Starting Chemo March 2016

hi MFPM

Couldn't sleep the hospital has me all kinds of thrown off. Made some bedtime tea, took a melatonin, and decided to look up my dosages while waiting to get resleepy. My cytoxan dosage was 1320. So yours is lower then mine by a bit. In the hospital my Oncdoc said he would probably be lowering the dosage. Thing is, other then this whole netroponic thing, I had no other symptoms. Weird!

MFPM, call the dr. No joke. They know whatever you are feeling, they have seen it before. This is their job, let them help you it's why they became Dr's and pharmaciyti begin with. I hope you feel better.

Me, yesterday was day 3 and by the time I got home from the IV fluids they give me just to keep my hydration up, I was wiped. Felt a bit nauseated so I took something extra for that and I think it made my neck hurt really badly. Now I feel like I have the flu, but sort of mild. Still really bad beck pain, wonder what that is about.

First shot of Neulestra last night. No problems from that, took the Claratin and Tylenol as directed too. All good there. Woke up and had some toast and some Kefir. Keeping on!

Mecool - that is a LOT of water! My doc and infusions nurses said 60-80 oz was a good amount. 2 gallons would be like twice that much. Let me know how that goes, would be curious to know.

Hope you all have a wonderful day filled with bird song, sunshine and no SE

Hi Ladies, Thank you ALL so very much.  Not being dramatic but don't even know how I typed last night shaking so bad and knew I needed help of some sort.  I managed to sleep, not much as usual and don't know why but some is better than none.  I realized today also looking up the generic Zofran, Ondansteron HCL, that it causes dizziness, so I didn't take any yet today, figuring that is surely adding to this.  I am still feeling very weak and out of it but more alert.  Does anyone else take this form and think it effects them?  I know it's probably the smallest of problems but when feeling this way, I need to feel centered and not a crying helpless fool.
I'm eating lightly, but feel weak as if I didn't but will try to take a 1/2 pill later as the pharmacy said I could to reassure me that I won't get sick on food.  What I've been looking at too is the the down time for each med, the Cytoxan is 1 week then on, but the Taxofere  begins day 4 and on.  Getting T every week I don't know when I will have a recovery period, but that's how he chose to do it.  As for the dosing of the C, I will ask him in 2 weeks when I go for the blood cell count.  There really isn't a team there, a private office in a house, though I do have an emergency # to call.  I just don't want to jump the gun on every thing which they think may be minor.  I'll keep tabs on the symptoms and my temp.  Today getting a pain in my calf, maybe from not walking much and had pains in my head at times.  Horrible and know it could be worse, though very much feeling for every one of you.  I'm trying to keep moving, not going out but not staying upstairs in bed, dragging around down here and hoping that tonight will not turn worse.  Yes, I keep thinking about this poison that's in me and how sad it is that treatment is so primitive but we have to do what is available for our own good.  Thank you all so very much and sorry if I haven't been much of a help to anyone YET, but am here!  Marilyn
P.S. ~ Does everyone here continue to pre medicate for nausea and for how long?  IF I didn't think they were adding to it, I wanted to continue taking them to be on the safe side, afraid to eat a real meal.  Just curious!

Hello everyone, I'm going to respond to general symptoms.

Bloating, check, part of the treatment, mainly steroid induced I think. Took a few months after final chemo to go away. So the bloating is normal. Still fatter, up 13 pounds, down from a 20 pound weight gain. Make sure oncologist checks magnesium and potassium levels because chemo hammers those, and having them low can contribute to swelling and cramping. I take magnesium all the time, 500-1,000 mg a day. Normally don't need potassium, but during chemo mine tanked and I had to go on horse pills for a week. Drinking lots of water without balancing electrolytes can lead to feeling crappier. I drank smart water which had electrolytes added. Gatorade is also recommended, but I couldn't drink it because it tastes like sweat to me. If you drink too much water without paying attention to electrolyte balance (magnesium and potassium) you can end up feeling worse

Food textures, check. Mashed potatoes were the bomb, but probably contributed to my weight gain. Oh well. Coffee tasted burnt, but I drank it anyways, who knows why. Mouth felt like it had a burnt scum on it. I used a tongue scraper and coconut oil to minimize the length of feeling that way. Usually about 5-7 days after a chemo infusion I could get my mouth back feeling mostly normal.

Nausea, never really had any, but I made sure to eat small dibs and dabs of soothing food every few hours, like mashed potatoes, cookies (ok, well that was probably for comfort), kefir, yogurt, chicken broth. Something about salty chicken broth was amazing, with sea salt. Oncologist said they give enough nausea meds on infusion day to carry through for 3 days or something like that. So first time I took them, felt like crap, and rolled the dice after round 2. Never needed them after that. Oncologist gave me Zofran and compazine and warned me Zofran can cause headaches. If those two substances don't work, there is also the Sancuso patch, but I think you have to fail Zofran and compazine first.

I forgot about electrolytes! I'm drinking a bottle of smart water right now.

Hi all -

Today marks a year from when I had my double mastectomy for bilateral breast cancer. It is hard to believe it has been a year already! I am so sorry you all are going through the chemo like I did, and some recovering from surgery and others awaiting it. This disease sucks so bad!

The side effects are so nasty. I was told to go to the ER for any temp over 101 (I think...but it was Celsius since I'm in Canada). I did a couple of times, and had bloodwork done. I was kept overnight just once, for a very low potassium level (I had diarrhea)...so I was given IV potassium. My white count was always fine, thanks to Neulasta. Do not be afraid of going to the ER. If there is anything that you worry about to the point that you can't relax, get it checked out! You need your rest and to decrease stress as much as possible.

I always found that days 3 and 4 after receiving chemo were the worst. I had no energy and just felt plain awful. The mouth sores were bad too, but not as bad as with some people. Those might last two weeks. But for the most part I was feeling almost normal a week to ten days after each chemo.

For those concerned about neuropathy and fingernails/toenails, not everyone is affected. My nails were fine, probably because they were iced. I have had no neuropathy either.

Good luck to you all.

Andrea

teaner16, Are you taking magnesium? It helps with my 'normal' leg cramping. I cut out all of my supplements for about 10 days. You've reminded me to go back on it! Sure sounded like some very painful cramping

Today is a bit better than yesterday. Day #4 after first TCHP. Still have bad taste in my mouth, drinking something constantly helps with that. I had my husband go out and stick up on Perrier and juice, mix them in a variety of flavored, keeps it interesting. I too have zero taste for sugar. Actually ate a pice of Easter candy today and had to spit it out! Gross!!! Maybe an upside? No more sugar cravings will be good for my waste line! I'm all about seeing the up side of cancer.

My kids have been amazing! They just let me rest when I need to, but they are getting a but stir crazy. Hopefully school will help with that, I am not winning any mommy awards at the moment with my un-fun self!

I think I'll try mashed potatoes given the rave reviews as food is just not appealing right now. Happy Easter

Tomorrow is my day! I'm feeling ready to rock this....have my log book ready and I'm going to write everything down, from how I premedicate to every body sensation. Here are my questions for those of you that have some infusions under your belts 1. What do I wear? Haha! I imagine I want to be comfortable....so yoga pants? And a shirt that my port is easily accessed. Do you all get cold? Should I wear a hoodie?

And 2. What should I eat, if anything for breakfast before? My infusion starts at 9:30. Should I bother eating anything first or just begin hydrating and wait to see how I feel afterward?

Mecool - I hope you get this before you go! By all means, eat breakfast. Keep hydrating but eat something that you're pretty sure won't upset your stomach. I'm not on AC, only Taxol, but I eat normally before and after chemo, just smaller amounts more often. If you're there for a long time, you might want to eat a bar or piece of fruit or something while your there. For Chemo #1, I was there for 4.5 hours and was STARVING afterwards. Eat small and frequent. Did you get a tube of lidocaine cream to put some on your port to numb the skin there? You'd put that on 30-60 min before you start. If you don't have any, ask for a prescription. It's better than the ice spray they may use. What to wear? I am coming from work, so I just wear my semi-casual work clothes. Yoga pants sound divine though. Wear a shirt that will let them access the port. Quarter zips are great, but I've even just worn a v-neck sweater. My center has blankets and pillows for us. For Chemo #1 I was too nervous to sleep, so I wrote in my log book, tried to read a book (couldn't concentrate), and listened to shuffled up music on my iPod. For subsequent weeks (tomorrow is Chemo #5 of 12), I slept about 1.5 hours out of the 3.5 that I'm there -- gotta get sleep when we can while we're on the crappy steroid. Also, every week I have the nurse take my picture on my iPhone (do I sound like an ad for Apple now?) while I'm hooked up to a chemo bag and I text it to my kids, sisters, nieces, and best girlfriends with some funny comment -- often about how sexy I must look. It engages them while I'm there and it makes me feel connected and warm. Last week I was listening to my iPod and a favorite old song from high school came on and I texted "Song of the week. Here is a hint (insert short lyric here). Whoever guesses the song gets a prize." Well, this game went on for a good 30 minutes! Everybody participated and everybody laughed! May try it again tomorrow - now I think they're expecting it. Oh, the prize was "1 mieeeeeellion dollars." Could start a new "guess the movie" game with that line.

Hugs to you all!

Hi Mecool. I like to be comfortable so I wear exactly what you suggested, yoga pants and a top that keeps my port easily accessible. I do get chilly and I like to bring a special blanket. We are on the same chemo but everyone has different side effects. I find I need a good breakfast because I get nauseated about an hour or so after the infusion. My nausea was somewhat improved last time by adding steroids.

I hope it goes well for you with few SEs.

Melissa

Today, I have an chemo orientation with MO and tomorrow they will install a port. I am still hesitant about the port but it was recommended to me by the nurse since last time it took 3 nurses to find a good vein! I will start my first TC treatment (TC x 4 treatments) this Wednesday March 30th. I am bit anxious but trying to keep it positive. I read the valuable tips of getting through chemo and will be shopping today for all the most have. Not sure when I will loose my hair so I can schedule the buzz cut. Thank you!