Chemo Report--The Good and the Bad

I had my first round of Adriamycin/Cisplatin two weeks ago and didn't have any problems other than a few days of post-treatment shakiness from either the Decadron or my absolute terror. I never had one bit of nausea or any flu-like symptoms like I had with taxol/carbo. Pepcid AC took care of a little heartburn and I have felt GREAT every day. But apparently these poisons are sneaky. This past week my white count tanked, down to 0.2 when it should be at least 1,000 and preferably 2,000. My platelets are also way too low. I had to have Neupogen shots Thursday and Friday, and after Friday's bloodwork I got a call at 9:00 that night from my chemo nurse saying the doctor had ordered me in for another Neupogen Saturday. This guy is watching me very closely. The front office ladies told me that my chemo nurse nearly had a coronary when she saw how low my white count had gone. Apparently, one of the other nurses had missed the instructions that I was supposed to be getting Neupogen 3 times a week, and I didn't get two I should have. She was getting ready to go on vacation, and I can guarantee she'll be hearing about this when she gets back! It's too bad because I really like her, but she slipped up. From now on, I'll be asking everyone to triple check the doctor's orders.

My "pharmaceutical assistance" has kicked in, thank God, and I'm feeling much more positive. It was a miserable couple of weeks after I found out about those two new spots. I had only told one friend about it because I wanted to keep it a secret from my principal at school until later in July. I didn't want her to try to talk me in to retiring early. Well, laying low was just a bit too obvious and my principal called me the other day, concerned because I am usually up at school during the summer and have emailed her six times by now! So, the truth came out and she was very supportive. That was a great relief to me, because keeping my illness a secret from her and worying about my job was making me sicker than the cancer!

One more week until treatment #2. I hope my white count and platelets will improve during this coming week. My chemo nurse said the doc might have to reduce my dose and I don't know what effect that would have on my spots or the duration of the treatments. In the meantime, I am rattling around this house with nothing to do and going stir crazy!

Adrienne

Hey, Adrienne,
Good to hear from you. I'd been wondering how you are doing.

Sorry your counts are tanking but it sounds as if you have a great doctor and supportive principal. Those things mean a lot!

I'm so glad you're feeling well because that goes a loooooong way to kicking this disease into positive territory. It makes it so much easier to fight it if you feel well.

Hugs and prayers for a smooth Round Two,
Kate

Kate,

I was hoping you'd see my post. Although I've not posted much, I've been keeping up with everyone and knew you'd finished your clinical trial--I hope with positive results! I was very surprised to feel so good after the first treatment of Adriamycin/Cisplatin. When I commented on that to the doctor, he said "it's early yet". I know everyone's response to chemo is individual, but what do you think I can expect from round 2? I can't do much about the white counts except get those shots, but I hope I continue to feel well. I have lots of workshops to attend in July.

Thanks for being there!
Adrienne

	Quote:
Originally Posted by Teacher2 Kate, I was hoping you'd see my post. Although I've not posted much, I've been keeping up with everyone and knew you'd finished your clinical trial--I hope with positive results! I was very surprised to feel so good after the first treatment of Adriamycin/Cisplatin. When I commented on that to the doctor, he said "it's early yet". I know everyone's response to chemo is individual, but what do you think I can expect from round 2? I can't do much about the white counts except get those shots, but I hope I continue to feel well. I have lots of workshops to attend in July. Thanks for being there! Adrienne

Hi, Adrienne. You're way ahead of me so far. I think you'll do fine.

Between Round One and Two, I got strep throat. There was an outbreak in the area where I went for treatments last winter. So I went into Round Two with thrush from the antibiotics and had really bad heartburn after Round Two.

I didn't get started on the Pepsid AC on a daily basis until Round Three so I went to an internist again after Round Two for the thrush and for heartburn. He really pulled me through the first three rounds so I gave him and his nurse each a box of chocolates when I finished Round Seven. (She gave me the Nuelasta shots.)

The week following Round Three, I got blood poisoning after a fall on a country driveway. Again, something most people don't do.

The bottom line however, with each of these three oddities is that once I had medicine from the internist, I perked back up within 36 hours of starting the medicine and felt normal again. I still consider myself as having done well on these chemos. I had a lot more normal days than down days.

The last four rounds were easier for me in a lot of ways because I had the heartburn under control and I wasn't getting other oddities. I did sleep more days after chemo as the time progressed but even after round seven I felt back to normal within a week.

It is important, I think, to have bottled water by your bed so when you wake up from the long sleeps you have water to drink before you fall back to sleep again.

You might want to ask your doctor about Neulasta instead of Nuepogen shots. It is one shot (expensive $3000 each)versus the multiple shots. It did give me mild bone pain during the early rounds but nothing that one Tylenol didn't kick to the curb.

I had a thigh muscle / hip bone "lock up" for a couple of days after Round Four. Although I didn't feel like walking, I made myself walk more than I had been and it resolved itself.

Tuesday will be the two week mark after my Round Seven. If I just had my full eye brows and lashes, I'd be fine.

Only thing that isn't fully back to normal is if I walk a lot, I get a heavy feeling in my thighs. Didn't notice this until after the last round but it has gotten better since the first weekend. (Hardly made it to the barn and back then. Now I can with resting once along the way.)

I do have numbness / tingling in my feet and sometimes my hands but I don't notice it unless I stop to think about it. However, the weekend after Round Seven, it was bothersome.... burning, tingling, numbness. If the burning stays away, I can deal with what I have now.

I've been told the neuropathy may come and go for months after chemo.

Also, if it becomes bothersome or severe for you during treatment, you need to let the doctor know because he might want to lower the dose of one of the chemos.

Did they tell you not to eat raw vegetables like lettuce when your counts are low?

Except for three to five days* (and occasionally a sixth day) directly after each chemo round when I needed to sleep and was mentally foggy, I would have been able to attend workshops without a problem. Just beware that you may find yourself spelling funny and have trouble deciphering your notes at times. :bigwink: I call it "chemo-dyslexia" because I find myself using the strangest word or mispelling something at times.

*(The week I had strep I think I was down until probably Day Seven but I didn't have a fever so I didn't think it was strep. Thought it was from chemo. Didn't go to doctor right away. I was told with chemo you sometimes run a lower fever than normal.... 97°... but remember if you do run a temp of 100°, you need to be calling the chemo doctors to let them know.)

The best tip that the internist told me was to not look for patterns that correlated with a specific day, for example, Day Five after each Round. Because I'd had some oddity starting on Day Five after each round in the beginning, I sort of thought that was going to be the norm. It wasn't...like the thigh / hip pain that occurred once but not after other rounds. It was from the chemo most likely but it didn't continue.

Oh, as usual, I've written a book instead of a short answer.

Hugs and prayers that you continue to feel well during the chemo and that the counts go up.

Kate

Ok, so I need to stay away from sick people and try not to fall on the driveway! I'm concerned about what will happen after school starts in late August. The children always start their colds and sore throats after the second week and I catch everything from them. When the time comes, I'm going to ask the onc. about the possibility of going on a low dose antibiotic.

I just had to take the Pepcid for the first week after Round 1. I learned the hard way to take it BEFORE dinner instead of AFTER. I forgot to mention that I did have thrush last week. I noticed a little patchy place on the inside of my cheek and showed it to my chemo nurse that afternoon. I was put on Diflucan immediately and by the next day it was gone. I have one more pill to take today, and refills if it shows up again. Mu Potassium is also too low and I'm taking P. tablets for 10 days.

I'm drinking a lot of water (ugh!--Love my Diet Coke!) and have taken previous advice to keep a bottle by the bed, and I do drink it during the night, since I wake up often. I know the Cisplatin is very hard on the kidneys, and I'm afraid of that. A dear friend died last October because of the damage Cisplatin did to his kidneys. I haven't been drinking as much this week as the first week, and should probably try harder.

I had Neulasta after the first four rounds of Taxol/Carbo last winter and the bone pain was terrible. Even Vicodin didn't help. After that fourth Neulasta shot, the pain was so out of control that it was the only time I ever had nausea. I said, "No more!" and the onc. switched me to Neupogen, which kept my white count high through the rest of those treatments and the bone pain disappeared except for the little achiness that the taxol caused. I have to drive over the the doctor's office more often, but it isn't too far and I am willing to do it.

I had neuropathy from taxol/carbo, which was irritating but not severe. Two toes on each foot are still numb, but I think getting better. I've been warned to watch for it again.

Yes, I have been ordered not to eat fresh fruits and vegetables right now. I didn't even think about that when I ate cole slaw from Chik-Fil-A last night--oops! I've been avoiding salads anyway because I wasn't sure what the chemo would do to my stomach, and I'm starting to stare enviously at my husband's dinner plate loaded with mounds of crispy lettuce and spinach. For revenge, I won't tell him where the chocolate is hidden!

I think being off for the summer will go a long way toward helping with fatigue. Since I am up at 5 a.m. all during the school year, I make up for it by staying in bed later than I will admit to on this board. I take naps when I want to, and sit and read much of the time. I'm not doing any yardwork this summer. I am really, truly resting. Funny--I noticed last night when I climbed the stairs to bed that my thighs felt "tight". I attribute it to needing more excercise, but will be alert for any more of that.

Kate, you have helped me so much. I have a lot of friends who have or have had breast cancer, but no one has had to have chemotherapy and I don't know anyone who has had these drugs. It's a very lonely feeling. I made it through taxol/carbo and didn't feel nearly as well as I do now. I am going to take that as a good sign and try to stay positive.

Thanks again, so much!
Adrienne