Starting Chemo March 2015

thinking of you today Diane, with the port placement.

Italychick- jealous of your baby whites! Mine were 1.6 on Thursday with Neulasta. I'm sure thry will start going back up this week. I like your docs approach. She knows being active is a big part of your life and your treatment plan supports that

jack birdie--

I too had trouble drinking all my fluids-- especially with no taste! I learned though to think of it as a flush for all the toxins in my system and that the water was a way to get the chemo in and out faster. Helped me suck that water down a little better! Glad you get to taste some of the additions to water. For me, all I got was a chemical taste, but I really did feel better when I got all of my water in!

Best of Luck.

• Patty

Went on a 9 mile hike yesterday - first exercise since November, before surgery and diagnosis. It was great! I didn't ever feel tired or like I needed to stop.

Now that I'm feeling better I'm also having a hard time drinking all my water. I've been supplementing with gatorade. Going to the store today to also get jello and popsicles.

I think my hair is falling out a little more than normal the past few day too. Trying not to think about it. I'm using the cold caps, so just waiting to see just how much I shed and if the caps are working or if I'm gonna just shave and go the wig route.

My hiking buddy!

WPmoon! You are a rock star! Nine miles and feeling great. So very happy and proud of your buddy too, who must have enjoyed It also, You two are ADORBS together.!!!

avmom I hope this round goes easier for you and glad the MRI showed the liver thing just looks like a cyst...whew!

My chemo-brain fog has temporarily lifted and I just wanted to outline my first round of AC. It' going to be long, but detailed for anyone who wants the gory recollection...

Disclaimer: My response is my unique response and I'm only sharing it for informational purposes! There are plenty of people who respond WAY better than I did!

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Day 1 - Thursday (infusion day): Had my port placed at 0800 and then went down the street for infusion. Got started around 1000. They did 3 'pre meds' (Aloxi, Emend, Decadron) and had some fluids running too. Once they saw I did ok with that they brought out the Adriamycin aka 'Red Devil'. It was in a large syringe and the nurse manually pushed it over about a 15 min time period. I didn't feel anything with that. The nurse told me I might pee or sweat red for a day or two but not to worry. Then they watched me for about 20 min and when they saw I was doing ok they hung the Cytoxan. The Cytoxan was colorless and looked like a regular IV bag so DH had to get up and check the label just to be sure The Cytoxan ran for quite a while - maybe 90 min? During the Cytoxan I did get a little funny taste in my mouth and the tip of my nose was tingly. I told the nurse and she said it was normal and not an allergy. After the Cytoxan I asked them to top me off with some fluids so they put in another 500 mL of normal saline. They sent me home with my Neulasta shot already drawn up (I have someone to give it to me at work) and told me to start taking the oral meds (Zofran and Compazine) in the evening and have a light dinner. We left there around 3:30 pm

DH drove us home and picked up DD and we went to an early dinner. I ate 3 pieces of grilled shrimp because I really wasn't that hungry. Before the check arrived I was already starting to feel the nausea coming on. It came on suddenly and I had to lay down on the bench in the restaurant. I don't remember paying the bill but next thing I remember my DH had me in the car and headed home. The car ride home was brutal and I had my face in a plastic puke bag but I didn't vomit. I had the following symptoms:

• severe nausea
• hot/cold sweats
• chills
• almost passed out
• headache
• my body lost ALL color

Then I got home and DH sent me to bed with a puke bucket. He ran to the pharmacy to pick up Zofran and Compazine prescriptions. It took him about 30 min to go to pharm and back and then I took one Zofran and one Compazine. Then I prayed. Then I think I passed out (but really I probably fell asleep). I continued to have most of the above symptoms for almost 12 hours and I cried to DH about how barbaric this treatment is for this 'don't worry, it's curable disease'.

Day 2 - Friday: I slept most of the day and continued with the nausea meds. I tried to drink water. My medical assistant that works for me offered to come to my house and give me the Neulasta shot. I had taken Claritin that morning and she gave me the shot around 4pm. Back to bed. Some neck pain from port but not unbearable.

Days 3-4 Sat/Sun: I was mostly laid up in bed with severe fatigue and some nausea but the other symptoms had gone. I was continuing the Zofran and Compazine as directed although I have to admit that I would cheat and take it an hour early if needed. Less neck pain from port but still a little uncomfortable.

Day 5 - Monday: I was better with most all symptoms except fatigue and nausea but then I started getting really lightheaded and when I stepped on the scale I was down 7 pounds. Couldn't stay focused long enough to read an email. Tried to stay up but ended up back in bed. Port pain almost gone.

Day 6 - Tuesday: Tried working and got through half a day. Back to MO and they decided I was severely dehydrated. They gave me 1.5L of fluid before I finally felt like I had to pee. I want to note that I was peeing the whole time BUT it was because I take a diuretic for my blood pressure. I was fooled thinking that if I was peeing I wasn't dehydrated. Wrong! The diuretic would make me pee even if I wasn't hydrated so it was making it worse. So I decided to stop the diuretic for a few days and just keep an eye on my BP. Scalp getting tingly. No port pain that I can recall.

Day 7 - Wednesday: Did a full day of work. Stopped Claritin (because it was only recommended for 4-5 days after Neulasta). I felt MUCH better being hydrated! Had a pretty good day but then fatigue and nausea set in around 4 pm and I was pretty much done for the night. Scalp was getting tingly.

Day 8 - Thursday: Woke up at 2 am with a steroid buzz and couldn't go back to sleep. Did a full day of work (drove my co-workers crazy) and felt pretty good. Got a little tired in the evening but I didn't push myself. Scalp still tingly and now somewhat tender too.

Day 9 - Friday: Still didn't sleep well (4 hours) but steroid buzz was wearing off. Went in to work early because I couldn't sleep and around 6:15 in the morning, while sitting at my desk I got a twinge of pain in my low back. Thought it was weird but I ignored it. 2 min later I had sudden onset of severe, debilitating pain in the bones of my low back and hips. It brought me to tears within minutes and I popped 2 Fiorcet (my migraine med but it's all I had for pain) and went to the Physical Therapy room to lay down on some moist heat. I called DH crying hysterically and he calmed me down, prayed with me, and was concerned that I was there by myself. He wanted to come pick me up but I had several patients that I had rescheduled to that day and I really wanted to see if I could get through the pain and still work a few hours. After calling me stubborn, he decided to call me every 10 min to check on me. After the pain med kicked in (appx 15 min) I was at least not hysterical anymore. I battled that pain all day and only had about an hour of tolerable pain every 4 hours (only when the pain med was working). I saw the 'essential patients' that really needed to be seen and then went home. Called MO and sent DH to pick up Rx for some better pain med. I got home and sat in the hot tub and took some pain med. I had also taken a Claritin earlier in the day when I realized it was probably Neulasta related. Had a rough night in and out of the hot tub and constant dosing of pain med. During one of my episodes of pain relief I buzzed my head. I let my 13-yr-old DD chop and style for a while and then I was getting uncomfortable so I told her playtime was over - buzz it! She had a blast and said it was the best day of her life We made pretend like I got my hair stuck in the door - like the drunk chick from movie 'Sixteen Candles' and took a little video of her 'freeing' me from the door. It was a hoot! After the buzz, my DH said the sweetest thing...he said "you know babe, I was all prepared to suck it up and lie...and say 'it doesn't look that bad', etc...but I have to tell you that I find you stunning and I think your hair was distracting from your true beauty". He may or may not have made some comment about giving him a b*ner but that's just between us I love that man!

Day 10 - Saturday: Still some residual bone pain. Took a Claritin and pain meds throughout the day. Pain started to ease up by the end of the day. However, then I started getting some epigastric pain. It felt like I ate too much except I hadn't eaten much at all. I started to get a distended upper abdomen. A heating pad helped some. No nausea though. Spent 2 hours at a friends' house for her 10-yr-old birthday party and while I was there I went pee and it was painful to wipe. Sorry if this is TMI but this is me and this is real. I realized that I had a large pimple on my vag and it popped. The only reason I mention this is because I had spent so much time in the hot tub and I'm sure that with a decreased blood count, I must have picked up a little bacteria down there - just something to think about! Put some Neosporin on it and it's been fine since. Called MO because of abdominal pain and he said he wasn't worried but he called in a script for Prilosec and said to take it once a day and if that didn't help, up it to twice a day. Pharmacy closed but picked up the OTC version and took the prescription strength until able to pick up Rx.

Day 11 - Sunday: I still had epigastric pain but managed to make it to church. That was about it for me that day and then I went home and watch chick flicks all day. I realized that evening that I hadn't had a BM in over 2 days. Thinking I might be 'backed up' and that might be contributing to the abdominal pain, I decided to do a warm water/castor oil enema. It did have some effect and made a slight difference on the abdominal pain. DH and I joked about what new possible side effect I might have next...swollen earlobes? toe cramps?

Day 12 - Monday: Still some epigastric pain but somewhat better - at least it's manageable. Some fatigue. No bone pain. No nausea. No swollen earlobes or toe cramps LoL. Made it through a full day of work with a lunchtime nap. 2 of my patients cried because they saw me with my scarf on I am going to see the chiropractor in about an hour and then I'm calling it a day.

I have an appt with MO on Wed to discuss if any changes need to be made to pre-meds (to prevent the severe reaction) and to have him check out my abdominal pain. Then Round #2 on Thursday. Oh boy...just when things were getting under control...

Sorry if it was too long but I know there are some who haven't started yet and want a lot of detail.

Stay well!

Bekah

a very detailed summary and I know it will be helpful to many, Rleepac.

Your husband is a gem.

So glad you are feeling better, wish you could enjoy a few more days of smooth sailing before round 2 though.

Rleepac! Thank you so much for the summary. Your detailed day by day has been extremely helpful. I found the day by day to be very educational and provide at least some expecation - it feels so overwhelming when we are told to expect all of these effects, but then they tell us we may or may not experience them (clear as mud). I think it is important to track the day by day as each of our side effects can be different, and from what I understand we can develop new ones!!! Rebecca were you able to choose the day you started? Are you on every 2 weeks? Even with the nausea meds, were you still really sick?

Has anyone taken probiotics during chemo? Did they help at all? I also read that alcohol and caffeine are no-go while on chemo? Although based on how horrible you feel I am guessing you don't want them anyway. Did anyone take a little 'cooler' to their infusion?

I will be given the same AC every two weeks, and then taxol every two weeks each for 4 rounds. I just picked up 6 prescriptions from the pharmacy today...wow...talk about intimating. They gave me zofran, compazine, ativan, aprepitant, decadron and Neulasta...I think 4 of these are for nausea. I guess I am also getting a cream for my port...and whatever else they prescribe.

To those who have already started, your sharing your experiences is so helpful to those of us in the holding pattern until the day arrives.

Good evening all-Had a detailed message offering feedback for a change then got a phone call from a friend I haven't heard from for a very long time. Left the laptop and came back-gone!  I do remember wanting to say thanks Katy, for positive thoughts on my port day. It went fine. Sore but not too bad. Hubby and I stopped to eat at the Silver Diner on the way home. By the time we made the over hour drive, I was hurting bad! Took a leftover Percocet and covered myself in ice and now much better!

Italy-We are almost the same age. I'm 53 for a couple more weeks, triple positive and will be getting 6 rounds of chemo three wks apart. Taxotere/Carboplatin/Herceptin/Perjeta. Do you know why you aren't getting Perjeta? I wonder why I'm not getting Neulasta shots? I guess I can ask about the shots tomorrow and maybe educate myself prior. I'm getting my chemo bag packed thanks to you and others on this friendly thread.

First chemo tomorrow starting at 9am-six hours or so. Anyone have suggestions about what they've found easiest to wear with the port and possibly a cold room? Oh, I guess I can figure that out on my own. I think I just need to hear it will be ok from the group...I'm such a wuss!

Happy St Patty Day to you all! I will try to send a message from the frontlines tomorrow.

Diane

Diane- so glad today went okay. Was thinking of you. You might be sore tomorrow. Ask them to spray the freezing stuff onyour port area before they start. That will help.

Front closing things seem to be best, and that way you can layer according to how they have the temp in there. I almost always wear slides or slip-ones for shoes, but I found my feet got a bit cold, and made sure I had a thin pair of socks in my chemo bag for next time, March 26th.

They gave me a crocheted blanket from a volunteer organization. Just handed me a box and said pick one and take it home! Very sweet! But if you have a small lap quilt or something that gives you the literal and figurative warm and fuzzies, put it in to take!

They will take very, very good care of you. You will be nervous, and that's ok. Tell them everything you are feeling, even if you think it is minor. Let them be the judge.

You got this

Diane, to reiterate, I took a foot basin (plastic dish tub from target) and a bunch of ice, and iced my feet. Food - I ate more than I thought I would. My computer, kindle, iPhone with music play lists, head phones. I worked and listened to music the whole day. I also took a clip because they taped my IV line to my shirt which was annoying so I clipped the tape to my shirt. The beauty of the long skirt was I was able to tuck my feet up under it when I needed to. And if I got hot, I could pull it up.

It is so weird that we all have different chemos. I am doing the UCLA protocol. I guess different oncologists follow different medical university protocols. But it sounds like the major chemo drugs are either Taxotere or Adriamycin, supplemented with other agents. Plus, the different receptors (estrogen, progesterone and Her2 ) factor in. Since I have no estrogen or progesterone receptors, I think my chemo regimen is different, although it sounds like wpmoon is on the same regiment I am with the addition of Perjeta. But as I said, I was barely Her2 positive. Everything in my case was equivocal, which I took to be code for who knows.

My husband paid for me to have this Greek test done called the RGCC, we had to pay $3,000 out of pocket. It tested the tumor cells in my blood against known chemo agents, and also Natural stuff too, like turmeric, etc. turns out both Adriamycin and Taxotere showed the most effectiveness against my tumor cells. So when my oncologist said Taxotere, I was ok with that because either one would work. It did say Cytoxan showed more results than Carboplatin, but the oncologist said Carboplatin is her choice, because she follows the UCLA protocol. Since my tumor has already been removed, this RGCC test was the only thing we could figure out to test if the chemo works. So I will be having it done again after chemo to measure my level of circulating tumor cells. Right now they are measuring at 4.6 per 7.5 ml of blood, and cancer patients typically measure between 5 and 100. I don't know how valuable the test is, but we figured it couldn't hurt.

I have investigated alternative stuff, but that will be looked at more seriously after chemo. I am not taking any chances. I am interested if anybody else is doing any other treatments and why

Awwww Shaz, I totally teared up over your post. I'm glad you were able to drop in on your goddesses, and show 'em how it's done.

Diane- thinking of you. You're going to rock this!

And I managed to get signed up for our local look good feel better in a couple of weeks. And I bought some dangly earrings to go with my daring new look haha.

Passing thee luck o t' Irish to all of my sisters here today. Big hugs for all.

Katy

Bekah, your drilldown is BRILLIANT. I got hit by the fatigue truck the first night and until the esophagus/acid thing on day 4, I was otherwise doing pretty well as far as SEs go. I'll know to take Prilosec at the first sign of gastric problems going forward and I'm over that hump now, even worked yesterday and today. WE CAN DO EET!!!

Hydration is super important. I'm convinced staying hydrated saved me a whole lotta hurting, anyway. While I haven't totally given up my fully leaded coffee (only caffeine I get), I have eliminated it the day before treatment through day 6 (tomorrow). No one told me to do that or especially recommended it that I can recall. It's just an extra measure I'm taking to stay fully hydrated, thought giving up caffeine make that easier.