Starting chemo April 2019
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Hello,
OK so first post, although I have been "lurking" for a few months gathering tons of really great information/tips and inspiration. I have remained as positive as can be through this journey and will continue to be, focusing on only the next thing I have to do to get through it. And now that is chemo. Everyone here is so supportive and I just wanted to finally take the plunge and join in.
Found out last Friday that mu oncotype score was a 25. At 49 (two weeks shy of 50- so still 49 lol) I still have a lot of life to live and want to do all that I can to beat this for a long time with no regrets. Was somewhat hoping for a low score but I think in the back of my mind I was worried about what might be lurking as I did have LVI. so at least this gives me some peace of mind that I have done all that I can and I hope for no long term SE's. I did choose lumpectomy so we will have radiation and Tamoxifen. But that is down the road and trying to focus on chemo 1st.
So had my 1st of 4 rounds of CT yesterday and still feeling okay today, went to the gym this morning and hoping to be able to keep that up. Biggest issue yesterday was my own nerves, but now knowing what to expect it should be better going forward. From what I understand the next few days might be iffy so I am working from home as I am not sure what to expect this first time through. Going for my neulasta shot later today. Do most of you do this injection themselves or have a nurse do it? From what I understand they are going to show me to see if I can do the next 3 on my own. Not sure how I feel about that.
Hair - well it was long, I cut it shorter but I think I will have to go shorter again once it starts to fall out. Not going to go the wig route, bought a bunch of hats! and still shopping lol!
Well I set up my profile pretty quickly as I should be working right now...hopefully all my info shows below - if not I am sure I will figure it out! Hope everyone has a great day.
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stayingpositive, thanks for taking the plunge of actively joining our community! We hope you receive the support and encouragement along the way. Not an ideal way to start your 50's., but know we're all here for you
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Welcome staying positive. Glad you joined us but of course wish you did not have too! Here's hoping for minimal side effects throughout treatment!
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Enough about SE's and hair loss, let's talk about fun stuff!! Like what are you doing to treat yourself during or after you are done with chemo. Any trips planned during or after? Things you are going to do that you have always wanted to do?
I had thought of buying myself something after each chemo. Just a cool necklace or bracelet as a treat. I have not really done that yet so now I am thinking a kayak after a/c is done so I can enjoy it during the summer....all covered up of course due to sun sensitivity!
We are going on a family vacation to Lake Norman, NC during an off week when I am on taxol (mid June)....I will be all covered up again! We have not done a family vacation in two years for a variety of reasons and we need one! Hoping for another get away after taxol before radiation starts.
Anyone else have any travel plans or ways you are treating yourself for making through treatments?
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I think a fun thread is a great idea. We are planning a 2-3 week trip seeing Montanta, Glacier Park and Yellowstone. We have a travel trailer so that will be our home for a couple of weeks. We are planning on August, hope to be done with radiation by then. Since we won’t be buying air tickets or cruise reservations, we have more flexibility on when we leave and if I’m still feeling any SEs. Can’t wait
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Stayingpositive2019, I'm on TC treatment too, ilovermont and robonredbreast too. I'll have my second next week. I was good day of and day after. Third day started fatigue, next two days was in bed or in the recliner. Slight nausea, stayed on my meds. I have to give myself (actually my husband) the Zario shots (similar to Nulesta) for 5 days. Took the Claritin for bone pain, I had very little. Just a few zingers as we call them. By the end of second week, I was feeling pretty good. This week feel normal. Just my sense of taste is off. I can taste sweet, carbs and coffee. But meat, spicy or sauces, blah. And my hair started coming out yesterday Day 15, more so today.
You arefew years younger than me, you should do great with that positive attitude!
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I'm only about 2 months into my dx, hadn't thought of what I want to do after, honestly. Last time, I wanted to relearn to knit (done), take the kids to Washington DC for a week (done), leave a waitress a $100 tip (done), go to Ren Fair (done twice), attend Pride (done), hit some concerts (done several times over)...Hm. I might take a pottery class. That sounds interesting. Ooh, there's a place that will teach you basket-weaving in Pennsylvania, one of my neighbors told me about it. Really, I should resolve to make a better effort with my mother's birth family, go meet more of them. You know those ancestry DNA kits? Well, my mother was adopted and I found her birth family via Ancestry DNA after my first bc dx. I've met 4 of my new aunts, but there are scads more relatives who live around Pittsburgh. They seem like nice people. Not their fault I can't get over being Scottish (by a lot), but my, does that ever bug me. Been Irish my whole life (on my father's side), but Scottish, that was a bridge too far? LOL
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Hi Stayingpositive2019. Welcome! As DebraC mentions, I am on TC every 3 weeks too. First few days was ok after first infusion, then the bottom fell out for me on days 5,6,7. No nausea, but intense headaches and throbbing body aches. Neulasta was given via OnPro automatically 27 hours post infusion. This week (today is day 16) I feel pretty normal.
Trying to get all things prepared for next round (on April 23), cleaning house, meal prep, etc. Youngest daughter graduates with her bachelors in nursing next month. Should be during my feel good week before round 3, so pretty excited to celebrate that big day with her.
Future/post chemo - already had radiation, so I will be taking aromatase inhibitor after chemo. Anyway, Our eldest daughter and her husband are planning to bring their family for a visit over July 4th holiday week. MO says I should be able to jump in the lake by then (we live on a beautiful lake) whohoo! In October, hubby and I are planning to ride our bikes (we each ride HD - RoadKings) to Pensacola Florida to visit some friends. Then in Spring of 2020, in celebration of our anniversary, we are taking a 2 week cruise of the Mediterranean (been planned for a while).
Rock on!
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Thanks everyone! It is great to hear everyone’s stories and know that we aren’t going through all of this alone. I feel like I have so much support at home and at work but you can never have too much you know? I have found so much useful info through all of you, helps to know what to expect
When I found out I had to wait 3 weeks for the oncotype test result I went to Jamaica with my husband! It was nice to have a week to relax and have some conversations that did not revolve around cancer. I actually read three books. It was wonderful. I think my summer plans are little in the air, but there will definitely be something after this.
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Hi Everyone- I have been reading and trying to catch up. Sorry I have not been more active. I have had so much work to try to keep on top of and catch up with. I am a professor and this is our finals week so I am in a huge grading crush these two weeks.
It has been good to read about others treatments. I finally had my first round of A/C last Friday(12th) and it did not go well.
I thought I was prepared for whatever happened. I am wondering if anyone else had significant side effects on the day of administration?I had such severe chest pain/pressure and the worst reflux/heartburn of my life, about 3 hours after treatment. Even while they were pushing it, I told my nurse about the pressure and she said it was normal. I also had an intense rush and burning sensation of strong chlorine in my nose/sinuses and then a severe headache that lasted the whole night. That burning is still there mildly, and I have had low level headache ever since.
I was so distressed, thinking day 1-2 would be ok, and anticipating day 3-4 to be "bad". By Sunday, I was feeling better- just completely wiped out. I wondered if these things happened to anyone else on the "day of" and what helped?
Did you guys get any supportive IV fluids the day of, either before or after? I did not, and I think it could have really helped.
Thanks in advance for reading. It is helpful to me to know there are huge variations in what to expect.
Karen0 -
Hi SaltyPepper,
I'm sorry to hear of your first day experience. I DID have significant heartburn within 3 hours of infusion. It lasted for a day or 2 then went away. I have a history of reflux and heartburn as well, so I thought perhaps it was amplified (I've heard the saying from others that whatever your Achilles heel is prior to chemo treatment, it will be magnified during treatment). I had terrible headaches and throbbing chest/body pain on day 5, 6 and 7 (not during infusion or day of). I was told however, it was a result of the chemo infusion and was given steroids to take for a longer period post infusion next round. I was not given any fluid supportive fluids, per se, greater than a 50 cc bag of NS between agents. But it DID drink TONS of water during infusion (emptied a 64 oz bottle of water, plus).
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Thanks RobinRedBreast
I am not usually prone to heartburn or reflux but did start taking Pepcid AC that night and it helped and stayed on it for the next 2 days as I could feel it creep back if I missed a dose. Did you experience that chemical burn sensation in your nose, leading to the headache or was a "regular" headache? My nose still stings some and my eyes feel filled with cement. The nurse said they can push it slower next time, that it sometimes happens to people. I took 2 tabs day 1 & 2 and then 1 tab day 3 & 4 of steroids- what was your plan?
I wonder, if there is a chance of issues with these fast infusions, why not just slow it down for everyone and avoid some of the problems? Does that extra 30 minutes really make it worth the risk or SE for some? I guess time is money.
It is funny that you did not receive extra fluids either- some others on a FB group I belong to say they always get a liter to tank them up. Seems common sense to me, as I am terrible at drinking to begin with and then when nauseate and heartburn on top of it... Very hard to get the water down for me.
I guess it is a learning process for us all!
Karen0 -
Hi Karen (just noticed your name),
My headache was nothing normal by any stretch of the imagination. It was similar to an ice cream headache, which all I could do was hold my head in my hands until the Tylenol took effect (which took the edge off). I don't normally have headaches, nor do I typically take Tylenol (I take Ibuprofen). Once I got ahead of the headaches (taking Tylenol every 6 hours routinely) the head and body aches were much more tolerable. Yes, thank goodness for Pepcid! Pepcid is a stable in my GI arsenal.
About the push. The medication that caused my problems was not pushed but rather infused over 90 minutes (Taxotere). I think this may be the difference with the burning sensation. I agree with you... one would think they would slow it way down for you if you are experiencing SE's. The fluid bolus isn't a bad idea either.
My steroid regime was 8 mg BID day before through day 4 then stop. For round 2 I will continue the steroids through day 9 (tapering down). I sure hope it helps with the Headache and body throbbing. Ironically I never did have nausea.
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So I got a UTI and now have to start Cipro, and I've been exhausted. Still able to work but need to take a nap right when I get home. I also realize because round 1 went so well I let down my guard and I probably didn't hydrate enough for round 2. I was feeling so strong, but now, blech. Also my hair is mostly gone but somehow my scalp (and legs) feel slightly sensivity and irritated--like the little hair that is left is always rubbing in the wrong direction. I also am losing weight, is anyone losing or gaining so far during this? No mouth sores but nothin really appeals that much.
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Lady I was in treatment with last time, who was my son's (retired) teacher, had horrific migraines every treatment day. Nothing but a dent in them either. Eek.
Salty...Karen...lots of us Karens, LOL...perhaps talk to your onco about getting a prescription-strength prilosec? Is what I'm on, daily. For chemo, I mean. I never had any heartburn issues before.
Far, hope you start feeling better fast!
Anyhoo, check-in today for blood panels, which were all good, but even better, after only one spa day, my lymph node is now barely palpable, when it definitely was before. I'd guess it's half the size it was, possibly even less, and what's left feels very smooshy. Considering it started at 2cm, that's pretty impressive. Also kind of funny. On spa day, I dress up, but my bra & foobs kind of got in the way with my port? So I didn't wear them today (sometimes I don't, just whatever I feel like that particular day). Anyway, the nurse was all, girl, you lost 3lbs and very frowny until I pointed out my MIA foobs probably weighed around that. Foob weight. I have foob weight. LOLOL
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Yes- lots of Karen's!
Seems our name is the butt of many a middle age woman making fake trouble memes these days too! I always want to say "Not all Karens!" but it goes against my activistic nature.
In any case- I will be pre medicating for certain- and will tell them that which ever is the one run on the pump, it has to be slowed way down.
Which one is which by the way, I should have asked?? I am receiving A and C. I had several syringes of a red cocktail manually pushed (which about exploded my chest) and then followed by about 50cc of IV pump infused medication.(like snorting straight chlorine) Not sure which is the A and which is the C?
Who knew falsies would be a quick weight loss solution?
Salty Karen0 -
The red stuff is the A, also called red devil.
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Sorry so many people are having the headaches and heartburn. Sounds like you are figuring out ways to make it better or to prevent it.
My first infusion, I got 1000 cc fluids. Only had one really bad day a couple of days afterwards. The second infusion was only given 500 cc plus the meds. I had three days of low blood pressure. I asked the doc to go back to 1000. I had my third infusion on Wednesday so we'll see if that had any affect. I try to drink 3-4 glasses before starting.
I hear that not getting enough fluids can cause UTI with Cytoxin. Try drinking more and adding cranberry juice might be helpful as well.
If it wasn't so traumatic, I might laugh at the ever-evolving side effects. You really can't get used to it being one way or expecting the side effects as they change every single time. I guess we really are very strong and adaptable creatures. We survive no matter what. Hang in there!
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Saltypepper - sorry your first infusion had so many side effects. Hopefully slowing the infusion will help next time. I hope you get some good days before your next infusion. Sounds like this was not the time for bad se's with all you have going on with work right now!
Farfalla6 - sorry to hear about the UTI. I am finding I have to force myself to drink more. Nothing tastes great so it is hard. As far as weight, I think I gained 2 lbs. Hope that is not a trend!
I am day 4 from a/c number two and not feeling bad. My hair is shedding like crazy so I am sure the buzz cut will be coming this weekend. I got my period this morning which I thought might not happen while on chemo. Guess she is not giving up without a fight. I am cleared from surgery to go back to work on April 29th. I am sure that will add to my fatigue but it will be nice to focus on other things.
Hope everyone has a beautiful Easter weekend!
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I thought I'd check in. I am day 22 since starting AC. I am day 9 of 2nd AC.
Honestly, I am surprised my SE have been little to none. My biggest struggle is with the balance of taking Colace vs Imodium. I don't have extremes of either, but because I try to get out ahead of any issues there, it's trial and error. The chemo isn't as constipating for me as it may be for others, but I still take the OTC meds for it bc that is one painful SE I can do without!
I also thought I'd give a hair update. I am cold capping w Paxman, now through 2 cycles of AC. Shedding started around day 16, and I would say I have retained 50-60% so far. I will continue as long as I retain enough. My hair texture is awful now, I had a huge head of thick hair, lots of body. What's left is thin and breaks easily, tangles easily. I'm not supposed to wash often, use hair dryer or curling irons. The positive side is that I can throw on a baseball cap and have my hair sticking out underneath. My job requires public events and I had two this past week, so I wore the wig and I got many compliments. Not sure they could tell it was a wig,it really looks like my regular hair, just a cuter cut/style. My hope is that the capping will help with quicker regrowth post chemo. The sooner I get my real hair back, the better.
Really sorry to hear about side effects for some of you. The suggestion for extra IV hydration after chemo is brilliant. I think I'm going to ask for that for round 3. I am pretty good about hydrating, but right after chemo water tastes gross. Hydration is big, IMO, to avoid or minimize the SE. I am going to do the fasting mimicking again for R3. It seems to be helping me so much w the SE. I am bracing for R3 of AC next Thurs as I have read on here it can be tougher than the first two.
The fam and I are just starting to discuss travel. I won't finish rads until late Oct or early Nov and my oldest will be a Sr in HS so we may just do a trip after he graduates next May!
Wishing all an SE free weekend! Stay positive my warriors, we are strong, we are fierce, we WILL get through this. MM
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All caught up finally. Had round 2 AC on Wednesday. Hair has just started shedding today. Will probably buzz this weekend. Haven't wanted to do it before it started coming out. My scalp feels a tiny bit weird, but only if I think about it. I worked yesterday and felt pretty good, just tired. Today I am a bit worse...more nausea and fuzzy headed. Expecting to have another rough weekend.
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Ahhh "The Red Devil" won't forget that now! Thanks for everyone sharing updates and things they have tweaked. It is good for perspective and a good advocacy starting point for myself too!
It is interesting- today I was just thinking that as awful as the SE were (and will likely continue to be), it is a little weird how all of this can be a new normal. It is like we (kids and I) were expecting this huge life change. Yet, really nothing has.
It feels actually strange that I am not "sick" and that for the most part still 99% of the people in my life have zero idea I even have cancer. I buzzed my long hair last week the night before treatment but I have not posted anything at all about having cancer and did not publicly post a short hair picture on FB or anything.
I guess it all just seems a little surreal at times.Karen
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Hi All,
I hit the wall yesterday, 3rd day after chemo, blurry vision, very dry mouth, achy bones, diarrhea, headache, very tired. Taking the meds helped, (Claritin, Imodium, pain pill) I also, tried to drink a lot of water, and ate a little dinner. I slept most of the day. Feeling much better today, tried, dry mouth, little headache and diarrhea. Good luck all.
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I also hit the wall today, day 4. Super nauseous, exhausted. Spent the day in the couch. Might be coming out of it now. Trying to sit up and spend some time with family. My scalp is super tender and nothing tastes right. So does taste come back between treatments or is it gone until the bitter end?
Sorry to hear about headaches. I also had one today. I am hoping that was the worst of it. I am also prone to uti’s so will make sure to extra hydrate.
Hope everyone has a nice Easter. Rainy and dreary here today in Toronto, Canada.
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It comes back in between!!
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ok yay!! That is something to look forward to. Lol
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hi I also started 3 days ago. Same treatment. Day one and 2 were so good. Today not the greatest. Have heavy chest and just feeling tired and down. How are you all doing? Tjanks for letting me just barge into this group. It is all so scary when you dont know what to expect and what is normal Se.
Deb
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So I will begin chemotherapy in May 2019. How can they tell if chemo is effective if your breast and cancer have been removed??
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that’s what’s so tough. It reduces but does not eliminate the chance that it recurs. It might not recur without chemo, it might recur even with, but chemo improves your chances, it can get a stray cancer cell that may have already escaped the tumor and hidden somewhere else in the body
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Hi all! Just had my third AC Thursday. I learned after my first one that staying hydrated was the most important thing!! I usually feel the worst the fourth and fifth days. By the weekend in between I am feeling good other then being tired. When I get the C part of my AC chemo they run it over an hour. The nurses told me some people like to get it faster but that is what causes the side effects like sinus pressure and headaches. So I just tell them when I go in I want it over a one hour period.
I have found Biotene mouthwash and ACT lozenges have helped with dry mouth. I took Clairetin after my first round of Neulasta but found it made me light headed and dizzy during the day so did not take it last time and thankfully had no bone pain! It was so weird but my hair came out fast! By day ten after first round I had to shave my head! But mornings are so much faster!! 5 min shower and pop my wig on 😊. It does seem to become a new normal. Deal with the side effects as they come and keep on going.
I hope everyone has a beautiful Easter weekend.
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