Tough times
 

Hello Everyone,

Well, it's been an interesting time with the chemo; after the first treatment on Jan. 12 I could feel the effects almost right away. At almost the week mark, though, I felt half-decent and went for bloodwork, to a support group meeting, out for lunch and to our local Safeway and Walmart. I felt like I was going to Europe because I hadn't been out of the house for 6 days. Within an hour of lunch I felt like I had the stomach flu. The next morning, Thurs the 19th, I had a call from oncology telling me to come in for a neupogen shot because my counts were so low. When I went in I told them I was feeling really crappy and showed the onc a rash that had broken out on my stomach and back. He didn't say much, so I went home and lay on the couch for the rest of the afternoon.

The next morning my son went off to school and one of my daughters was home for a few days, but went skiing. I dragged myself from my bed to the livingroom chair; I was weak, abit confused, and cold. I'm always cold, though. I was just cold-er. I remember phoning the pharmacist at the hospital (where onc is) and asking her about the rash and telling her I didn't feel well. She told me to phone onc. but I thought "I told them I wasn't feeling well yesterday, I'm not phoning" and fell asleep. Then the onc nurse phoned me because the pharmacist had phoned her. She had me take my temp and it was 39. Off to the ER where my bp was 91/46 and I was admitted for 3 days and put on reverse isolation. I figure I caught the flu or ate something (at a salad bar) when my immune system was non-existent and I became severely dehydrated. The doctors said it was a UTI and treated me for that. When I was younger I would get those infections mainly because I was so dehydrated. Anyway, after that fiasco you can imagine I was so looking forward to the next treatment. In all of my first 8 treatments I never landed in the hospital. However, I had been so sick before I was diagnosed and the H1N1 was floating around that I was really vigilent about being careful.

The second treatment was last Wed. and my dosage was cut back to 75% and I am on neupogen shots starting at day 3 for 4 days. The last 3 days have been spent laying on the couch and looking at the beautiful days outside. There is a fine line between wanting to knock the bad things out of my body but needing to take care of my immune system. Am I doing the right thing? Four more treatments. Then I torment myself about how many more days and I'm just wishing time away. Arghhhh!

I don't like feeling so down; I just want to be better and know that I'm doing the right thing by putting my body through 45 rads and 14 chemos in 2 1/2 years.

Thanks for listening (or reading). Time to veg on the couch again

Caroline

Re: Tough times
 

Knock those bad things out of your system. and to do that your immune system takes a hit but first you have to kill the baddies which leaves your whole system weak but then after you get through all the treatment you can rebuild the good stuff. rest and be patient. that's why you can't take any supplements during chemo or radiation that might fight the treatment.
health and happiness
love sarah

Re: Tough times
 

It has been said "when you're going thru hell, keep going"! Try to keep your eye on the prize and remember that this is temporary.
Keep the faith

Re: Tough times
 

Caroline - had a very similar experience after my 2nd chemo of TCH in 2010. Same symptoms and ended up in reverse isolation with UTI and systemic infection. 8 days later I got to come home and did reduced txs for 2 more times then had to stop altogether. I know what you mean about just feeling so down and unsure. We never know until much later what the lasting effects of our treatments will be. I now have macrocytic anemia (taking B12 shots monthly) and some permanent lung damage from the 33 radiation treatments (didn't manifest until 6 mos after treatments finished). Even with those complications and long-term effects, I'm glad I fought as hard as possible when I did. I'm never going to be 100% of where I was before cancer but I'm also 63 and so much more healthy now than I was back then - lost lots of weight and taking better care of my self mentally, physically and spiritually. So be gentle with yourself now when you are low and give yourself a chance to recover after all the harsh treatments are over. I sometimes can't believe it's been almost 2 years since I was diagnosed and I pray you'll feel wonderful again soon.

Re: Tough times
 

I agree with all of the above, its frustrating and depressing going through tx but we get one chance to try to ensure this does'nt return so keep going and know it'll be worth it and you'll be very proud of yourself for hanging in there!

Re: Tough times
 

Hi Caroline,

I'm thanking God for the pharmacy calling your onc office. That sounds like it was a close call. I have had the same thing happen where my treatment caused my blood pressure to plument and I ended up in the hospital, 2 diff. times.

I am so glad you were able to get help. Hang in there, you will get through this. Many of us travel this road of unexpected twists and turns and we look back and thankfully these harrowing times become vague memories....we get stronger and keep going. Tomorrow is generally a brighter day!

Re: Tough times
 

You have to do whatever you need to do to take care of your health. If that means sitting on the couch, so be it.

But, do call the doctor when you don't feel well, even if you told him before. Nobody cares about your health as much as you! Doctors can and do miss stuff, even with the best intentions. So, be pushy, it works.

And, of course you are doing the right thing! You are doing the ONLY thing.

Re: Tough times
 

Thank you everyone for your responses; I am SO glad I finally joined this site. 7andcounting, in my haze the other day I didn't mention that I went to personally thank the pharmacist for phoning oncology; I also Thank God because someone was looking out for me that day. The oncology nurse saw me while I was in the hospital even though she was going on a trip the next day.

I was so down in my post because I didn't mention that at my second treatment all went okay after the Docetaxel, but when I had my Herceptin infusion I had an episode where my heart was jumping and I had warm flushes with a racing heart and I had to be given steroids and oxygen. I had been out of breath the week before from just getting out of the hospital and I usually ask to have the infusion over 90 min, but forgot and they gave it to me for 30 min. Has anyone else had something like that happen? I have regular echos every 3 months, as I did the first time I was on Herceptin. I had also had out of breath and weakness issues but when I went off the Herceptin they resolved.

Since now I will be on Herceptin indefinitely, I'm wondering if maybe I should see a cardiologist. I am on low-dose beta blockers (which they took me off in the hospital because of the bp issues) but not really being monitored because the internist I saw at the time who prescribed them, has moved. The reason I went on them in the first place was that I was so sick and having bp and heartrate issues before I was first diagnosed, that the internist recommended, because I was to have AC and Herceptin, that I go on them. Within a month I started feeling better- not so shaky and jittery anymore. My onc knows I'm on them, but we haven't really discussed whether I should stay on them or what. My regular gp is on a year long leave. I try to walk as much as possible to strengthen my overall body. In fact today I will try to trudge around town because I am feeling abit better and my plan has always been to get up and get moving as soon as my body feels it's ready after chemo.

On my first set of chemo I was on a 3 week schedule but I still needed Neupogen shots for 4 days and then a few days before my next treatment. In the hospital I needed 3 shots before the counts got to one point above the lowest of normal. After the second treatment I started the shots on day 3 for 4 days and just found out yesterday that I'll need 3 more days at least. (glad I wore a mask to the lab for the bloodwork because I had to wait for half an hour) I knew I would need more because I can feel when things aren't right and my body wasn't even aching after 4 shots.

Obviously my body is being hit by the chemo. I always felt so much better the first time around overall when I had the Neupogen shots. But is that a good thing? Do I want my body to feel totally down because then it's also hitting the cancer? The Neupogen basically makes my immune system able to handle the next chemo-I read somewhere that the white blood cells should be "wimpy" because then the chemo can be more effective(or something like that). Since I will have had so many Neupogen shots, in the long term is it safe? Should I switch to Navelbine because it's not supposed to be as harsh? Or should I stay on the Docetaxel at a lower dosage?

The reason I went on the chemo, because it was up to me, was that although there was no evidence of cancer anywhere but a 3cm hole in my sternum, I wanted to wipe out any microscopic cells. I asked the onc at the larger centre if that is what she would do and she said yes. I got home after radiation and the local onc says Letrozole and Herceptin without chemo is just as effective. That duo is my plan after chemo.

It's hard because this time there is no protocol for my situation like the first time, no one telling me "this is what you do" and I did it. I especially don't have alot of people in my situation.

Coolbreeze, I am beginning to think I have an oligometastasis although no one has told me that; I only learned that from your experience (we are close to the same date of original diagnosis and treatment) and this site. They don't even know what really happened; one onc said with the cells going through my body, they just stuck in my sternum. The rad onc said maybe the cancer went to the internal mammary chain and then into my sternum. It just happens to be maybe 2 inches from the original tumour, so I believe him more.

Anyway, I hope I make sense because I'm still abit tired. I really appreciate your kind words and input.

Caroline