That is actually a very tough question to answer because reactions can vary greatly depending on so many things including which drugs, how much, how often, your general health, your age, etc. I have had 4 or 6 rounds of chemo so far. I typically have side effect for about 5-6 days each cycle with 2-3 of those days being particularly annoying.
Invasive Lobular Carcinoma Questions
I would appreciate knowing people's reactions to chemo. I will begin chemo with A and Cytoxan in 2 weeks.
Asked by papayagirl on Saturday, February 18, 2012
I would appreciate knowing people's reactions to chemo. I will begin chemo with A and Cytoxan in 2 weeks.
10 Answers from the Community
Everyone's reaction to the drugs is different. The dosage could be different, the length of time between treatment varies, and emotions vary as well. That said, I can share my personal experience.
I began treatment with chemo, a dose dense regiment (120cc of Adriomyacin and 1000cc of cytoxin and a Neulasta shot 48 hours after treatment ). My hair fell out in 5 days. Luckily, I had been advised to cut it short, a buzz cut, the day of my first treatment. I lost all of my hair (eyelashes, eyebrows, the hair on my arms, etc. that's right, you won't have to shave your legs for a long time.
I didn't struggle with nausea as much as some of my friends. But, I tried very hard to eat nutritional foods in small quantities. I drank cranberry juice, and, when I didn't feel like eating anything, I listened to Barry, my husband and caregiver, and ate as much as I could.
You will need help. I advise that you make a list now of what is a priority for you and a list of your needs. You will be able to do some things. However, if you decide to work, you may not be able to mop the kitchen floor, fix dinner, do dishes, help kids with homework. I worked 1/2 time(only on good days, only as much as I felt I could work). That was all I could do. You will find your own limits. However, bear in mind, when you cross those limits, your body has fewer recovery resources. When people ask, "what can I do?" have a list of things you need. Let people be there for you.
And, those of us who have been there before will be here for you also. and not just "here." We are available on email, twitter, at local support groups, and in the chair right beside you during treatment.
I agree with what has been answered already. Everyone is different. I think the majority of people are terrified of that first chemo. I had A/C Taxol so mine was probably a little more than yours and then my last 4 were Taxol. I think your chemo will be what they refer to as "red devil". I was very nauseous. I walked around with mini saltines and drank a lot of water but found that the water made me nauseated. I never got sick actually thank goodness. Try to eat even when you don't feel like it, on my first check up they told me not eating wasn't good it was making me feel worse and they were right. I found that potatoes helped my stomach. I lost my taste buds not everyone does, but you don't feel like eating much. I didn't work much either. Chemo will take a toll on you but know there is a light at the end of the tunnel and it will be over. I just kept counting the weeks down. It will be easier than you think.
My experience with AC was... NOT FUN!
In general, I needed 10+ hours a sleep a night.
I stayed on schedule for the anti-nausea drugs.
I drank a bunch of water.
I lost weight.
Cycle one: not terrible, but nausea was pretty intense. Definitely more fatigue than with my taxol stage.... For about two days, my skin hurt - that was weird...
Cycle two: The doc had asked me about my experience, and I told her that nausea was a big deal. She said - we'll make it better. They gave me additional anti-nausea drugs... It was better. Fatigue for cycle two was somewhat greater. Again for about two days, my skin hurt.
Cycle three: very similar to cycle two with more fatigue and more nausea than with cycle two. Still everything was mostly manageable. I was still getting things done at work... etc...
Cycle four: EVIL! We have a hypothesis that I got a stomach bug AND chemo at about the same time... but we'll never know. All I know is that the night of the last cycle of AC, I was puking my guts out for about 5 hours. We have a heated bathroom floor, so I just dragged myself, a blanket, and a pillow into the bathroom and just stayed in there. Fortunately, I didn't wake anyone else in the house, which meant my better half got a decent night's sleep (I was truly happy about that). I managed a wee tiny day at work the day after - only because I HAD to be there. Maybe managed 5 hours upright per day from Friday until about Wednesday... I managed half-days at work M, T, and W... Then, I started getting on the up and up. My hemoglobin tanked that cycle - probably dipping down to the 7 point something... Ugh - it was awful. I'll never know if I had a double whammy or not....
So, everyone is definitely different... But that is the short version of my experience. It gets a little bit worse with each cycle... And that seems to be true for nearly everyone. BE ON SCHEDULE with your anti-nausea meds. The nurses can help you figure out a good schedule. Ask which drugs can be taken in combo. I was surprised how many different things I could take at once!
My tastebuds went to total XXX - everything tasted quite nasty... I still am not back to normal, but things taste much much better now - I'm one month out from the last treatment. I still do not like garlic, which is CRAZY!!!! Because I LOVE salty, oily, garlicky things!!!!! Everyone's different, but I ended up dropping weight - not a ton - I worked hard to attempt to maintain... It was hard, though.
My advice - do whatever you can to MOVE a little every day. Even if for just a few minutes... Do a little more as you feel better. It makes a huge difference - especially with the nausea. It was kind of amazing, actually... If I felt nausea... then got up and just walked around my building or whatever for even just 3-4 minutes... the nausea would totally back off.
Since you haven't started AC yet - see if you can get your activity level up before you start (if you aren't active already) or MAINTAIN what you currently do. Then, while on AC, keep that schedule, even if you have to shorten bits of activity because of feeling crappy.....
I hope you are lucky and find it all manageable and that this time passes quickly for you... It's not fun, but the alternative is really quite a lot less fun....
Good luck - hugs.
Thank you all for your responses to my question. I found them quite helpful. Although everyone is different, I did find some common threads. The anti-nausea meds, moving and that I may be fatigued all seem very important. Countrygirl, is Neulasta an anti-nausea drug? I really appreciate your thorough and thoughtful responses. Thank you for the well wishes, too.
I would never say that chemo is easy, but it is not as bad as you might think. The important thing is to have, AND be able to accept the support of others, especially the oncology staff. Including the anti- nausea drugs, the kindness and nurturing available is overwhelming, at least I found it so.
Neulasta is not an anti- nausea drug. It is given to prevent the significant bone pain, and possible damage the chemo can cause. Take it.
Neulasta, as well as Neupogen, are give to raise your white blood cell count. Chemo does quite a number on your White Blood Cells. They are produced in your bone and thus, can cause achey bones. I received a Neulasta shot the following day after getting chemo, if needed, based on my WBC (I needed it every time).
Again, everyone is different.
Here's me: I am 45 (44 during chemo), 5'11" and 185 lbs. I was newly diagnosed as stage IV. I did neoadjuvant (pre-surgery) chemo to help shrink up everything before surgery.
Other than the whole cancer thing, I am basically healthy...no other gripes.
I got 5x of Dose Dense Adriamycin and Cytoxan, followed by 8x of Taxol and Carboplatin. During the AC Chemo, I never got sick. I would get my blood work done on Tues, Chemo on Thurs and Neulasta on Friday, every other week (one week off between each infusion). They give you a week off to help build back up your blood counts, especially the white blood cells (WBC).
I drank PLENTY of water, at least 64 oz. A day...sometimes more. What helped was drinking Hint Water. It has a barely noticeable flavor, but just enough to make it not so boring.
I also took Glutamine, a supplement, 3x a day, 10g per dose (30g total). Glutamine helps your muscle recovery. It was recommended to help prevent peripheral neuropathy (which, in my case, I never got). I also took Vitamin B6 and a multivitamin (Centrum Adult Chewable). ALWAYS ask your Oncologist first before taking anything. My doctor said, "go ahead, it can't hurt."
My ONC also gave me Compazine and Zofran (prescriptions) to alleviate any nausea. Like I said, I never got sick. However, on my second infusion, I thought I felt a bit queasy, so I took the Compazine for two days following the chemo infusion. Didn't puke...yeah! The thing with anti-nausea meds is that you must take them BEFORE you get sick. They don't work as well if you are already throwing up.
Personally, I think three things made the difference for me: my cast iron stomach, lots of water and the Glutamine.
The Neulasta injection affected me more than the chemo. I would get super achey for two days (Sat. And Sun.) after the shot.
I lost all of my hair at day 21. No hair anywhere. I never wore wigs or scarves, preferring to go au natural. I got some looks, mostly from kids, but that's it. I didn't want to be uncomfortable (wigs are itchy!) just to make strangers feel comfortable.
During the Taxol/Carboplatin infustions, I read that your nails can get adversely affected and even fall out. To help stop that, I kept my toes and my hands in ice during the entire infusion. I kept frozen gel packs around my toes, held in place with a hair band and kept my hands on bags of frozen peas (they conform better). My nails were never affected at all...they actually look better now than they did pre-chemo!
The Taxol/Carbo did a number on my Red Blood Cells (RBC), Hemocrit (HCT) and Hemoglobin (HGB) and I had to get two blood transfusions (2 pints each time). That freaked me out! But, it also made me feel less fatigued. I actually walked 6miles a day, 4-5 times a week during this time. The Blood Transfusions gave me a ton of energy. My hair also started to grow back in during that time...a soft white peach fuzz mutant hair that eventually became "real" hair.
I wish you tons of luck and health. Fir me, it wasn't at all what I expected and I am thankful for that.
Thank you Sofarsogood and Geekster for the good information and descriptions of your experiences. It helps to know other people's experience even though I know mine will be unique to me. You both gave me hope about maybe it won't be as bad as I anticipate. I'm trying to stay focused on the next procedure...for me it is putting in the port...rather than look too far ahead. It helps keep my anxiety down. Last night was not so good. I woke up every hour on the hour and had trouble shutting off my mind. This is the first time my sleep has been affected so I'm hoping it is an exception.
After reading the posts of many I have a much better idea of the possible reactions. Thank you again.
What great informative answers you have received. I found fatigue to be a major factor which required a lot of rest. I could tell by my shallow breathing that I needed to stop and rest. I hope you will be able to do that when you need it and be active when you are feeling stronger. I would also add some advice about your diet. Stick with their advised foods. I survived on cream of wheat or oatmeal, boost, chicken noodle soup, mashed potatoes, applesauce, V-8 veg-juice drinks, cooked or canned fruits or vegetables and some chicken. Most foods were not appealing but when I broke the code (2 times), I got an immediate pay back which required a lot of Preparation H. Best wishes and let your doctors/nurses know what is happening because they can help by adjusting your meds.
Thank you, Rosefeeney, for your advice re diet and meds and especially for telling me the specific foods that went down. Did your Dr tell you about a diet. Mine has not said anything except that food probably won't taste good. I'll ask her about this. I have heard from others about the fatigue. Thanks for your input.