How bad is chemo......really? Can't find the answer

Jbakerwebb

I am two weeks away from my first chemotherapy treatment still healing from second surgery. Stage two invasive ductal carcinoma with lymph node involvement . Trying to get a realistic picture of what chemo is really going to do to my body . I'm 57 years young and my biggest fear is hair loss and aging 20 years in one year ! Can someone please give me insight . So far the worst is the stupid port that was not optional for me to receive the chemotherapy treatment . I have a nickname for her but I can't post it on public forum LOL .

mustlovepoodles

Chemo isn't fun, but I didn't find it to be terrible. It's not like portrayed in the movies--puking, gray, look like death on a cracker. I'm 59 and my SEs mostly consisted of fatigue, changes in taste, diarrhea, and fatigue. Did I mention fatigue? I lost most of my hair, too. I never threw up once (they give you meds for that.) I did NOT age 20 years, however. In fact, I looked pretty good. No one even knew I was going through chemo, unless I told them. I got a hot, blonde wig and I was ROCKIN' it, too. I did run fever 3 times and had to go to the ER. They only kept me once, because my blood counts were way off. But for the most part I was able to work part-time and I think I may have taken 5 days off for the duration of the chemo (4 doses, 3 weeks apart.)

Getting the chemo was a snap, especially with the port! They just pop the needle into place (hurts very briefly, like a mosquito bite.) They run some fluids, a steroid, and anti-nausea meds in, then each of the chemo drugs. I took my work laptop and sat there for 4 hours, working away. The steroid made it hard to sleep for a couple of days, so I took something for that. Usually the fatigue set in around day 3, which was Friday, so I usually took off on Friday. By Monday, I was better, but still fatigued. I do a sit down job and I can work from home, which was very helpful.

Good luck with the chemo. I know you're worried about your hair. Everyone is. But hair will grow back. Hopefully, your cancer will not.

ksusan

Welcome! I suggest you check out the many threads in the chemotherapy forum: https://community.breastcancer.org/forum/69

Do you know yet which treatment you'll have? And how many rounds? Adriamycin is a tougher road.

I had taxotere/cytoxan (TC), 4 rounds. It had its challenges (fatigue, hair loss, cruddy toenails) but I found it manageable. The port installation and ongoing port discomfort were worse for me than the chemo was. Remember that most people are going to post if there's a problem. Many don't post when things are going well. Threads with titles like "Chemo May 2016" are going to get you a bigger cross-section (and a lot of support).

Italychick

My motto was "plan for the worst, hope for the best." I didn't have many side effects until round five then had burning gut and tingling fingers and toes, which have all gone away. I exercised, worked, kept grandkids all through chemo. I got Neulasta so my white blood count (neutrophils, also known as baby whites) never dropped.

Things handy to have on hand are anti nausea meds, Imodium, a stool softener, something like Pepcid ac, and get an antibiotic prescription filled. I got stung by a bee and the oncologist said take an antibiotic prophylactically, and I was glad to have it on hand because it saved me an emergency room trip. Eat small amounts of food all day to try to prevent nausea, I never had any. My thought process was if the stomach wasn't empty, less chance of nausea. I drank smart water (brand) because it had electrolytes in it. Watch potassium and magnesium levels because my potassium tanked during chemo and I had to take horse pills. Your doctor will monitor all these levels. Drink whatever is appealing, as long as you drink. Your mouth will at points probably taste like crap so you may have to experiment with what you can drink

Anecdotally, magnesium kept me regular and I didn't have to take stool softener. You want to make sure you poop regularly so take whatever you need to avoid constipation.

Coconut oil helped everywhere, hands, feet, butt, head. You want to make sure you don't get a bleeding butthole, so staying ahead of constipation and keeping the area lubricated will help.

It isn't fun, but it is doable. It has been a year, and I don't even feel like I had chemo, other than waiting for my hair to grow out.

Best of luck!

Anonymous

Jbaker,

I start chemo on Friday. I am like you and very nervous about this. I am getting FEC. Does anybody know what determines what treatment or mixture of chemos you are given?

I have read a fair bit on this chemo thing and am just going to try my best to make sure I eat enough protein for my body weight, to help body reproduce white blood cells. Other than that I aim to stay in as much as possible, take it easy and not catch bugs or infections. This worries me more than anything.

I am getting the cold cap so I am hoping to not have too much hair come out. But if it does then I will just shave it all off and wear scarves.

I think you need to not panic too much and just take each treatment as it comes. Don't worry about what we have no control over. Get yourself ready for the treatment eat well and tick each one off on your calendar as you do it. Each treatment is one step closer to normality.

Dolly

PS Keep in touch and let me know how you do. What chemo are you getting?

ruthbru

As everyone else has said, chemo isn't fun but, if you drink tons of fluid, take your anti-nausea medication EXACTLY as directed, and get a little exercise (yes, that seems weird but it is true, it will help), then you should do okay. Everyone reacts differently, which is the scary thing because nobody can say for sure how you will do. I, myself, kind of felt like I had a slight case of the flu (but never threw up or anything). I worked full time (teaching) and only missed on infusion days (I did it on Friday so I could feel kind of creepy over the weekend and better by Monday), did everything I had to do, and most of the things I wanted to do too. I would take all the help I could get though; if people offer to make you meals, run your errands, whatever......take them up on it! Also, I hired a cleaning lady and let a lot of stuff slide. I looked fine because I got a good wig and always wore makeup and dressed nice when I was out and about. I would say that it took about a year to feel 'normal' again, but didn't have any permanent side effects and am doing great nine years out! About the port......I HATED mine with a passion, but I am very glad I had it to protect my veins. From now on, you won't want to get any blood draws, IVs, blood pressure readings etc. in your 'bad' arm (due to the increased risk of lymphodema), so you really do want to have that arm protected, not blow out your veins with chemo. Hang in there, this too shall pass!

CJSharma

It's really dependent on you, unfortunately. Please feel free to read the Starting Chemo in April 2016 thread. We are all taking different chemos, and we have good days and bad ones. But for the most part, we're powering through because we're doing what we have to do to kick this disease into last year. We're open about our side effects, and how we are reacting.

As pointed out - listen to your doctor, take the meds prescribed as prescribed. Drink plenty of fluids (I honestly think this one is so important). Rest as needed, walk as often as you can. Allow people to help you - you'll find out how many wonderful people are in your life. Yeah, you may have some disappointments, but that's life.

keepthefaith

jbaker, you'll get used to the port, but it will probably never be your best friend! Like others have said, drink plenty of fluids. if you have a Neulasta shot after chemo, take 24 hr Claritin a couple of days before and after to help relieve the pain. If you need a ride to chemo or someone to clean for you, call the American Cancer Society. They have Road to Recovery volunteers and Cleaning for a Reason. They also have free wigs to cancer patients, if you need one. There are a few websites that offer free scarves and caps also, but I cannot remember them off-hand. I was 58 when dx'd and my SE's were pretty mild. I hope yours are too!

keepitmoving

I found it to be manageable, not fun by any means but not as bad as I expected. I had 4 rounds AC then 12 rounds of Taxol. I worked through most of it - not full time but most days. When I figured out the routine - I was infused on Thursday, felt fine until Sat am then not great for two days, I was better able to do what I needed to feel better. I was not a big fan of Compazine, Zofran and the many other drugs that they offer for nausea because I felt so drug-filled already that I just didn't want any more. I did use medical cannabis and exercised regularly. Both helped immensely. There is a huge amount of evidence supporting exercise to reduce side effects as well as lower recurrence so I would strongly suggest it. I did lose my hair, my nails got a little funky and I got mouth sores but it was okay. I got a cool electric blue wig and magic mouthwash helped. You can do this....

Sjacobs146

it's probably not as bad as you think. I was afraid of becoming one of "the gray people" as I call them (no disrespect intended). I looked great on chemo. Steroids gave me rosy cheeks, and I rocked a great wig. A lot of people never knew what I was going through. My social worker explained to me that the folks who look gray have been on chemo for a long time, like years, and it does take a toll, but 3 months of chemo would not affect me like that. I also experienced zero nausea, due to the great drugs they have for that. Not to say that I didn't have terrible side effects from chemo, and it wasn't a picnic, but definitely not as bad as I expected

GraceB1

One of my Drs told me that the side effects from chemo were like a bell shaped curve. Some people had very few effects, a bunch had moderate trouble and some like me had a lot. I had constant nausea and ended up in the hospital twice, once for 8 days with vomiting and diarrhea. But don't borrow trouble. Everyones journey is unique to them. Just because I had a bad time doesn't mean that you will but don't feel like you're a freak if it happens to you. Even bad side effects are doable for a couple of months and I plan on being here for a long time.

tangandchris

My skin never looked better on chemo Seriously! But for some the opposite is true.

I struggled with chemo, but again for some it isn't as hard. I had other issues going on though that I believe contributed to my problems. I had an infection from surgery that just wouldn't improve, so chemo made that worse.

I agree that getting rest and drinking are very important. Walking helped me too, even if it was to remember that life was going on around me and this too shall pass. Take your meds as directed....do not wait until you are already feeling sick to start. Also, communicate with your MO and the nurse. I had to have my cocktail adjusted to a higher level of anti-naseau medication and they added ativan as well. The infusion nurses are wonderful too, at least at my center they were like angels. I honestly don't know how they do their job!

Take care and you can do this!

Anonymous

It's not bad. It's not a choice we would make if given the choice, but I embraced it once I knew I'd be going on the chemo journey for 5 or so months. I thought of it as my arsenal, along with lumpectomy, port (I loved my port and can't imagine someone trying to IV me every other week, then every week, for 5 months!!! I even used it in a recycled art piece once I had it removed. My lifeboat of sorts), blood draws, meds, etc and the subsequent radiation that followed 5 days a week for 6 weeks, post chemo.

I began to see every side effect as evidence that the chemo was working hard to kick little c's *ass, so to speak

Too much information to write about here, but if you use the "search" function and search my screen name on these boards and go back to the years of 2012-2014 (i think I was helping a lot of ladies facing chemo like you and offering tips, etc. during that time) you'll get lots of useful support. I did a lot of research and used the tips others had offered when I was in your shoes, and applied them. They worked. So check out what I did.

Ruthbru's advice above is a good place to begin--oncologists are now telling patients to exercise (not a marathon, just walking or something else similar) because it RELIEVES side effects and makes you feel better.

I did not use scarves for my bald head personally that screams "chemo patient" to me (I hate drawing attention to myself, and didn't want the "poor cancer lady" looks from strangers and acquaintances alike). It was winter so I wore a wool sherpa cap in the house at times and wore a short wig to teach in. Believe it or not no one could tell it was a wig, and I bought it on the internet for less than $100! When my hair finally got to be about 1/2" long in April and I was sick of my "hat hair"--that's what I called my wig, I took off my wig and walked into my undergrad class, and my students thought I had shaved my head--they didn't know that I had a wig at all.

Anyway, you'll be fine, if you embrace this temporary experience as a way to actively fight the disease and save you.

Claire

ksusan

I actually found chemo interesting, a luxury I had because my SEs weren't too bad. I worse neither a wig nor a scarf, just big earrings and an attitude. My undergrads said I rocked the look.

Holeinone

From what I have been told by my Drs. A/C is considered the chemo combo that causes the most side effects. Adriamyicin is called the "red devil", due to its color & rough side effects. I had 4 dose dense infusions of that in 2013.

Recently dx with liver & bone mets. I have had 4 infusions of Taxatere. It is a cake walk compared to A/C.

We all react a little different with each infusion. Fatigue does become a issue towards the end of tx. Be kind to your self, if you get sick, it's one day at a time.

Plan something fun, a trip or whatever you enjoy for when your tx are over. You will deserve it & fun to plan.

ruthbru

I did really okay with AC. I would expect to do well, and then adjust as needed.

Here's a little something to go along with Claire's wig story. I had done chemo the school year before, so the 7th graders I worked with had only seen me in my wig so they just assumed it was my hair (it looked better than my 'real' hair ever does!). Finally, right before Christmas my hair was long enough to shed the wig and go commando (think really, really short and really, really curly hair......pin curls, if you remember the look from your grandmother's days). Anyway, that morning I gathered up my courage and walked into the classroom. A VERY fashion conscious 7th grade girl took one look at me and cried, "WHAT did you do to your hair???" I threw up my hands and sighed, "You do NOT even want to know!" We both laughed and that was the end of that.

Jbakerwebb

ladies thank you all so much for your input. I'm all set. June 15 I start the Ted devil and cyclophosphamide (I think). Didn't get hope w the plan and detailed info. Will do 4 treatments every 2 weeks. Then taxol for 14 weeks after that. Will get neulasta (sp) shot after 1st treatment. Just relieved at having a plan. 2 months since diagnosed, 2 surgeries and it seems like 6 months. Craziness!!! Still trying to figure how to manouever around in here. One thing for sure......this is s sisterhood!!

Lizzy1981

You and I are having the exact same chemo. For me it has not been as horrific as I pictured. I was sad about losing my hair, but I had it buzzed really short on Tuesday and it started falling out Saturday (two days after my second infusion). Now I'm fine with it falling out since I hate it short. I have felt some fatigue a couple days following infusion and some nausea. I was so scared to do it, but honestly it has not been that bad.

The port surgery was nothing for me. I seriously had zero pain and went to the gym that night. I guess some people have issues with it, but I think most people are fine. I bet you will be too. Hang in there.