Starting Chemo May 2017

Checking in and sharing my experience thus far hoping it can help others as to what's to come. Had first treatment of TC a week ago today. Treatment day was fine and no issues. For three days after it was all about managing the nausea. Felt very tired like I had the flu. Use the anti nausea meds. I had a shot day of and then had to take emend for two days after, then took compazine and I have zofran also which I never took. On Saturday I woke up and nausea was gone. So basically three days of feeling like crap. Started feeling better Sat and thought worst was over. Sunday night I started feeling back pain which turned into non stop severe back spasms for about 18 hours straight. I thought it was side effect from Neulasta shot which my MO confirmed. He said take Claritin which I should've taken day of Neulasta shot and I will do that next treatment and he said I could take Advil. I had tried Tylenol for the pain and it did not work at all. The back spasms were debilitating. My MO said it shows your bone marrow is doing what it's supposed to do but not the best way to realize that. Advil was an instant relief and today they have passed. So today I'm one week out and feel actually normal today. Getting blood levels checked today and meeting with MO this afternoon. My next treatment is in two weeks. If I can go the next two weeks feeling like I do today then I will be thankful. Hang in there ladies!

Also taste buds have changed, don't eat anything you love when feeling nauseous as you might develop an aversion to it. I found carbs were my friend, buttered rolls, rice, even French fries, ginger ale.....whatever you need to get through the first few days. I was initially so worried about following nutritionist advice and then realized I just need to get through these few days. I've been using Biotene mouth rinse four times a day and have not had any mouth sores. Hair has not started falling out yet. Expecting that any day.

msrobin58-- so glad you are home. Take it easy today and enjoy your home and garden.

Hi ladies, my first TC Chemo was last Tue 5/9.

Luckily no nausea so far, just weakness and some light-headedness. I went to work Thursday and Friday, the commute was a bit of a challenge though. Celebrated mother's day with my boyfriend's family at a restaurant and did some shopping too on Sunday. I try to keep it moving. But since Sunday night, I developed this excruciating, throbbing back pain like I had never felt before. Tylenol helped some but it would come back in a few hours later. I read online it often happens to people who use Neulasta. I talked to a nurse and went to get Claritin. Didn't help much yesterday, still had the late night pain, I had to wake up in the middle of the night to take Tylenol so that I could get some sleep. Talked to a nurse again and she recommended Motrin and also prescribing me some pain medication. The pain totally incapacitates me, hopefully I can manage it.

ParakeetRules, During my "chemo counseling" I was told that I would have to come into the clinic on Day 2 for my Neulasta shot (my onc clinic also doesn't have the pod for automatic injection) and to take a 24-hr Claritin between 30"- 1 hour BEFORE Neulasta. Claritin to be taken for 7-10 days, as long as bone pain lasts. With Tylenol and Advil as needed when bone pain is not relieved by Claritin alone.

ParakeetsRule, A sudden urge to clean and organize? That would be a great side effect of pre-chemo steroids, since lately I've had no desire whatsoever to vacuum! But I don't think my MO will be giving me IV steroids prior to AC. I've been told that I will receive Emend and/or Aloxi (for anti-nausea, -vomiting), Pepcid, Tylenol and Benadryl as my pre-meds. I haven't been given a prescription for Zofran. But if I feel nauseated after chemo, I'm to start taking Compazine 5mg, 1-2 tablets every 8 hours. And if I'm nauseated at night or have insomnia, to take Lorazepam .5-1mg every 8 hrs as needed, 30" to an hour after the Compazine. I think that whether I feel nauseated or not, I'm going to start taking the Compazine on Day 1 instead of waiting til Day 2 (instructed to take 1-2 tabs a few hours after waking). Glad you're feeling better today. Hope the Neulasta SEs are mild.

Hi Everyone!

I'm too spacey today to keep everyone's posts straight in my head, so I guess I'll just give a synopsis of yesterday's first chemo infusion. Apologies for not being more personal. I'm on so many topics and I'm pretty new...having trouble keeping people and threads straight.

I spent 8 (count 'em, 8) full hours at the chemo clinic Monday! first a blood draw, then appointment with MO, then the long hours of infusion, then installation of the Neulasta cartridge thing. LONG DAY!!! but it went pretty well. Two of the meds (Herceptin and my iron infusion) made me hot and gave me a headache, but otherwise I was okay.

Slept the sleep of the dead last night. Woke up with only one dog in the room (there should have been two--lol--how did that happen?) and with a sore throat (probably snoring). Later in the day some nausea started, mild headache continues, i'm feeling a little weak, and my tongue feels like sandpaper. Mom says I smell a little funny, and the dogs agree. My pee smells weird, too. But so far, I can't complain.

The dose of Neulasta is due to dispense itself around 7pm. For those who don't know, it's supposed to stimulate the bone marrow to produce more cells, to keep up the blood counts. But has an unfortunately common side effect of bone pain. I hate bone pain, so I'm taking Zyrtec because we don't have any Claritin, and my MO said it probably doesn't matter precisely which drug we take. But I'm getting the impression he isn't a big fan of "off-the-label" uses of meds and supplements. He seems quite well-versed in mainstream medicine, but it's clear that complementary treatments don't impress him. As long as he doesn't fight me on it, I'll let him live.

Again, please forgive me for not being more personal here...I was too tired to log on last night, and have been pretty overwhelmed today, and now I'm getting sleepy and it's only 4pm! Ugh, cancer is HARD!!

MamaEnki, First I've heard of Zorxio in place of Neulasta. No bone pain? Sounds great.

Hi everyone. I started chemo the end of March and am half way through. I get treatment every 3 weeks and the rounds have become a little predictable - same but different.

Everyone is really different and that is what I learned. I was really afraid to know too much in the beginning because I didn't want to freak out about side effects I might not get. So read if you want but know your journey could be really different.

Week one – getting chemo doesn't hurt at all; just tired. Day 4,5,6 are hard. Side effects are bone pain, feeling very cold (without fever) and bowel problems (more on that below).

Middle of week 1 crossing into week 2: don't want to think and have a hard time communicating how I feel

Week two – first few days - everything tastes horrible, dry mouth, gray sticky tongue … after that … starting to get some energy back. I have gotten a rash this week on the top of my hands and lower arms – goes away by week 3 but have dryness, peeling and irritation that is still there.

Week three – pretty good. A little tired but I can eat and talk and get my courage back to go through it again.

The one thing I was not expecting at all was the constipation and I mean at a level I did not know existed. Pay attention and ask your treatment providers …… not going for a couple of days can become a nightmare if you let it go. Use the magnesium citrate if prescribed - it's worth it.

The loss of hair bothered me at first but now I don't even care - just getting through it is what I am focused on.

I am very lucky and always look for the positive even in the middle of the worse parts. I have learned I am stronger than I thought I was and that I am not alone.

I set up a private facebook page for my closest family and friends – the people that I trust wont judge my thoughts or choices ……. and post all kinds of things there – that way they know what I am going through and I don't have to tell them all at different times. I even use it to ask for help and post my schedule so everyone knows when I will be where and doing what. I also post positive things for them and articles for care providers – they are going through an emotional roller coaster too and need to know everything is going to be ok. It helps for me to get it out.

Brneyegrl6608- I was where you are just a week ago. All feelings you are having are so normal and so understandable. One week in for me and today I can say I'm feeling very good. Take it one day at a time after your treatment. Read the posts above as to what others have experienced first week and how you can prepare. All good thoughts sent your way tomorrow. You can do this and you will!

Notanisland- all good energy sent your way for tomorrow!! Pay attn to what's going on with the side effects so you know for next treatment. Biggest surprise to me was the severe back pain/ spasms from the Neulasta and they started 4 days after I got the shot. Next time I'm taking Claritin day 1 also and for a week after. I had my counts checked yesterday one week out and my MO said my counts are excellent. I said they better be as I felt every single one of those extra white blood cells being made and it was not fun. Just thankful that by the time the back pain started the nausea had subsided. You got this!

lovepugs77 - best of luck today. I had AC yesterday and still riding the pre-meds so will work today for 10 hrs and be off Fri-Sat-Sun so I can rest and take it easy

lovesplug77 - do you have anti-nause pills at home already? My MO said to take the first script when I get home. Then x number of hours later, take the second script. After that for me, I am to take each at regular scheduled intervals for 3 days. Then as needed after that.

Also, if you are getting a Neulasta box, take a Claritin today and then 1 every 5 days after that to minimize bone pain (I was lucky-- no problems at all with Neulasta) oh-- and I took 1 Tylenol 30 mins before Neulasta does its thing 27 hours after chemo. And, if you do have Neulasta, once it delivers its dose (takes about 45 mins) and the green light is solid and box shows empty, you just grab a pinch of tape around the bos and pull it off and toss

Thailinh, we seem to have ignored you. My tumor was 1.2 cm, no node involvement, and I was also told not to worry, because I wouldn't need chemo. Unfortunately, it was also ILC, and I had an Oncotype score of 24, right in the middle of the intermediate range. Because ILC tends to hide and recur later, I am doing the chemo, and will be starting some time next week. Can say I'm looking forward to it, but I'm on Medicare and have a good supplement, so am not worried about the bills, and work from home, which I may do a lot once I've lost my hair. I know I'm too self-conscious to go bald in public. I'll need to buy my wig next week, so they can match it to my hair. At least I've worn my hair short the last 40 years, so it won't take long to grow back. I just have to hope I'm one of the lucky ones that doesn't have any permanent hair loss from the Taxotere. I'm more worried about neuropathy, but am hoping for the best there as well.