During the end of March I noticed a lump in my left breast. I had it check out, they did the ultrasound and biopsy. I was found to have breast cancer. Everyone was surprised because I am only 36 years old and that is considered young for breast cancer. (Mandatory mammograms don’t start for the general population of women until 40.) In the month of April, I underwent two outpatient surgeries and all of the cancer was successfully removed. Just as importantly, the three lymph nodes that they removed were also free of cancer and the bone scan was negative too. So.. I am feeling pretty good about that; it didn’t have a chance to spread. And they didn’t have to disfigure my arm playing “Find The Lymph Node”. Eventually, because they couldn’t clear my left breast of transitional pre-cancer cells, I am going to have the left breast removed. Also, because I am an adoptee and I don’t know my own family history, I am going in to have a DNA test done for the BRCA1 and BRCA2 genes. I already decided to remove my right breast as well; I don’t want to spend the rest of my life waiting for my other breast to grow cancerous lumps. If I test positive in the gene tests I will probably lose my one last ovary too.
But before I have the double mastectomy and rebuilding done (implants!), I am being put through a round of chemotherapy. I don’t have to do radiation because I have already elected to lose my breasts. So during the end of May I went through a round of scans, including one to check my heart, and had a port put in my chest. Once every two weeks for eight weeks (four sessions), they will be flushing Doxorubicin (adriamycin/rubex), and cyclophoshamide (neosar) though my port into my body. After this cycle is done, a cycle of Paclitaxel (taxol) is next (12 weeks). So I am going to be a bit busy for the rest of the summer.
So my “One Question” for the rest of the the-w.com board is if anyone else (or their loved one) out there has gone through chemotherapy and has some stories to share with me. At this point in time, this has only been week one for me; so I haven’t had a chance yet to feel good and crappy. I was really quite nervous the first time but everything went okay. My port worked fine, I couldn’t even feel the needle poke. The hospital aggressively treats nausea, so I didn’t have a chance to feel nauseous. My appetite has gone down, but that is a blessing in disguise; I might finally get control of my binge eating problem that I have had for the past 12+ years. The tiredness/ run-down feeling is starting to kick in (already annoying) and if I get up too fast I am light headed. No hair loss yet; but I already know I am going to shave it off when I starts to get really bad. (If I look even half as awesome as Sereena Deeb I will be happy.) Wigs sound hot and itchy, so I don‘t want one. I am sure more comments/complaints will come up as the weeks go by. But I would like to stress that I realize how lucky I am. Things could have been MUCH worse. It didn’t spread!
So has anyone out there gone through chemotherapy too? Or your loved ones? Also, if you have a good cancer/radiation story that would be interesting to me too. I am curious to know what the experiences of others was like, and if anybody can give me any hints, tips, or you-should-watch-out-for-this stories. Thanks in advance!
He lost weight and hair and was put on a high-calorie diet. He was also given drugs to goose the appetite. The chemo made him tired, but he was able to get out and about. There was some concern about his immune system being compromised so his excursions were limited, but when the chemo wound down, he was back to a normal diet and sleep schedule.
It stinks, but it's temporary. Keep your sense of humor. If you hair starts to thin significantly, shave it. Summer's upon us; your hair will be cooler. That was dad's attitude.
"To be the man, you gotta beat demands." -- The Lovely Mrs. Tracker
We've got a guy at work going through chemo right now and his details sound just like Matt's dad's. Lost weight, lost hair, gets tired sometimes, limits his excursions but still gets out. He's kept his sense of humour and seems to be doing quite well.
You sound like you're doing well, and I'm glad for that. Be sure to keep us posted as it goes along. If you're bored and hanging out at home, let me know and I can always set up my Animal Crossing town for visiting. I haven't played in a few months so the animals are probably all grumpy and could use the company
My Mom is going through chemo...every three weeks, basically. She always thought she never would until she was actually faced with the situation. A couple of days after each chemo she goes through a day or two that are very difficult to deal with, but most of the rest of the time she's pretty much OK. She's kind of past the point where we expected things to get worse, so we're grateful that she is still doing as well as she is.
Chemotherapy and Surgery Update, Wednesday 8, 2012
I’m sitting in the basement of our home typing this out at the computer. Last week Thursday I underwent what I hope is my final surgery for awhile. After a year of chemotherapy, I got my breast expanders replaced and my breast implants put in. I went for a checkup with my plastic surgeon earlier today and everything seems to be fine. I think that he did a really good job, especially considering what he had to work with. So I hope that this process is almost over and done with. And with that, I decided to sit down and type out some rather random stray thoughts. In no particular order…
I tried watching Monday Night Raw under the influence of some leftover Oxycodone pain pills after my mastectomy. The pills still disagree with me and still make me constipated so I stopped taking them. Also, they do not make Raw more entertaining either. LOL
Because I am adopted and do not know my family history, I got a BRCA1 and BRCA2 gene testing. Certain groups of people who test positive for these genes will have a much higher chance of getting breast cancer and ovarian cancer. I tested negative, so I was happy. If I had tested positive, they would have tried to talk me into having surgery to remove my one last ovary.
I had a port put into my chest prior to starting chemotherapy. In our hospital, the radiology department does this procedure. The port was a blessing; I have small crappy veins as it is and it is hard for people to start IV’s and draw my blood. Also, if done correctly, getting poked in the port doesn’t hurt. So that took some of the anxiety away from chemotherapy right there. Also, I was told by the chemo nurses that the chemo chemicals will do nasty things to veins over time if you use IV’s for the doses. The two things that stand out from the day they put my port in was how happy the happy juice made me feel and how hungry I was and how aggravating the smell in the entire department was. The hospital kitchens vent into the department and Radiology reeked of deliciously fresh fried doughnuts the entire time.
I like my oncologist. She is very nice and intelligent. She was working with a nurse practitioner (also very nice and intelligent) and for the first and second cycles I would see either one or the other. I was always getting my blood checked too; mostly to check my white blood cell count. For the duration of chemotherapy, my white blood counts were okay. They dipped a little, but never to the point where people got worried and stopped chemotherapy.
I also had MUGA scans to check my heart every so often. (Once every six months, I think?) Pain in the ass. Injected with radioactive dye though my port and then laying still and stiff on the machine for fifteen minutes. Chemotherapy is hard on your heart apparently.
Different cancers require different chemotherapy chemicals. So what I got in my I.V. bags for breast cancer will have been different than what other people will get. I hope I remember all of the details and chemical names correctly:
The first set of chemicals, “AC”, Doxorubicin (adriamycin/rubex) and cyclophoshamide (neosar), was given once every two weeks for eight weeks, totaling four doses. The first, the doxorubicin I think, was a creepy bright color red and was pushed into the IV with a big syringe. When I peed it out, it made my pee bright red too. I looked it up on Wikipedia and the other chemical, cyclophoshamide, is probably what turned my nails a funny brown color. These chemicals were probably the harshest chemicals I got of the three sets. Between the pre-meds, the chemo, doctor/nurse checks, the waiting for papers, and pharmacy to fill orders, I would spend about six hours in the oncology department during the first set. Although the room was quite comfortable, with comfy chairs, televisions, and free food, I quickly learned to bring lots of books with me. (“On Food and Cooking” by Harold McGee was the main one.)
After you get pumped full of these toxic chemicals there is a period of two or three days where your body fluids are considered a health risk to other people. So after you use the bathroom you are reminded to flush twice and watch where your fluids go. Also, you are not supposed to have unprotected sex with your partner during this time either.
During the entire chemotherapy, I was incredibly blessed and am really grateful that I wasn’t cursed with a ton of side effects. I was given a consistent group of pre-meds in the IV before the chemo and was loaded up with anti-nausea medications so nausea was never an issue. I did lose my appetite during this period, but I have always had a binge eating problem so that didn’t really get me upset. I was warned that most women GAIN weight during breast cancer treatment because once they get off chemo they eat too much to compensate! Also, you are warned to not to try to deliberately lose weight during this period because you need all the calories you can to keep your strength up and your supposed to be concentrating on getting better anyway. I actually did lose about 25 pounds during the process but for me the struggle is to not regain it back because I weighed too much before this started to the point that I was pre-diabetic with high blood pressure. I also wasn’t cursed with mouth sores or a ton of digestive problems either. My mouth sometimes felt like it was full of gravel, but that eventually got better too.
During the first set of chemo I would drop by the next afternoon and they would give me a shot to help stimulate my white blood cell production. Apparently, this shot could make your bone marrow hurt, but I didn’t get that either. I was also really lucky to avoid getting sick (colds/flu) during this time. My nails turned brown and stayed brown for about a year, but that wasn’t too bad. I did get really tired for three days, starting four days after the chemo dose like clockwork. So I hung around the house for those days. We don’t have kids, just cats, and I don’t work outside the home, so there wasn’t a lot of stress about kids and livelihood during this time.
I did lose my hair. I cut it short when I started chemo and braced myself. It started to fall out in big clumps about four(?) weeks into treatment and after a while I thought it looked so bad that I had Husband take it all off with his buzz shaver. (Did you see the movie 50/50? Not Husband’s balls shaver LOL.) I stayed bald all the way through the second cycle and it finally started to grow back partway through my third chemo cycle. When you lose your hair though, you lose it ALL over your body too. So it was nice not having armpit and leg hair for a while. It was weird not having p*&^% hair for a while (LOL!). I could have gotten a free wig from a local charity but I turned it down. An aunt who had breast cancer too on facebook commented to me that yes, wigs were hot and itchy. My Mom tried to help and bought me a hat but I didn’t really wear that either. I can’t believe how much cooler and more comfortable it is to not have hair during the summer. So I spent the entire time, in public and on vacations too, bald. I only ever had one comment about it and it was more of curiosity and not hostility too. My hair is growing again but it is growing in curly. It was originally strait and I don’t like it curly. I just need to be patient and let it straiten out again.
My oncologist and nurse practitioner are amazed and baffled that I came through this with so few side effects. I had to ask if it was my relative youth. I was during the entire year the youngest person in the chemotherapy room. But in their experience, it is the younger patients that have more problems with side effects, not the older ones. So I’m baffled too.
During the first cycle we also adopted a cat from the local shelter. We had two cats before but the older one died from kidney failure. The cat we got to replace her was sick with an unknown ailment and wouldn’t eat and was literally wasting away so she had to be put down too. So about this time, my visiting family helped me go to the shelter and pick out a new cat. Tiger came home, settled in, gained three pounds and is my little buddy. I just wish he wasn’t so dumb sometimes.
The next cycle was twelve weeks of Paclitaxel (taxol) and Trastuzumab (herceptin), getting a dose once a week for those twelve weeks. These twelve weeks are a bit more blurry. Taxol can cause allergic reactions in some patients so one of the premeds that I was given over these twelve weeks was benadryl; so I would fall asleep in the chair for several hours during treatment. I have never been comfortable sleeping in public places like that so I found the entire experience awkward and irritating. Also, one of the other premeds was to control stomach acidity; some patients end up with related problems otherwise. So I noticed mild changes in digestion (noticing more undigested food in the bathroom).
Taxol also has the unfortunate side effect of causing numbness or tingling in your hands and feet. I was very fortunate to not have this either. I did tell them that my feet felt “funny” sometimes during the duration of the taxol treatment, but this has since went away with the end of treatment. I spent the entire chemotherapy year treatment trying to keep up my walking exercise program that I started a long time before to lose my binge eating weight. So I wonder if walking/exercise helped control this particular side effect.
One of the side effects of chemotherapy for young people is infertility. I already had a hysterectomy several years ago, so this wasn’t an issue for me either. But I was warned that this process could kill my last remaining ovary and start my menopause early. And it did. I started to get hot flashes during this chemo cycle too. Wow annoying! I was told of some treatments for this but I turned them down. I felt that the hot flashes didn’t happen frequently enough to warrant aggressive treatments. Several months ago the hot flashes stopped on there own anyway so I don’t know quite what happened. Maybe I should look into it…. (I am curious to know what they tell male patients about infertility.)
I got called up for jury duty during this cycle. My oncologist is an old pro at getting patients out of jury duty LOL. I got it delayed for a year. Let’s see if my name comes up again.
The effects of chemotherapy are cumulative. I didn’t notice it so much during the first cycle because the doses were mercifully spaced out over two weeks. But when I was getting a dose once a week for twelve weeks, I really was feeling it by week nine or ten. By week twelve I was ready to be done with it. The chemotherapy program that I was treated with uses some kind of steroid as part of the pre meds cocktail that they give before the chemotherapy. I was told that it helps all of the other chemicals work better. It also may have been why I wasn’t nauseous during the entire time. At first, the steroid makes you a little flushed and may cause sleeplessness as side effects. But unfortunately, after six weeks it was starting to inflate my blood sugar measurements and I am pre-diabetic as it is. So my internal medicine doctor (also very nice and intelligent) made me prick my finger twice a day and keep track of a blood sugar chart. Annoying and surprisingly expensive! Also by week eleven, the accumulated steroid was starting to effect my moods and mental health. Luckily, both of those symptoms disappeared after this cycle was over after several weeks.
The third cycle is was a dose of Trastuzumab (Herceptin) once every three weeks. Herceptin alone is much less harsh; they didn’t even give me any pre meds for this. It is very specific for breast cancer. My oncologist gave it to me an entire year from July 2011 to July 2012. So it was nice, yet strange, to not have to come in as often. Also, once started, herceptin alone doesn’t take as long to diffuse into me. So I was leaving the hospital in the early afternoon as opposed to leaving late afternoon. It also made my pee smell funny.
Herceptin is very specific for breast cancer. I know that there are other specialized hormone treatments for certain kinds of breast cancer tumors but I didn’t get any of them. Apparently, my lump was just the wrong kind of lump and I didn’t have any of the kinds of markers that would respond to those kinds of therapy. Herceptin is also hard on your heart. So I ended up having more annoying MUGA scans.
Also, it was decided that it was time for surgery. My two first lumpectomies were done before chemotherapy started. And because the remaining herceptin cycle isn’t nearly as harsh as the first two that it was okay to get the double mastectomy done. I was sore for a while, but not in a huge amount of pain. I also had chest expanders put in so I could get my c cups back. I don’t want to look like a boy LOL. The most annoying thing about this was that they put two drainage tubes in me because if they left the fluid accumulate it could become infected. So trying to recover with those hanging off of me was irritating. (My new cat Tiger would sit on my lap and try to chew on my drainage tubes. Yeah, like I said before, he is kinda dumb.)
So for the rest of the treatment year, I was both getting herceptin once every three weeks and going to the plastic surgeon (nice, intelligent, but rather mouthy when excited) once a week to let him inject my expanders with saline. When the herceptin was done it was weird; now where will I go every so often? Also, being done with chemotherapy meant it was time to get the second chest surgery. I was waiting for chemotherapy to end so that the plastic surgeon would remove the port at the same time as he was putting the implants in. I didn’t see the reason to do that in a separate procedure in radiology again. If I had kept the port, which I could have done, I would have had to make appointments with oncology and let them flush it with heparin once a month indefinitely.
I am sorry this update turned out so long. But maybe somewhere out there a member of the-W.com or even a random lurker will find this helpful. Also, if you have questions, comments, suggestions, or even flames feel free to fire away. Particularly if you want me to add more about the mastectomy and implant surgery. Because I tried to make this update more about the chemotherapy end of it than anything else.
(It is weird not having nipples now. So I make a point to pinch Husband’s nipples every so often. LOL)
Glad to hear you're doing well after what's surely been a challenging year - probably longer; I remember the fibroids discussion in the Ladies forum. Also glad to hear you're negative for BRCA1/2. I have a friend who lost her mother, aunt, and 2 sisters to various cancers (breast and cervical, I think), and they were positive for BRCA2, I think - my friend and her daughter aren't, though. It sounds like you stayed amazingly positive throughout the entire process and surely that was a great help for your recovery as well. Good luck with your continued recovery!
As someone who only knows the pain of chemo 2nd hand, I wish you continued success as you recover and hopefully thrive for years to come!
"You are going to get a certain amount of snarkiness on the Internet no matter what, and my rule is that you don't post anything that you wouldn't say to someone's face." Marc Andreyko (Writer of DC Comic's "Manhunter")
The best monologues are usually the ones delivered by actual stand-up comedians who actually know how to speak in front of an audience and usually just rehash part of their stand-up routine. The old episode where Eddie Murphy (who was then a cast member)...