load. Do you ever have days when you feel normal? You and I have a similar dx. I'm on Taxotere and Cytoxan every 3 weeks for 6 rounds. I can't imagine more than that.

Travel Girl - Congrats on avoiding the big D. I, too, managed to avoid it this round.

hopebrings - Be careful with that UTI. Those infections can be tricky during chemo as we learned from Amy.

mkn - What a treadmill they've got you running on! Sometimes it's just so overwhelming dealing with all that's involved with this merry-go-round. I'm glad you took some time to regroup and watch cartoons. Regarding juicing and smoothies, I do fruit and veggie smoothies every morning. Several years ago I tried juicing, but I needed more fiber so I switched to smoothies. I also add vanilla protein powder for extra energy.

PauletteK

Rlj- America Cancer got couple good hats, also I like Cardani hat you can find them from Amazon or Headcovers.

Travel, I got some rashes on both arms, they aren’t itch just red spots. I made an appointment with dermatologist hopefully she gives me some steroid cream.

Hope - I can’t wait to see that rainbow!!

Mkn - waiting can be so stressful, enjoy and eat a lot while you wait. Chemo took away my appetite so you better enjoy all to food now

OCDAmy

Tough Cookie, I am laughing at your dog. My dog runs and hides when she hears the shower curtain open because she thinks I am giving her a bath. My old sweet dog can't jump up in the bed anymore so I don't have to worry about that but it never occurred to me that it would be an issue.

mkn, I am sorry you have been having a hard time getting that port in. You will appreciate having it and it was probably best not to risk infection.

I got several hats at my wig shop and other on headcovers.com. I find that most of the time I wear my black ball cap with hair attached. It is most comfortable and makes me look normal. I have even started wearing it to work. I still have hair, maybe I will get lucky and keep some of it.

I am still struggling with these sores that are not healing. It has me worried but at least they are not getting worse. I am probably going to have some nasty scars. I got my second to last expander fill on Thursday and since then I am in some pain. They are so tight and hurt when I move or take a big breath. I still need one more fill to get them to fully expand (small C). I see my PS one last time before I start radiation. I have to ask her what to do, I am pretty uncomfortable and am going to be living with these monsters for a long time to come.

PauletteK

Amy - are you doing this filling while you are having chemo? Sorry I asked dumb question

OCDAmy

Paulette, yes I get them filled every two weeks. They need to be fully filled before radiation begins because your breast has to stay consistent during radiation.

PauletteK

Amy - wow now I understand when other talked about expander during chemo. Thanks

mkn86

meg, amy, and paulette, thank you ladies. this is one hell of a rollercoaster for us all.

but must keep picking myself up and keep moving forward. so. today a blood test, and tomorrow i do the same run around to get my port installed on tuesday. and hopefully have chemo by friday this week

Henrietta405

hey chemo friends,

Sorry I’m not replying much, it’s hard for me to keep up with this thread!

Jen, thanks for your reply a few days back. As I get farther from treatment I am less fuzzy, so that’s good news.

Amy, I hope your healing picks up the pace.

Paulette and Travel, I also get a non itchy rash now. My MO is not really concerned about it and says take Benadryl. Overall my skin is sensitive and dry, which is opposite how it was before chemo so it’s definitely an adjustment. I’ve started using the CVS version of Aveeno’s sensitive skin body wash and it has helped a bunch.

Mkn, I totally understand your frustration with the canceled port placement. I hope all goes well this week!

I think my SEs were overall better after this second round. I did have a badtime with C, but I got some advice from my nurse on how to handle it better next time. Fingers crossed. I’m working and moved my chemo to Wednesdays so I get to be sick on the weekend, but I didn’t miss any work this time.

rljes

Hi Everyone - mkn86 - I will be watching for your posts regarding port placement. I don't know why that scares me so much (well, I do know why) But I hope it goes well! 

Thanks all for the hat tips. I knew there was a reason I kept all those silk scarfs from the '90s.

Milkweed93

I'm on day 7 after round 3. We did the Zarxio shots instead of Neulasta, and this time I'm not sure they were any better, bone pain wise. Claritin didn't seem to help much, but I wasn't on top of the Aleve either. Each day of the shot I would wake up feeling pretty good, then get shot around 9:00 and by noon I was uncomfortable and oh so tired. My BFF came to visit and take care of me cuz hubs was working a lot, and I was no fun! I mean of course she didn't care, but we are usually laughing and yukking it up. And the brain fog was intense! I was worried for myself. She talked about coming to see me after my surgery and I honestly could NOT remember it. I have two more days of Zarxio, Monday and Tuesday. Wish me luck!

I know a few of you have posted about the skin sores/rashes/scrapes (Amy!!!). I got a bug bite the night before treatment and it has gotten redder, not any bigger, but it is not going away! I'm sure its the blood counts and neutraphils. I do get skin stuff. I've been using this cleanser called Hibi-clens (chlorhexidine gluconate), I get the generic at CVS, and it helps a lot. I even wash my bald pate with it. It isn't drying and it doesn't sting, and seems to keep eruptions/irritations from getting worse. Plus antibiotic ointment. It seems like I get irritations in my hair follicles right before there is a big fallout. My scalp was sore and itchy while those hairs were falling out. My armpits. Pubes. Eyelashes last round - my eyelids were really red and irritated. My bird needs her nails trimmed badly, but it will have to wait until the end of the week when my counts are up. I do use gloves a lot more than I used to.

On an up note, a woman I know who does facials has offered to give me free facials throughout my treatments, including radiation and 6 months beyond! I'm beyond grateful and will pay it forward (I'm a massage therapist).

Travel_Girl

Hope - I think I might have a UTI as well -- I am loading up on extra fluids, l will call MO team tomorrow.

I debated going to urgent care -- as it is the weekend. I am super worried about it (as I was the rash), as I am counting down the 10 days to my next chemo -- and I don't want anything to delay it ... my temperature is normal, monitoring that as well. From this board, I am going to be diligent about it, my entire goal is make sure my chemo happens on Oct 25th. I understand the implications.

Henrietta - I will try that Aveeno type soap - thanks for the tip.

I haven't had my surgery yet -- I have two dates w/ two different surgical teams, so I also have to decide on which one I will finalize with.

OCDAmy - interestingly, they gave me the option for a 'at home' fill -- you do with a wireless device -- up to 3 times per day (really small fills each time). As I am in tech, the tech fascinates me - and for some reason suppose to be more comfortable? I am still researching - called AeroForm, AirXpanders. As I mentioned before, I had my heart set on DIEP flap reconstruction - due to having a previously radiated breast -- unfortunately I don't have enough fat- so I have had to accept implants and due the prior radiation, having TE's will give the plastic surgeon better options on making them similar sizes

Oh this journey - sucks! I am in one of those moods today - over the bad taste in my mouth and feeling just a little bit not normal -- it will pass - just one of those days!

Henrietta405

Travel Girl, I also have my next chemo on the 25th!

My UTI cleared up quickly with antibiotics. I did go to urgent care to have my urine tested, on the advice of my MO because it was the weekend. But the antibiotics knocked it out quickly

mkn86

Henrietta and Jess thank you both

Took a blood test last night, my MO gave the go signal for port placement. so it's pushing through tomorrow.

By 12nn HKT (it starts 7am and then a few hours for sedatives/anesthesia to wear off), i will be a bionic woman! i hope all goes well and zero infections.

I'll post next update maybe day after port placement

Henrietta405

Great news, mkn! Mine went super easy and I was at work the next day. Best wishes

OCDAmy

Travel Girl, so interesting about those expanders! I have never heard of them but googled and it sounds interesting. I'd love to hear more if you decide to go that route. I wonder what they feel like being filled with air and not saline? Mine have been fine so far but now that they are almost fully expanded they feel really tight and hard. We filled mine slowly since we knew we had a lot of time to fill during chemo. Going to the PS every two weeks wasn't a big deal since they are close to my office and its generally no wait because the nurses do the fill. I hope you got on the UTI quickly?

Last night I decided to drink a glass of Cab. My cheeks turned red and got really hot! That has never happened to me before. Darn it, I just wanted to drink a glass of wine and feel normal.

FarAwayToo

mkn, good luck with your port! Honestly, this was the part that was freaking me out the most (a foreign body in my vein?!) (mind you, I haven't have surgery yet), but my port install went very well. It wasn't even tender all that much. It was used 4 days later for my first infusion, and incisions were mostly healed by then. It still hurts when I accidentally press on it, but it's not terrible.

I had it used for something other than infusion today - MRI contrast. I'm on a clinical trial and got my first progress MRI today (only 3 weeks into weekly Taxol, I wonder if they can see any shrinkage?) All nurses were like "aren't you glad we are using the port and not your vein?" and I honestly didn't mind the vein for contrast when I didn't have my port. Getting infusion in the vein would be hard, though. So, here's hoping at least future ones are easier for you, mkn!

Oh, and I had to move my port appointment because of some other logistics, and they very apologetically scheduled me for 3:00 pm, meaning, I couldn't eat since 7 am! I was pretty hungry once I came out of the OR. So, a morning appointment for port placement is good.

Travel_Girl

OCDAmy - bummer on the wine! I had a few sips last week of my typical favorite wine, tasted like muck -- . Just makes me want to throw something every once in awhile - I am still living on my sushi moment from last cycle ...

I was thinking this morning ... each day gets a little better this cycle ... maybe sushi again later in the week.

Mkn, Hen, Faraway -- yay on the port placement. I remember mine hurt for a few days - then just faded into the background - unless of course you hit it the wrong way.

Faraway - your study sounds pretty cool, getting to see an MRI during the treatment - I asked about scans during chemo -- as I haven't had surgery yet either -- and it was a no go - said false/positives. Hmmmmm ...

Now.. I have to wait to the countdown to surgery to get the full path and response to chemo ....oh joy. Nerve wracking to say the least.

Paulette - You have only have a few more rounds to go -- you have got this!!!