Starting Chemo March 2021
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Mimi642, I haven't gone through radiation myself but what my oncology nurse told me is that when you get through chemo if you still need radiation "it is like a piece of cake" in comparison to chemo.
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I've been very miserable for the last few day - painful gas cramps and constipation. Do any of you who have Not suffered with gas have any suggestions for what I should try to eat? What food did you eat before, during, and for a few days after the infusion? I haven't done a good job so far.
Thanks,
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Hi cthea2010- I did have a double mastectomy due to having 3 tumors in one breast and 1 in the other, plus I am BRCA2 positive. We weren't sure I would be a good candidate for chemo until they ran the Oncotype test because thankfully my lymph nodes that were removed were all negative. That test said that my risk of future cancer was high enough to warrant chemo. Honestly the surgery wasn't very difficult to heal from, just limiting in terms of movement. I am having a much more challenging time with all the side effects of chemo. I have written my nurse today to ask about alternatives but didn't hear back yet. I will keep you posted.
Today is day 12 for me and the hair has begun its exile! I am fine with shaving it (already did that in my 20s) as soon as it warms up a bit. Hopefully this weekend we will be in the 60s here in Wisco. I just don't want to watch it falling out in clumps. Already I am surprised by the emotions it is bringing up. Loss? Fear? My eventual inability to hide the depths of this experience and it's damage? Observing myself is never dull, especially these daze
Rest well everyone. Thanks for being here. Sending you all much love and sisterly support.
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Hi HopeHeal,
I watched the videos! Wow! That was so awesome that she was able to do that and so brave that she said no to all the toxic drug therapies like chemo and radiation. I hope she's lives a long, long time! I talked to my dr. today about all my concerns, plans, fears, and asked all my questions (although I thought of about 10 more after I left). I didn't start the chemo today, but I told her that I would give it a try and she agreed that if I have a really rough time with it like I did with AC then she will take me off of it. She said even tho, by just looking at the numbers, it would appear that my tumor only shrunk 30%, that you can't really measure a 3D tumor that way, so she tried to explain how she measures the volume of the tumor and then somehow she got the calculation that the volume when I was dx'd was 0.25 and now the volume is 0.5, so that is 80% shrinkage. Sounded very hocus pocus to me, but what do I know?!? I still would like an MRI, but she says it's not necessary right now, although I think it is. She kept telling me that I shouldn't experience any nausea with the Taxol (Im not sure if it's spelled that way), and that if I experience neuropathy that doesn't go away after a day or two then she will take me off of it. She wants me to take the steroid Dexamethasone the day before the first Taxol (3 at breakfast, and 2 at lunch) and not to take anymore after that. She said it's to prevent an allergic reaction to the Taxol. She's not going to give me Carbo since it shrunk 80% in volume and she thinks if she gives me the Carbo with the Taxol that I will experience nausea again. I am truly dreading doing this for 12 weeks straight, but I am going to give it a try. If I have any nausea or any bad side effects that I just can't tolerate then I'm done with it. I asked her about double MX and she confirmed that I would need the chemo even with that. She said the chemo isn't so much for the tumor in my breast bc the mastectomy is going to remove all that, it's too hopefully kill any cells that escaped the tumor and are roaming around in my body looking for a place to call home. She said that especially with tbnc there are cells that escape from the tumor and they are so tiny that they don't show up on imaging, but since the chemo is systemic, it will find and kill those cells, hopefully. Again, sounds hocus pocus to me, but.......?!? Also she told me that if I don't do anymore chemo there is a 20% less survival rate. That's not what I've been reading, but ok...sometimes I wonder is all this for my survival and my health, or is it all for the love of money, that everyone from the pharmaceutical companies to the doctors, specialists, and surgeons get to pocket. I'll never really know...
I'm doing the first Taxol treatment of 12 this week...0 -
Wow LoveNow! You have gone through a lot and seem to be handling it well! Thanks for sharing about the double MX, I've read that a few times already that the surgery and recovery isn't as bad as the chemo, that alone says how toxic and awful this chemo really is! Are you doing AC right now? Yea, the hair loss....it is hard...you really put it into perspective when you said "My eventual inability to hide the depths of this experience and it's damage" That is so true! I got my feelings hurt quite bad today, when I was in the car in my garage and my daughter was about to drive me to go get a mango smoothie and before I had even put my head scarf on, she pulled out of the driveway and into the street, and there I was in plain view with my bald head, I know it shouldn't have mattered to me, but it did, a lot. I asked her why she pulled out of the garage before I got my head scarf on and she got defensive and said it's not a big deal, no one was even outside, but to me, it was a big deal. When I got past my hurt feelings, I explained to her that this is my bald head, and Im the only one between the two of us that knows what this feels like, and I want to be the one who chooses if I show it to the world or I don't. I wasn't upset about it but for sure I do want to be the one that makes that choice. For me, looking in the mirror and seeing myself like this, it is like looking into the eyes of my mom and my grandma, and seeing all the pain and suffering they went through. I don't want to see that, but it's what I see. I don't see the me I've known all my life, anymore, as much as I want to, I don't. I hope one day that will change...please let me know what your doctor says about any alternative treatments! I'm hoping the best for you!
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Hi Aram,
Yea, that's what my doctor keeps telling me, that the AC is much harsher than the TC. She told me today that she's not going to add the Carbo to the Taxol because she thinks the Carbo will cause me nausea. She said that the Taxol shouldn't cause me any nausea and that if it does or it causes me any SE that I just can't deal with, she will take me off of it, so I agreed to at least try it; I'll be getting my first dose this week. I have tried may other drinks, even though I didn't like them before chemo, like Gatorade, powerade, flavored water, mineral water, apple juice, ginger ale, teas, sprite, but I haven't tried coconut water, so I'm going to buy some tomorrow and try it. Thanks for suggesting that, I hope it works! I hope you breeze through your treatments and have a full recovery!
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HopeHeal,
Im not sure if it's just sensitivity to the toxic chemicals in drugs and chemo or if it was the AC itself. I sure hope it was the AC itself! Funny thing about lidocaine which the dentist gives, I need a ton of that for my mouth to be truly numb, and the same with lidocaine when I got in my head to numb it so the dr could remove a lypoma from my scalp. He gave me 4 shots of it in my head and after about 15 min it wore off and I felt the pain again. I think Lidocaine is the only thing that I've ever gotten that I actually need large doses of, every other medication I've ever taken, I needed the lowest dosage bc my body couldn't tolerate the regular or stronger dosage.
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Hi NatureYogi!
I love that username btw! I love nature and yoga too! Thank you for your kind words, I greatly appreciate i! Yea, the AC definitely made me tired. I was a daily walker/hiker/bicycler (I especially love bicycling) and it has been hard not being able to do those things that I was able to do just a few months ago. I'm going to try those seabands to, I've heard about those, but have been very skeptical...hopefully they will work! I have tried watermelon in my water and I didn't like it, but what I do with the watermelon is cut it all up and put it my blender with nothing else added to it, and blend it all the way down to a liquid and then I have fresh watermelon juice and I drink it like that...its delicious! I have tried to eat other fruits that I ate before chemo, like strawberries and my stomach just cant tolerate them right now. And anything lemon just tears my stomach right up and gives me heartburn and acid reflux. Are you doing TC after the AC? I hope you breeze through your treatments and have a full recovery!
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Mimi642, I haven't gone through radiation yet but I was told by my radiologist oncologist that radiation will make me tired and affect my skin and tissue, possibly my rib bones, it carries a pretty high risk of lymphedema too, but it will be a much more tolerable treatment than chemo. It will probably make reconstruction complicated. It will reduces my recurrence risk by up to 7%, so I can't skip it.
Heliosue, I'm not sure if any ofthis will help you but this is what I've done (I've only done one cycle, with some issues, so I'm no expert). I hope you get some relief soon.
Medication : my MO put me on prescription Omeprazole (steroids causes upset stomach) just before starting chemo, and recommended Mylanta as needed, I've needed it and it helps. I also chew on Tums as needed. I took Miralax daily for a week after chemo but I'm going to try Senokot-S this round because Miralax didn't quite seem strong enough.
Liquids: I drink a large cup of peppermint green tea every morning when I wake up, and drink water or Propel water (about 72oz/day). No carbonated drinks.
Foods: The chemo nurse told me not to eat too much fiber while constipated, to focus on liquids and not hesitate to call if it lasted more than a few days. I limit dairy intake to cottage cheese, and not daily. I eat "watery" food, cantaloupe, mangoes, cucumbers, lots of squash and zucchinis (you get the idea). Lots of plain chicken. I don't drink from a straw and I chew my food a lot.
Lifestyle: I walk or ride a stationary bike even if I don't feel it, and I sleep with my head elevated because I had heartburn after chemo. I also remind myself that this is all temporary and going through it is my only option! I believe that you can do this! I'm heading to my TC#2 treatment now, hope everyone has a great day!
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heliosue, have you talked to your MO about it? I had stomach issues and he prescribed medication and it was gone in two days.
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Going through Chemotherapy?
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Thanks, Aram what meds did he put you on? I used to take omeprazole. I'm seeing my MO this morning,
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heliosue, for stomach problems he prescribed Pantoprazole
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Hello Cthea2010 - I am real sorry you are having so much trouble with AC. AC is not fun but it will kill all the dreadful cells. With regard to nausea, back in 2014 my oncologist gave me Zofran, and it seemed to not work that well for me. So we asked for compazine - an older anti-nausea med - but it worked for me. You may want to ask for it. Also, my oncologist had prescribed Ativan. What Ativan does is help mentally and prevent you from the feeling of gagging or getting sick. Both of these worked pretty well for me. I had a very heightened sense of smell and everything grossed me out. I found eating cold ground turkey or chicken and cold cooked vegetables to be the easiest. I used to eat a poached egg or vegetable juices as my breakfast. I could not tolerate anything greasy or fatty - not even butter. Also, I liked the vegan pizzas with non-dairy cheese. Really bland, but it worked. In the morning, I would also drink boiled water with some lemon in it. I was a serious coffee drinker and went cold turkey on the very first day of chemo. Never even missed it. You hopefully have only four rounds - just try to experiment and see what works. And don't hesitate to tell your team of doctors what is bothering you. Once you go to taxol, your appetite should return to normal.
I'm starting treatment with cytoxan and Taxotere tomorrow and who knows what that will be like.
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He says diverticulits is trying to rear its ugly head. I drove down to his office San Bernardino this morning where they put me on an IV, Needed more fluids He had them give me an injection of an antibiotic and also gave me an oral prescription The antibiotic worked REALLY fast. Don't ask!
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No joke heliosue. You did the right thing. Every pain I get in my lower left abdomen scares me.
Ctthea2010, I am truly sorry you are having such a rough go at all this. I totally hear you on how you are weighing benefits to risks and quality of like. Our dxs are different and I'm older than you iirc, but all that you wrote about your feelings could have been me talking. I went ahead with chemo #2 today, reduced and with more checks in place. But if I have another major issue this time, it will be very easy to cancel the remaining 2 cycles, and head to radiation.
Speaking of radiation, I have a friend with a slightly different dx as mine, who did not have chemo, just lumpectomy, radiation and now tamoxifen. The radiation burns and dries your skin (she is porcelain white), and causes quite a bit of fatigue. The tamoxifen has been worse for her with side effects. She is pre menopausal, I am post. Incidentally, her final radiation treatment was on my surgery day!
So far TC #2 day one I'm just feeling foggy headed, heavy, and tired. I have not taken any meds other than what they infused this morning. Not feeling nausea yet. I have a pretty weak stomach I think. I have motion sickness really bad. I think I'll try to get some sea bands.
For the others who posted, I read all your posts and I wish there was something I could do to ease your burden. This just sucks all around and there's no denying that. I thank you all for being vulnerable and sharing your experiences with us. It truly does help.
I received some perspective today while waiting to go back to infusion. Started chatting with a young girl/woman who obviously was being treated for something. She looked to be mid 20s, but that's hard to tell. Her mom was with her. She asked me what kind of cancer I had and I told her. I asked her...she had brain cancer. She's been treated a lot for it, many many months of chemo. And had trouble finding words to answer my questions sometimes and would look to her mom for help. She showed me her sweater which said Fight for Kristen. I told her I would pray for her, and she said she'd do the samefor me. Such a lovely bright light struggling through this. Cancer freekin sucks BIG TIME.
Stay healthy ladies - listen to your bodies - we'll get through this.
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Ladies, I have a question about working during Chemo. I will most likely start chemo for IBC, triple negative BC soon. Based on your experience, would you recommend that I keep working (~70%)?
I work from home on my computer, not too stressful but at times it is. I want to keep normal, but wanted to see your opinions on this. I have good sick time coverage. I will take a week or 2 off for surgery in the future, but wondering about chemo. Thank you, best wishes to you all!
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mamacure,
I’m sorry you find yourself here, your mind must be racing with such a recent diagnosis. I would not recommend working through chemo if you don’t have to.
My plan was to work as much as possible, to keep things normal and to keep my health insurance and my pay. My high anxiety needs me to do “normal stuff”. Working feels normal. I started with surgery and found it somewhat easy to recover from. With chemo, working feels completely wrong, my mind is sluggish, every day brings a new side effect, I feel like my body isn’t mine. And overall I’m doing fairly well, but I need to be paying attention to what my body needs. I’ve decided to step back from work a lot more this chemo cycle. I’m figuring the money part out (hopefully).
I’d say try to work, and be kind to yourself and step back as you need if you have that option. I truly wish you the best in dealing with this new normal!(For reference my job is office work, in person, good health insurance, good amount of savedsick time but running low by this point)
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Hi mamacure. Also sorry you have to be here, but welcome. Before the pandemic I worked in the office 5 days/week. Then we went full work from home. In June I went back at 2 days/week because I shared an office, and he also went two different days. Once I got my diagnosis and had a surgery date, I just went back 100% work from home.
I only take leave when I can't function well enough, or can't sit in the chair comfortably. I work for the Army as a DoD Federal civilian and am a leader in my office, and work with other groups in our command. We are short staffed and are often one deep with responsibilities, so me being out can cause delays on our projects.
I have alerted my supervisory chain that there will be times when I have to take sudden leave, that chemo fog/brain is a real thing, and I just requested that if they feel I'm lagging on something to please remind me. It won't hurt my feelings. Luckily we have lots of electronic ways to create reminders for ourselves, so I have not had issues with that so far.
I quit drinking coffee at first chemo and have stayed away from it, so I'm a little draggy without my 1 cup of caffeine. But I want to stay away for now. We are encouraged to take frequent breaks and walk outside, or just let our eyes focus on something else for a moment. I live on a farm so my husband is usually here with his crew, so I can wander outside for a walk anytime.
I've already taken a lot of leave with all the doc appts and procedures I've had, and luckily I started with plenty of leave. But I still have radiation to undergo, and that will be time each day for 4 weeks. I do not make up time in general, and do not work nights and weekends. I just had my 2nd round, but after my first there was only one work day where I was so tired and unproductive, and then it was the weekend.
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hi mamacure, I am sorry you are here with us. Chemo SEs are very different for everyone. My MO recommendation was to "wait and see how it affects you and decide based on that if you want to work. But don't expect the same performance as your mind would be affected". For me, during first round of AC chemo, I didn't work the first week, but the next two weeks I felt pretty normal and was working (except for the night I spent in the hospital because of fever). Next round is tomorrow and I am planning the same for now.
For me personally working helps me busy so my mind doesn't wonder into "what ifs" scenarios but it is again very personal for everyone and as my MO said some people find it much easier if they are not working.
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I have my second AC chemo tomorrow morning. Last time I was very tired for about a week, I am wondering how it is going to be this time. Also I noticed my resting heart rate fell to under 60 on day 3 and day 4 after chemo. My MO's response to my concern was "keep moving and drink water". Considering I already was drinking like 2 to 3 litre, I don't think I can do more. But I am planning to walk more and meet my step count which I have set to 7000 after starting treatment. But it might all be wishful thinking on my side Are you able to do any kind of exercise?
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Just one
last check in as I move toward the end of my two weeks. Next infusion is
Monday. After the diverticulitis scare the antibiotics seem to be helping a
lot. I need to take them for several more days. Just a few side effects to
report, problem is I’m sure which side effect goes with which issue. Very weak three
days ago. I had great empathy for the lady in the tv commercial who fell down
and couldn’t get up. I don’t think I could have on that day. I am stronger each
day and can actually walk on access road the distance of a couple of houses in
each direction. I had my first, and only, I hope night sweat. I have three
small pimples on my wrinkly 75 year old face, and I think my nails are starting
to look peculiar. I am on a clear liquid diet and plan to stay on it well into
next week, because I do think that the original constipation might have been caused
by the Zofran, so rather than taking it and the compazine alternately, I’m
going to the “as needed” plan. All of
this is just guess work, so I guess I’ll know more next week.One last
note of interest. When I was getting the IV at my oncologist’s office on
Tuesday in one of two chair rooms, a nurse led a well bundled up elderly lady
to the other chair. I couldn’t see her but when the nurse asked the usual id
questions, name and date of birth, the lady in the other chair said “1933”.0 -
Thank you GreenOutdoors, Kipepeo& Aram for the helpful advice! I will try working at first and see how it goes. My top priority is to care for my family. I'll plan on taking a few days off during the first few days of the infusion. Did any on you get the COVID vaccine? I'm thinking I should get one today since I should be starting next week or so, but not sure if I can find an appointment. My Surgeon didn't seem overly concerned, but if our immunity is so low.........
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So my chemo starts tomorrow.... I am scared but I need to do this so......
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heliosue, great to hear the antibiotics are working for you. Good luck with your second treatment.
mamacure, unfortunately here they are not offering the vaccibe to my age group yet. I talked to my MO and she said to get it as soon as it opens up regardless of where I am in the cycle. So waiting for that.
emotionalpond, I was kind of stressed before the first round as well but it really wasn't that bad. I did need to get hospitalized because of fever but even considering that my first round was much better than what I was expecting. Our chemo is different but from reading others experiences it seem TC is doable. Not pleasant but doable. I hope it goes smoothly for you.
I had my second round today and it took the nurses 6 tries to get a vein. I really felt bad for them, and I said I am sorry so many times that the nurse told me you are not allowed to use that word for the rest of the day. It is not your fault your veins are really small!
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Aram, I’m sorry you don’t have your port yet, hopefully that is the last time without it! Yourwater intake seems perfectly fine to me! I can’t say that I exercise exactly, I walk my dogs, or use the stationary bike. 10-40 minutes depending on the day. The bike works well when I’m not feeling great. It seems that during chemo week, for me at least, midday naps are also important. 7,000 steps is a great goal, if you are feeling up to it.
Mamacure, I’m fully vaccinated as of last weekend!
EmotionalPond, good luck tomorrow. I’m also on TC, the nurses were very attentive during the first treatment. Just don’t hesitate to call your MO afterwards if you have concerns about side effects.
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good morning all-
I’ve had a bit of a rough week this second round, but am starting to feel better. Nauseated, constipated- y’all know how it goes.
Wondering do any of you have head/scalp sores? I’ve got 20+ pimple-like bumps all over my head. Kinda painful, like a new pimple coming in. Can’t say I’m a fan of this development. Curious if there’s anything I can do to alleviate the discomfort.
I’m going to try to get out for a walk today.
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Chrystal, I'm so sorry you're having a rough go this time. It is a balancing game of symptoms.
I had the scalp pimples after my first round when I still had hair. Had a break out on my face too but it wasn't too bad. I'm only in my 4th day after round #2, and so far no pimples. I didn't do anything for them. Just try not to pick and leave them alone. I also use a conditioner bar of oils on my head to hopefully keep it hydrated.
I've also not needed any meds for nausea, constipation, diarrhea, or bone pain....yet! My dose was reduced 15% because of the diverticulitis though. Doc said he wants to go back to 100% if I tolerate this one well. I'd rather leave it reduced if there's clinical benefit.
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Greetings - I made it through my first dose of CT on Wednesday (3/31/21) and so far so good. I am off the steroids today, and starting to feel a bit of fluid build up near my chest. I am curious what you are eating? Nothing tastes good to me - not even ketchup. It seems to me that the more bland the food, the better I can tolerate it. Thankfully, I am able to drink water so I have been consuming it all day.I have heard days # 4 & # 5 are the worst which will be this coming weekend. Hope it is not so. Any advice or tips would be appreciated.
Emotional Pond - I hope today's treatment went well for you, and it wasn't as bad as you thought it was. You and I are almost on the same treatment cycle.
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carpe- I eat just plain grits or white rice on the really bad days. And I also have a smoothie, with protein powder and a banana or something. I do feel better after I get something in my stomach, but you’re right. Hard to find anything that tastes good.
keep up with the water. And sleep. A lot.My doctor prescribed an antibiotic for my head sores, which SUPER suck! The sores, not the antibiotics. Anyways, just started them today, so hopefully they work.
Other than the head, today was pretty good! Had yummy Mexican food for dinner.
enjoy the weekend all
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