I might have to have chemo. I’ve been in denial over this ever since I was told I just had a small tumor, but my pathology report came back that my cancer is more advanced than initially thought. Stage II. Turns out my breast had lots of little tumors (fifteen!), with at least one being not so little. No big tumors in my lymph nodes, but a microscopic one was found in my sentinel biopsy. I’m waiting for the oncogene test results and getting myself prepared for the worst. A part of that preparation is finding out what chemo is like.
What was it like for you? How long were your treatments? How sick did you get? I’ve been told to expect four treatments spaced out by three weeks, so I’m trying to figure out how much sick leave I should reserve. Like, I know I’ll want to have at least four sick days (one for each treatment day), and probably tack on another for the day after (a total of eight days). Is this overly optimistic? I’ve got enough leave to do more than this, but I still want to get a good estimate in my head.
What kinds of activities should I plan on not being able to do? Is yardwork out of the question? That’s the most physical thing I do, besides recreation walking.
Any suggestions on how to make the process less…bad?
I now understand why cancer survivors are often described as brave. It requires bravery to do all the things the doctor recommends you do. For some reason getting the mastectomy was a no-brainer for me, despite all the risks associated with major surgery, but subjecting myself to chemo is terrifying. I think it’s because I know lots of people who’ve been through surgery. I don’t know hardly anyone who has been through chemo.
I haven’t gone through it myself but I watched my son go through it. It’s really hard to tell you what to expect. Every type of chemo is different, chemo schedules are different and every person reacts differently to it.
My son had one type of chemo that they gave him 5 days straight - he stayed in the hospital for 5 days, came home for a week and went back for 5 days of chemo. He did this for a few months. During his week off he was sick, weak and in bed for the first few days. Then he felt good enough to be with his kids and maybe go to a store or park.
Then he had a type of chemo where he would go to an infusion center once a week. Some days he would be sick and some days he felt fairly normal.
He had other types of chemo too - he even had one that I think was a pill that he was able to take at home.
All of them made him tired and weak. He didn’t have much of an appetite even when he wasn’t sick to his stomach. He told me that food didn’t taste good. There were just certain things that he liked to eat. At one point, of all things, he was on a crab leg kick! They weren’t cheap, but I didn’t care. If he wanted to eat, I’d do anything for him. He also drank a lot of Ensure and Muscle Milk. One chemo gave him mouth sores, one chemo made his arms itchy. I never knew what to expect.
One thing he always did was, he tried his hardest to go places and have experiences with the kids. We all went on a few day trips to zoos and other similar places. He and his fiance took the kids for a long weekend to Wisconsin Dells. He didn’t want to miss out on anything.
I think gardening and walking are very do-able.
I wish you all the best in your journey. It won’t be easy, but it is necessary. And you are correct, cancer survivors are some of the bravest people there are. They are warriors.
I’m very sorry to hear you have to go through this.
My brother had some chemo after they found a tumor on his throat. It went very well; I think he would take an afternoon off here and there. But of course every cancer and every person’s reaction may be different. Did you try looking for support groups? The one in Facebook is 13K members strong…that multiplies your chances of finding someone who is/was in the same situation and can give more applicable answers.
Even just for breast cancer (“BC”) there’s a bewildering array of treatment regimes out there. Some options depend on your tumor genetics which you / your docs should be learning about now.
One thing is for sure. Compared to 20 years ago the side effects can be greatly less. Whether that’s through more targeted meds or through better anti-side-effect meds.
This is serious stuff and it’s 100% appropriate to be apprehensive. But if you’re imagining lying in bed wishing you were dead while puking every few minutes, that’s simply not gonna happen. If it starts to you’ll be getting better anti-nausea meds or moved to a different treatment.
The one person I’ve talked to in real life about this described her worst days on chemo as exactly this. She is also battling breast cancer.
The one thing that she says that’s making me less afraid is that the quality of her days on chemo were quite variable. She had days where she couldn’t get out of bed, but she had many days where she was up and moving around. As long as there are more “up and moving around” days than “kill me now” days, I won’t be absolutely terrified. Just a little terrified.
I had three rounds of chemo via infusion, each round consisting of three consecutive days of infusion and then a Neulasta injection on the fourth day. I had three weeks off between each round. Because I was on short term disability after diagnosis and prior to the start of treatment there was no temptation to try going back to work, but after that first month I was pretty useless anyway. It was about three months after chemo ended before I had enough strength to do eig
ht weeks if radiation, which knocked me back for a couple more months.
My number one piece of advice is to use the “optional” meds the docs give you. The first treatment week I avoided the antinausea drugs and paid for it. And while benzos have lots if problems, Ativan kept me functional through the worst of the anxiety. Waking up in an existential panic is bad, so an Ativan before bed was invaluable.
@JohnM, that was helpful. I am thinking I might need to just play this thing by ear when it comes to planning for sick leave. My original plan (when I was still in denial and not thinking chemo was in my future) was to go on short term disability, and then I backed off from that when I realized I wouldn’t be able to work at all (not even check emails). So now I don’t know.
It’s a VAST community on every possible aspect of breast cancer–from waiting for test results to years-later followup. The threads can get insanely long, so just search for key terms or start your own thread. There is also a place to get articles on everything related to breast cancer.
As others have said, this is one of those situations where every case really is different from every other. Maybe radically different, maybe slightly, but you won’t likely find anyone with exactly the same diagnosis in every particular as yours. However, this board is a resource where you will find lots of first-person accounts of (99%) women’s experiences. I found it helpful as I was going through different phases of my own diagnosis and treatment. You WILL need to get familiar with acronyms that refer to your diagnosis, etc.
I was surprised and somewhat annoyed that I wasn’t allowed to even check emails or discuss work issues with coworkers while on STD. Once I was into treatment, the enforced separation let me concentrate on getting better and not dealing with work stress on top of it.
Sorry to hear this Monstro. I haven’t got any direct experiences of chemo but I wish you all the best and I hope you get through it without too much stress.
I do however have to get regular hospital treatment for a rare form of blood cancer in exactly the sort of day units you will use. The thing I most like about it is the friendliness of the nursing staff. You may get to know some of them and the chats we have are always a pleasure - even though they are sticking a giant needle into my arm!
One other thing I forgot to mention, I’m really glad I got the subclavian infusion port installed. I have really crappy veins, and not having to worry about getting a good IV stick or having nasty chemo drugs infiltrating from the vein was another good thing not to worry about.
Based on my wife’s experience with breast cancer… just write the next year off. You’ll be able to do stuff, but you won’t be able to plan to do stuff. Sorry.
Monstro, all I’m going to say is hugs to you. The type of chemo you may get will totally depend on the subtype of cancer you have, and everyone’s experiences are going to differ.
I had a brain tumor removed at the age of 14. No radiation or chemo necessary. I think a child can be more resilient and optimistic due to being naive than an adult.
In 2013, I was diagnosed with diffuse Large B call Lymphoma, and they put me on a regimen of chemo called R-CHOP…at the time I thought the brain tumor was much easier to handle!
The first round they gave me seemed tame (I was prescribed 6 treatments every 3 weeks, and then a drug called Rituxan once every 3 months). The bad news was after the first round, they discharged me home but gave me a prescription for nausea that couldn’t be filled until 9am the next day. Suffice it to say I was unaware one could have nausea and emesis so badly! I was 38 and in tears. But the good news was Zofran became my best friend! However, I found orange juice tasted horrible for years afterwards and my inner body temperature has continued to stay so hot that I have my apartment AC at 60° at all times.
By the time the heavy 3 week regimen was over, I returned to work as a travel nurse and flew from Seattle to Texas every 3 months for that one drug infusion. And it was a breeze, and in 2015 was in remission.
Frankly, I did not think chemo was so bad. But I think my experience was different because it was my 2nd cancer, and others had to endure much more pain and personal upheavals in their lives than me.
From what little I can read into your query, I think you have a good attitude and are much more mature in the way you are approaching your treatment than I was.
I admire you very much.
Please excuse and /or forgive me if I said anything out of turn or inappropriate in my personal experience. I put my foot in my mouth at times and am blithely unaware if I cause offense sometimes.
I wish you all the best and am hoping remission comes swiftly!
For Hodgkin’s - I had chemo on two consecutive Fridays (after work); then two Fridays off, for several months - then less and less until nothing after about 18 months. I learned that if I went to bed and got to sleep within four hours and had a decent night’s sleep - probably 80-90% of the nausea feelings would have passed. Weekends I tried to live a normal life - but eating very lightly (soups, salads). I still couldn’t eat a normal meal until Monday’s lunch - but I never missed a day of work.
I didn’t realize there were so many bad-asses on the Dope! Thanks for all the helpful info, everyone. And thanks for the kind words and all the encouragement.
More later, but I want to say that I had a stage 2 tumor with a positive lymph node and had few side effects, and one of my breastcancer.org buddies had a different chemo mix and had a hard time. However, her exercise plan for the week includes running 40 miles, so you can infer that it was finite.
