Starting Chemotherapy March 2018
Comments
-
Thanks ladies for all the response hope y'all recovered from the SE ..I will post on my 2nd chemo this Tuesday have a great weekend hugs and kisses to all of
0 -
NVDobie,
That is also my question ..had my surgery already that's exactly the question on my mind how they can they tell chemo is working and what are the test they need to do. All I know is the root is been removed .
0 -
I posted this in the Weekly Taxol group yesterday but last night <as I was not sleeping> I thought I'd copy it here and in the starting in April threads: (I see some familiar names from over there--please do not think you have to answer twice!)
"Dear ladies--I'll officially join the group in a couple of weeks. I have an appt for patient education on Monday. In the meantime I have a bunch of questions, and while I could scour BCO and come up with a lot of answers, I thought I'd just post here. Most relate specifically to the first infusion.
(1) What did you eat the night before your first infusion? Big fun meal in a great restaurant? Or something light so as not to have a lot of food in your tummy through the infusion?
(2) Did you eat morning of? I've been intermittent fasting for quite a while so I don't normally eat breakfast. Is going in with an empty tummy a bad idea?
(3) What clothes do you typically wear? I'm a little torn between thinking I'll want to be like a kid and go in my jammies with a teddy bear, and wanting to put on some decent clothes and walk in with a bit of an attitude. Is a short-sleeved shirt required (I will not have a port)?
(4) I've read about water water water. Do you pre-hydrate the day before? I assume taking a pee during infusion is okay? How long after do you keep drinking a lot of water?
(5) Talk to me about Claritin*, mouthwash, and antacids.
(6) I have a weird fear of (or maybe distaste for) the big D. I've been surprised to read about so many women dealing with constipation. Specifically for Taxol + Herceptin, did you have any bowel effects? Anybody prophylactically take Imodium before infusion?
(7) I know exercise is important and will do my best to keep up with my routine, but is it weird to exercise the same day as an infusion? The place I'll go is across the street from a gym I belong to and in my head, at least after the first one, I plan to hit the gym for a bit before going for tx. Any reason this is a bad idea?
(8) I think I'm pretty good on what people actually do during the infusion but welcome suggestions. My MO pointed out they "have *great* wifi". She said some people actually bring laptops and work. I'm thinking maybe just an iPad to watch some Netflix or whatever? And maybe the newspaper? How much can you move an arm with an IV in it? I've only ever had them for surgeries and was always super careful not to move that arm much, but my guess is you can actually be more cavalier about it.
I know this was long, and will definitely ask these questions during my education session, but I'd also welcome any responses over the weekend. TIA!!"
*I was told on the other thread that the Claritin is for people getting Neulasta, which I will not be. Also, which day after tx would you say is your worst? Trying to figure out timing for an upcoming reunion.
0 -
Hi Ingerp - welcome and looking at multiple threads is a great idea! Here's a few thoughts from your questions:
1. Night before meals pretty normal - I need to avoid salt and since water retention can be an issue, might want to avoid anything too salty.
2. I have seen that some folks try to fast the morning of an infusion; I was advised to eat a light meal - particularly as you will likely be taking meds that morning (some may require something in your stomach), and it can help with nausea. But that may be drug-regimen dependent.
3. I also am getting infusions via IV (no port) and so you don't need short sleeves, but whatever you wear should be able to roll up at least to the elbow. I've had my 3 IVs on the wrist, lower arm, and mid arm.
4. - usually the IV is on a rolling stand and so you should be able to get up and roll it with you to the restroom (it's the kind you see patients walking around the hospitals with). Definitely pre-hydrate - the more you do the better you'll feel, and then it helps you flush your system faster.
5. Mouthwash, some places say us the salt and baking soda; I have had lots of success just with Biotene Mouthwash (which has a mild mint version). Rinse a lot. Your mouth will get really fuzzy and you may lose taste for a while. I think we all have a favorite antacid when needed. I'm a Zantac fan, but everyone seems to find something that works. Just have some on hand in case you need to take it.
7. I am not a big gym person but am a big walker. I have always walked the day of an infusion (after), as well as the day after.
8. Infusion time do what keeps you calm and not thinking about what's happening. It can be talking to the person who is with you (first time at least you should have someone with you, in case), reading, working, listening to music, etc. I think some folks try to doze - I prefer to keep a little busier. You can move your arm a bit, particularly depending on where the IV is placed.
Stuff I'd say that you didn't ask about - have a lot of really good moisturizer you like (your skin can get dry and weird), and have some really good cream/balm for your fingernails and toes. Your cuticles get incredibly dry and we aren't supposed to have them cut (risk of infection) during infusion. I use Egyptian Magic, but I know some folks like bag balm, Burt's Bees, etc. Again - just keep them soft and hydrated.
Finally, listen to your body. Not easy for folks, especially active ones, but when it tells you to rest, take that advice.
Good luck!
0 -
Gosh, Wcgirl--that was fabulous. Re: the IV--silly me for assuming they'd be in the arm. I forgot there are many places to poke! When exactly do you use the mouthwash? During? Or just after? How many times a day? Good to hear you walk after your infusion. My infusion place is across the street from a gym I belong to. In my head I'll go do a light workout before but I've also been wondering if there's any reason not to do it afterwards if that works better with my schedule on a particular day. Re: arm movement--roger that. Thanks for the lotion suggestion. FWIW, I put body lotion on every day after I shower and <everybody listen here> I use the best hand cream on the planet. I've tried everything under the sun, including expensive creams, but there is NOTHING better than Neutrogena Hand Cream--the kind that comes in a tube. I've been using it for, like, decades. Every time I get my hands wet. I keep like 4-5 sprinkled around my life. There is truly nothing like it. Love your final advice. :-)
0 -
Hi everyone! It's a rainy Sunday here in South Florida..thought I'd just check in real quick to see how everyone is feeling.
Today is my yuckiest day yet this round (day 4) . I managed to go shopping this morning at Trader Joe's with my husband, but when we got back I just crashed. I have been in bed since. The Neulasta bone pain has kicked in and my legs and hips are quite sore.. feels good to just lay in bed and watch TV at the moment so I'm listening to my body. I did fold the clothes while sitting in bed so that made me feel semi-productive 😆 I tried to nap but I just can't sleep.
Taste buds are off but I haven't lost my appetite. Food just isn't much fun to eat at the moment. I bought some real ginger ale this morning and that has been a nice treat throughout the day. Getting tired of water, but know I need to stay hydrated.
Overall I think this round is slightly easier than the first one just because I know what to expect and I know it won't last. I am hoping to go to work tomorrow but we'll see what happens. Last round by day 5 the tired/achy feeling wasn't as bad.
Quiltingnut—I will have to try the Benadryl before the shot goes off next time and see if that prevents the red face..thanks for the tip!
Ingerp—you got some great tips! I will second the importance of hydration and keeping active as much as your body will allow.. even if it's just a walk around the block. That has helped me personally so much. Oh and I love Neutrogena products too... have been using them since high school and always got lots of compliments on my skin!
Hope everyone is having a great weekend and/or getting some rest. xo
0 -
Checking in.
Same here. Worst day so far. Day 4 for round 3. walked dogs this morning but noticeable less energy than last few days. Afternoon was not pleasant, not pain, just feeling not well. Went to get some food which probably wasn’t good or healthy but I had some craving and want some outing.
Reminding myself the days will get better. Now sitting on the couch with my dogs and hot water bag.
Hope everyone is doing well. Weather is getting nicer and nicer, don’t forget sun protection if you go for walks.
0 -
I'm just catching up on the boards. Chemo round #1 knocked me off my feet. I ended up with febrile neutropenia and very, very sick to top things off. After a trip to the ER they kept me for five days in the hospital. I have to delay my next chemo by a week (to May 2nd). I am also using a scalp cooling system (Paxman) and am at day 20 post chemo #1 and am shedding a lot. I'm hoping it slows down soon. With spring coming maybe I'll find my locks in some birds nests.
NVDobie, I am also in Canada and was wondering about the tumor markers. I never had that test done. My surgeon said the same thing about MRIs and false positives. That being said, I have to go for MRIs periodically (right now every 6 months) to monitor a PASH tumor on my non-cancer side, which was found in my post-diagnosis MRI. I'm leaning towards prophylactic mastectomy soon.
Steph74, my taste buds were off starting about a week post-chemo, but now at day 20 they seem to be back to normal. Or maybe I'm just used to it? Haha. I have however noticed my eye sight is blurry. I am 33 and never had issues with my eyes before, here's to hoping this is temporary!
I am also eating whatever I want during chemo, which I certainly wasn't doing pre-diagnosis. I went from bring very active to doing almost nothing now. That will change after chemo. Although I was big into kickboxing for 12 years pre-op, and I'm not sure implants should get punched....My surgery was Feb. 1st and I was just given the go-ahead from my PS to "gently run" a few days ago. I'm too scared my hair will blow away if I do, lol.
I am very thankful for this board, and am hoping for better days soon for all of us! No one truly knows what we are going through besides others going through similar unfortunate events.
0 -
Hello Ladies,
Of to the hospital today for the 2nd chemo ..hope you all doing good today..
0 -
Yang, good thoughts heading your way.
I feel back to normal already and its day 4' . Shaved ny head last night, sick of cleaning up after my self. Worked all day and then cleaned out my car, it was around 70 degress here.
Question for everyone, I use sun block normally but are we more likley to burn now that we have chemo? Can someone explain more about the sun and how it affect us?
Trying to prepare for sunshine and water...
0 -
Chemo is postponed moved to next week white blood is low so Doctor said one week rest and will see..
0 -
YangSainst - I was thinking of you today. Sorry to hear you're having troubles. Hope things go better next week.
0 -
I have heard that we are more succeptible to burning in the sun during chemo treatments... But I'd have to look that up.
I'm not a sunscreen wearer... So I'm curious as well.
Sorry yang for having to delay treatment a week. They are doing the best thing for you by waiting. Do what you can to rest and be well ❤️
0 -
So.. I think I'm in the clear. NO BACK SPASMS and just tolerable aches in my bones. I am going to make sure to start Claritin 3 days before chemo... Since it worked for me this time!
Today is the same day of cycle that I had my worst day- last cycle. So if I made it this far I would think it's safe to say that I should be in the clear! Thank God!
I do have to take excedrine every morning for a headache... And that was the case last cycle too for about the first week.
Overall I'm feeling alot better about this cycle now!
0 -
Undrago71
we’re told to watch for sun exposure as we are going thru chemo and cancer treatment, they have many little one pager or little booklet handouts for us when we started.i am in Vancouver Canada, and Cancer agency here gives out lessons and lots of little handouts.
My understanding is BC is also making us more vulnerable to other type of cancer such as skin cancer. So I am avoiding walking between 10am -4pm. Minimizing risks. Also, chemo sometime cause patients to be sensitive to sun lights and possibly Weaken immune system further in some cases. Easy Sun burn happened to me. I am Asian so generally I don’t sun burn all that easily but notice skin flaking off and sun spot darken just with very short sun exposure. So I quickly adjusted my routine.
I have spf 60+ and wide rim hat on when I do go out. I still walk everyday but limiting my time outside during mid day.
Here is what I found online.
https://www.nccn.org/patients/resources/life_with_cancer/managing_symptoms/summer_precautions.aspx
http://www.breastcancer.org/tips/seasonal/skin_care
One note to mention is spf lotion does prevent vitamin d absorption so I take v D supplements.
Tough cookie
Sorry for the neutropenia, hope you feel better. “Moth”has shared a great list here which I followed to minimize my risks during chemo.
0 -
Bec-Ky,Hapa,Udrago71
Thank you girls I know they just want my safety I hope next week will be OK. I hope you all having a great day.
By the way is there some food will help to make my WB be back to normal just wondering. Thanks ladies.
0 -
We can certainly become more sensitive to the sun while on chemo. My mom got a bad sunburn while on chemo in 2009 with minimal sun exposure. Her face actually peeled. Mind you she was a redhead and sensitive to the sun as it is, and likely hadn’t put on sunscreen. After her face peeled she had less wrinkles! Silver lining. Lol.
Just wear sunscreen daily on chemo (as we should anyhow but I’m guilty of not doing 😬), and be careful. However still get out and enjoy the weather from time to time! Shade and sun hats might be our best friends in addition to sun screen during chemo. Also be cautious of woven sun hats with holes in the top because of your head. Just remember to slip a cap on underneath maybe.
0 -
Hi ladies,
I am about to have my fourth and last AC treatment this week (halfway done), then will start Taxol in two weeks. Can anyone give me side effects that seem to happen? I have handled AC fairly well with the worst of it being heart burn and sore mouth. Also, I was told the treatments are 4+ hours long. How does that work? I am only about 1.5 hours with AC. Thanks!!!
0 -
I just completed round 4 of A/C last Thursday. I am "really" struggling with eating. Everything I try to I eat does not taste normal and feels like there is a plastic/waxy coating. I am so hungry but nothing is appealing. How do I break through this taste and texture issue? How long will this last? : ( Feeling very sad and emotional!!
0 -
Oh man you guys, these steroids are driving me crazy. I'm super hungry, nothing tastes good, and my heart rate is through the roof (ok, it's about 70, but that's high for me). I have a headache and the mood swings are terrible. I'm not a moody person by nature and this is just...difficult. Last time I was in the nurse said "you get dexamethasone" and that was that, so it's unlikely they'll reduce it or give me something else. I think it's the steroid crash that's doing it, my last dose was on Friday night.
Undrago71 - I wasn't told anything about avoiding the sun. However, three days after my first chemo I spent a small amount of time outside, mostly in the shade, and I wound up with spots on my hands and face. And the skin on my hands was like paper, even the slightest brush against something rough caused it to bleed. So this round I avoided the sun like the plague for the first five days, I mean floppy hat, long sleeves, cotton gloves, sunscreen everywhere, the whole nine yards, and my skin is holding up better. I went out for a run last night at twilight. I intend to avoid mid-day sun as much as possible until I'm a few weeks out of chemo.
0 -
Hi All,
It seems we are all in different places this week. Blurry vision is now added to my list of side effects. It's very annoying, and not great for me as a teacher.
0 -
Hi ladies!
Going in for round 3 tomorrow. This will mark the 1/2 way point as far as Taxotere and cyclophosphamide. I am jealous of those of you who have 4 rounds. Not sure what dictates how many rounds we have to do. Back on the dexamethasone today. I have been eating everything I can't for the week or 2 after chemo. Glass of wine a day, spicy thai food, sushi. Tomorrow it is back to the bland and boring (and oddly enough I find myself salting everything). First round I ate very light the day before, day of, and day after. 2nd round, I did Prolon fasting mimicking diet starting 2 days before to 1 day after. This time I am going to eat whatever the hell I want. I really thought taking the claritin well ahead of chemo helped with the spasms and bone pain from the neulasta. I didn't know to take it earlier with the first round. Live and learn! MO suggested just taking it every day, as well as Nexium rather than stopping and starting. My white counts have stayed pretty good - first round 14K every week (but I got a bad cold on day 5), 2nd round a little low at day 7 (4K), then up to 14 the next week. My MO wanted me to do it because I work in healthcare. Saw someone today that seemed to have influenza, hope I didn't catch that.
I have also noticed my heart rate is much higher. I wear an apple watch, and my sleeping heart rate is generally in the 40's, and 60's during the day. Since chemo, I run about 20 beats higher. I feel more out of breath and weak. I don't sleep as well, going to ask for a sleeping med this week. Some night sweats, not as bad as first cycle. Period is late. Hoping it just doesn't come. Sex is more painful (yeah, I went there). I seriously have no filter, so hope no one is offended at my TMI.
Work has been crazy busy. I have done a terrible job of hydrating today, so going to try to make up for that now that I am home. It is a dreary day in NE. At least it isn't snowing.
I usually bring a book, iPad and earbuds to chemo. They start with the taxotere, because they ice my hands and feet. I can't really do much with that. Plus, after my first round (reaction) - they premeditate me pretty good with benadryl, more steroids, and ativan. I am pretty sleepy. Next is cyclophosphamide and last is herceptin. 2nd infusion was quicker than first - I see my MO at 8:30, then chemo. First round took 4.5 hours to infuse, 2nd one was 3.
I have been humbled by the love and support I have received from my community. Sometimes just a kind word and a hug gets me through my day. And I am grateful for the community I have found here. No one who hasn't gone through this can truly understand the rollercoaster we are on. Stay strong.
0 -
persnickety70 - I also found sex to be painful. Not sure if I want to try it again but I don't see myself going without for 3.5 more months!
0 -
Downdoggie—that stinks about the blurred vision. I haven’t had that but my eyes have been very dry, yet “goopy” in the morning. I also have a weird eyelid twitch on and off. They are also quite bloodshot looking. That happened last time too and lasted about a week. I use eye drops but they only seem to help a little. Hopefully my students don’t think I’m on something..lol
Persnickety—that’s great you enjoyed yourself with the food/drink. I do the same on my “off” weeks. I also notice a racing heart at times in the first few days post chemo. It’s worse after I eat for some reason and I also notice it when I’m trying to fall asleep. I haven’t found it too alarming but I guess it’s worth mentioning to my MO.
As for me, I had a much better day today (Day 6) after a very “blah” couple of days. Somehow I managed to work a full day yesterday despite feeling like I was in a fog a good part of the day. Slept pretty good last night so that helped. Today I have more energy and fogginess is gone. Taste buds still off.. though we got Dairy Queen after dinner tonight and somehow I could taste that perfectly 😄 Water or the thought of drinking water makes me want to puke. I have been like that since Day 4. Had to make a run up to the store for some different drinks I could bring to work.
A few differences from last round: my “bad days” seemed more condensed this time. This time days 4-5 were pretty rough and lasted all day/night but I’m ok today...whereas last time I didn’t feel like this til day 7/8. I had less achiness this time. I did take Claritin an extra day so not sure if that was why but I will definitely do it again. Also I only took Zofran once the night of chemo, whereas last time I took it for the first 4 days around the clock. Honestly the thought of taking it was making me queasy so I took chance and felt ok without it. I did have more food aversions this time. Not sure if that still would’ve happened with the Zofran but I just ate what I craved and i was ok.
Good luck to those who have treatment this week and hope everyone else is hanging in there! So glad to have you all here with me!
0 -
Steph74- did you stop the Claritin? Last time I think I stopped it too early and had some back spasms...I felt achy last night but nothing like the spams last time..maybe I will take the Claritin another day or 2. I notice my taste buds are more off this time...it isn’t stopping me from eating like a monster though lol. I think I’m craving taste!! And I don’t feel full because I can’t taste the food. Went for a walk today with the dog and then crashed for an hour and slept really well. I haven’t been sleeping well at night. I think it’s a combo of hot flashes from the Lupron and TE discomfort. Counting down the days til this is all over. This site is amazing and I’m happy it I found it. Good luck to everyone getting treatment this week. xx
0 -
May07- yes I stopped the Claritin now, but last round I only took it for 3 days and this time I took it for 4. Again not sure if it was the extra day that made the bone pain a little better but I’ll definitely do it again next time.
I think my taste buds are finally starting to return today. Not 100%, but I had a little coffee this morning it actually tasted pretty good.
0 -
May- craving taste 🤣🤣🤣🤣
I totally relate.
Maybe I should chew a lot of gum instead of eating everything that catches my eye!
0 -
Hi Ladies, I am gearing up for TCHP Round 3 tomorrow--then I will be halfway done with chemo. I saw the oncology nurse practitioner yesterday and she was very helpful. She showed me a couple of options to "stretch" my steroids out and hopefully lessen that Day 3/4 crash. This round I will take my usual 2 in the morning and 2 at night day before tx, but instead of doing the same on Day 2 I will take 1 in the morning and 1 at night both Day 2 and Day 3. Still taking the same number of pills, but trying for a gradual drop-off.
The NP also gave me a rx for Lomotil since my D was so severe after Round 2 and scheduled me for fluids on Days 6 and 9. Hoping these changes will make this round a little easier. I am still pretty anemic which explains why I'm so tired all the time and get winded during my walks, but all of my other numbers were pretty good.
Persnickety I could have just about written your post including being a little jealous of those that have 4 rounds instead of 6, eating everything you can while you can taste it and sex being painful.
I hope everyone that had treatments last week is feeling better and good luck to all this week. I'm going for Greek food for lunch today while I can still taste it!
0 -
Hi everyone -
Steph - glad that Round 2 seemed more condensed - that happened for me and then Round 3 was even a little more tolerable, so we must get a little used to it.
Downdoggie - I get blurred vision each round for about 10 days - eyes kind of watery. Still wearing my contacts although I need to change them more often.
For the lack of taste issue - on the days when my tongue and mouth feel like they're covered in a film (no texture, no taste) - maple syrup seems to cut through it. The real kind - for some reason it is the one thing I can taste - and I have it with pancakes, which have no taste or texture but I eat them anyway! Water does taste off for several days - I add lots of lemon/lime/cucumber and it seems to help make it more palatable.
So glad the Claritin is helping folks! It surely did for me with joint pain and especially the spasms. May07 I actually have been on it 10 straight days last 2 rounds and it really helped. Bec-ky so happy to hear you didn't have such terrible spasms.
Persnickety - love your enjoying the good week! Had a really nice glass of wine last night and it was wonderful.
hapa - my heart rate is faster than normal too.
Finally, I am in the sunburn crew - walking in the little sun we got to enjoy in New England the past few days and although I put on sunscreen, apparently I didn't put enough on my hands, which has never been an issue even for fair-skinned me, and burned my left hand. So I would echo - use lots of sunscreen with high SPF everywhere. Used a ton yesterday and it helped a lot.
Ladies, you are all such an inspiration, and being able to read and share experiences good and bad is so helpful. Have a great rest of the week!
0 -
Good Morning everyone! Day 8 for me and so far my 2nd round had not been as bad as first. I’m hoping rounds 3-4 do as well. No back spasms this time, just achy and fatigue. I don’t take Claritin as it gives me heart palpitations but I’ve been taking Benadryl off and on and it does seem to help plus helps me sleep at night. Hoping everyone else is having an easier time this round.
0
