Starting Chemo March 2016

Italychick

Boy, I am an idiot about fasting, but here is a link and my understanding. It is a very small study, but I'm sure there are more out there. Cancer cells need fuel, even more so than normal cells. Fasting 24 hours before and after chemo enhances the effect of chemo, since the cancer cells are starved during this period and weakened. Normal cells seem to form a protective coating when fasting which enables them to better handle chemo. Also, side effects seem to be impacted in a positive way. I never tried fasting, I like to eat too much, but there are trials ongoing related to fasting to improve the effect of chemo and help reduce side effects.

Remember, I am an idiot when it comes to fasting, but do some research. There is some data out there.

http://bmccancer.biomedcentral.com/articles/10.118...

I got the Biotene spray on Amazon I think.

Cin54

Received first infusion today. Felt pretty good afterwards with a slight headache and tired. I ate, I napped, had my spouse wake me every hour in order to drink water and took compaxine just to stay ahead of the nausea. Some slight nausea in the background along with what feels like a caffeine hangover (tired mania). Ate some butternut squash/apple soup and a snack of a hard boiled egg and an Ensure high protein. Water, water everywhere! Headache is back and I can identify it as the "oh s_ _ _, I coming down with something" headache. More water, some Gosling's Diet Ginger Beer. Dry eyes.

Its spring in Connecticut. A bit chilly and drizzly day. I took my dog outside and put my face to the sky. The rain felt great. There are crocuses and snowdrops blooming.

If you folks can carry on, so can I. Thank you.

Anonymous

Jonsey - I'm in the Feb 2016 group and plan on fasting for my AC treatments (my oncologist is OK with it). The research is in its early stages, but the reasons I'm fasting are that the side effects of chemo may be reduced and that the chemo may be more effective.

My plan is to fast (water or black coffee) for 72 hours before chemo, and 24 hours after the treatment ends. Anything over 50 kcals will break a fast. My first treatment was delayed for a few days after I had already fasted for 3 days, so I could only fast for 1 day before and then 1 day after. I had minimal side effects and did not need to take all the prescribed drugs at home.

I was already able to fast for 24 hours easily due to a fairly low carb diet, but I did practice to make sure I could fast for 3 days. It is not easy to suddenly fast even without chemo. You also have to be careful once you start eating.

Here's an article on it:

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

Here's a series of case studies of 10 patients who fasted for some or all treatments:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048045/

I haven't decided what I'll do during the weekly Taxol treatments, but after all the treatments are done, I plan on doing 3 or 5-day fasts periodically for prevention. Don't get me wrong. I love to eat, but I no longer feel the need to eat all the time. Plus, you tend to appreciate better quality food. I will only eat pastries from an excellent bakery or if I make it.

Probably more than you wanted to know

azrescue

So what does happen if you get a fever over 100.5?

This past Friday, I had a sore throat and was at 99.3. So I called my MO just to be on the safe side. They wanted me to immediately go see my primary care dr. and have a strep test and a CBC.

I did that and as I'd expected the strep was negative & they called today with my blood results (my WBC was just barely under normal). So, all was good.

However, now both of my kids are sick ... my little one has sore throat & a higher fever (101.4 - gave her Tylenol) and my son 99.6. I'm SO nervous of getting sick. So, what do they do if I get a fever? Do

they just prescribe an antibiotic? I've been washing my hands like a crazy person today & I bought some surgical masks. Hope it's helping.

Mamalala333

I start chemo a week from today (Monday, March 21.) I get my port surgery on Thursday and have a bunch of other tests this week. I cut and donated about 10 inches of my hair and now it's very short. I bought two wigs. I also have gotten just about everything from the chemo list. The way I have dealt with all of this is through preparation!

My chemo cocktail is A/C for 4 rounds every 2 weeks followed by Taxol every week for 12 rounds. Lower doses of all, according to the doc, although I didn't get percentages of what my dose is based on what the "normal" dose would be. I can ask that on Monday, I guess.

I have 5 kids ages 4 to 13 and have had various reactions from all of them. Like Melgirl, I have also had problems with my kids getting bullied at school. I told the principal I had breast cancer and she needed to fix the problem because I couldn't deal with my kids having one more thing to stress them out. I got tons of teachers involved and also contacted the parent of the bully. Bullying has stopped, at least for now. Boy was bullying two of my kids.

My kids hate my short haircut but like my wigs, so I guess they'll be happy in a few weeks when I'm wearing my wigs more full time. I have fine hair that is prone to thinning anyway, so I'm thinking it will fall out around that first 2 weeks after chemo.

Ready to fight this

Jonsey22

Thanks for all the info on fasting. I wasn't aware of that as a tool for helping.

Good luck today ladies!

Welcome to new people to the thread.

ksusan

If you get a higher fever, you might be admitted for IV antibiotics. With lowered WBC, one is more easily endangered (as opposed to inconvenienced).

BKGameGirl

Day 5 here after weekly infusion #2 (16 to go!) I had Taxol and Carboplatin only this past week.

Feeling fine- Monday I had post-steroid crash/blues but no real complaints. Ha, mother nature sent me my period on Day 23 of my cycle, I guess this is the last one for a while.

I definitely have a sensitive lower GI but it's not getting worse or making me sad. It's manageable with the current toolkit. I'm going to write down ItalyChick's list of various supplements and take to discuss with my MO on Friday.

Herceptin and Perjeta are quite possibly amazing...I can't feel my swollen under arm lymph node anymore and can't seem to find my breast tumor anymore by touch. I feel like there's a revolution going on inside my body.

Here's to powerful miracles in all of our bodies today!!

HRwinter16

BKGamegirl - I got my period a few days ago too and was surprised; I thought chemo was suppose to make it stop. Then I worried the chemo wasn't working!

Really interesting about the fasting and how it makes chemo more effective. Not sure i have the energy for fasting.. We'll see ;

Suchick

I have my first chemo tomorrow (TC-4 rounds)...any tips? Should I eat a normal breakfast and lunch? I bought some coconut water to drink in the morning. I have seen the suggested shopping list as well.

DizzParkMom

Day 9 of my first A/C infusion last April, I developed a 100.5 and then higher fever. Care Management had me immediately go into my pcp for evaluation. I was miserable by the time we got in with the higher fever and chills. My pcp sent me for bloodwork and ordered me to take a huge dosage of Motrin. Fever dipped a little in the afternoon, but then rose again higher than before. We were sent to the Emergency Room. I was told by care management that if they didn't take me immediately to a private room that I should wait in my car while someone else waiting in the waiting room for me. Here is AZ that isn't possible. So, I wore a mask and sat in a less crowded corner of the ER. Eventually I was taken back to a private exam room, sent for chest x-ray, and then they took 2 billion gallons (seemed like it) of blood to run blood panels and cultures. Panels showed that I had neutropenia. My body had zero of an immune system. The defensive walls were down and there was 'no one' on duty to protect me from infection. At the time they didn't know if I had already contracted an infection or not. I was admitted and spent 4 nights in the hospital in isolation. I was also given additional neupogen in addition to the neulasta I had already had. Once I was cleared by the infectious diseases doctor, the cultures were clear, and my wbc began to improve, I was released from the hospital. Important to note that this is really rare, but does happen. That's why the doctors make a big stink about the 100.5 temperature.

Italychick

Anecdotally, several of us felt tingling and stuff going on around our tumor bed during chemo. Zap those little suckers and kill any cells left behind

Cin54

Suchick

I had my first infusion yesterday. A friend said her father (everybody has a special trick they know someone used) drank a small can of warm ginger ale prior to having chemo. So I did. I'm not a breakfast person. About halfway through the treatment I demolished a bag of cheddar goldfish and a bottle of Powerade Zero. So, my intent is to eat light, bring snacks, drink liquids and have a healthy treat afterwards. Good luck tomorrow!

Seashine

this is a beautiful post! Thank you for your grace

Seashine

I have my first chemo next Wednesday of TCHP. I have not told my kids yet. They are 10 and 6. Any tips there? Not going to work, MO says I can't since I work in a k-8 school, too many germs! Thinking of shaving my head. Don't think I can stand to watch my curls fall out. Anyone else shave it all off after chemo started. The nurse said I should do it before I start if I'm going to, just because the head can get sensative. But I don't think I have time, think I can do it in the three weeks between treatments #1 and #2 before myhair starts to fall out too much?

So fearful of SE, but reading these posts helps a lot. Everyone is different is my current mantra. Be prepared for everything and take it as it comes! Right?

Jonsey22

Picked up my wig! Shaved the hair down to 1/4 inch. Yikes!

Logang

Jonesy: I love the wig!

Seashine: I chose to cut my long hair into a short style. When it starts to fall out, I will shave it to around a 1/4 " like Jonesy did. I already got fitted for and ordered my wig last week. As for your kids.... My boys are older at 14 and 18, but we have always been upfront with them. We told them that I had cancer and needed surgery and then chemo. I guess it depends on how you think your kids I'll react and it's up to you to determine how much you want to hare with them. I should you luck. This is a great lace for support and I'm sure others will chime in!

HRwinter16

I LOVE it Candy!!!

Seashine:

I don't think you *have* to shave your head prior, I think some people prefer to do it that way but it's ok to do what feels right for you. I got a short cut and also plan to wait on the shaving until day 14 or so after first treatment. I'm now at day 8.

As for telling the kids, I was very nervous about telling my daughter but emphasized the positive aspects and how I felt my doctors were taking good care of me to get better. My surgery kept me in the hospital three days and seeing me with the IV and oxygen tubes freaked her out but once I was more like myself and at home again she felt better. I am fortunate that lots of friends and family gave her extra TLC during this time.

Maybe they can help you pack your bag of things to take with you to chemo (I call it a special medicine to help get rid of cancer), like some lollipops for dry mouth (they can share obviously) and maybe if the little one is still in to small toys or stuffed animals they'll let you "borrow" one for your bag to bring to chemo. -- whatever/ however you choose to talk with them, sending lots and LOTS of love and light your way. You can do this!

Kudos to everyone for being so brave and also for sharing this safe and supportive space with others. Xo

Heidi

phaila

starting on Thursday. When exactly am I supposed to take the 2 steroid pills the day before? Afternoon? Night? And am I supposed to wait to take anti nausea pills night before or wait???

Ps. Shitting bricks I'm so scared:((

Jonsey22

Just thought I would add that as far as shaving, do it when you feel you want to. I decided to do it today (day 8). I wanted to own it and didn't want to experience clumps of hair coming out. Now I can just rub it off in the shower or with a lint roller when it starts to fall out. My boys said huh, it doesn't look that bad. They are 13 and 17 though. My youngest said I look like Helen Keller. I don't get it still but whatever floats his boat.

Jonsey22

Phaila, I don't know if your medication is the same as mine, but I was told to take 2 dexamethosone with breakfast and afternoon snack. They suggested I not take at dinner because of sleeplessness. This was to be taken (in your case) We'd, Thurs, Fri. (The day before, of, and after chemo). The Antinauseant was to be started the evening after chemo (because they gave me 2 pills at chemo). Are the instructions on the box/bottle?

Just breathe, it wasn't as bad as I imagined. You can do this! You are stronger than you know.

Candy

phaila

hi candy,

Thank you...

I got my port put in today. It hurts so bad. It was supposed to be a quick surgery but my husband said I was in for 1 1/2 hours. I'm wondering if they messed up on me and won't tell unless I ask. It is VERY sore. Adding that to all the other cancer crap isn't helping. Plus my puppy figured out how to jump on bed and couch tonight and seems to go right for my shoulder every time, grrrrr

Vicki

Ps. My order sheet says to take the steroids at nighttime. Am I totally going to be awake ALL NIGHT because of that?

Jonsey22

Hi Vicki,

Beautiful family! I found the dex made it hard to sleep. I guess you will see. I wasn't tired though the next day. I didn't really crash until steroids were done.

Candy

HolaSandy

Candy! Your wig looks ah-may-zing! Absolutely gorgeous!!

Vicki, my port insertion hurt afterward, more due to the pressure dressing, I believe than anything. I was constantly checking my circulation in that hand and uncomfortable. Once the pressure dressing came off (24 hrs after surgery) it was such a relief. And I got some shoulder blade pain afterwards as well. If there was a medical error during your procedure, they are lawfully obligated to share this info with you without your having to ask. Sometimes these things take longer with one person than another. I believe mine took about an hour. Maybe slightly more. And yes, dogs (and in my case, dog and toddler) do seem to end up aiming right for these sore spots, but hopefully you heal quickly and it will soon be a non-issue.

Regarding the steroid, I am on a different chemo regimen than I think everyone on here but I didn't take dex until day of infusion and then for 3 days after (today is my first day without). I was taking with breakfast and supper and on average slept about 5 hours per night before waking and then falling back to sleep about an hour later. I was also told that I could take it in afternoon rather than supper to avoid sleeping issues. I will likely try that with my next infusion. You still have a couple days until your first right? Please give your cancer clinic a call and talk to your nurse, she can clarify the order for you so you can make sure you've got it right. Controlling the SEs as best you can during this time will make a big difference in the quality of your days! Scared is totally normal but you have so much support here! Take care

azrescue

Candy, the wig is great! Very pretty.

Vicki, my port insertion was painful too. Most of my pain was in my shoulder blade. The only thing that helped ease it was a heating pad. I've just noticed in the past couple days that I don't notice it so much & am back to normal activity. Sorry you are going through this too. As for the length of time your surgery took it is possible that you took a bit longer to come around from the meds they used.

phaila

aww candy your hair is adorable! I could NEVER get away with that. My head is shaped like Max Headrooms. It's like total square massive box. That's why we are trying penguin caps. Pleassseeeee let them work. Also me in a wig or makeup- I totally look like a tranny hooker. For reals!

2:30 am and puppy is, once again, trying to jump up on my port side. It is so painful

😜😬🙁

ELrunner2

Hi, I started my chemo March 2nd. I have my 3rd one tomorrow, March 16th. I go every week once a week for 12 weeks total and am on Taxol and Herceptin.

ELrunner2

Hi Phaila,

My port was put in during my lumpectomy and was the thing that hurt the most compared to the lumpectomy. It's been in since January 22nd now and is much better, but it took me awhile to not feel sore. My muscles in that area do not like it still. They get achy sometimes. I am a runner though and so when I run it moves slightly too. This doesn't help because it can feel tender or achy after running. It does get better though. I iced it a lot after surgery. I also massaged (gently) the area around it. That helped a lot too. Ice was my best friend for a week after though. Also, the part that bothered me the most was where it goes over my collar bone and into the vein. The actual port itself wasn't as painful as that collar bone area. I also put Arnica Gel on the area around the port which also helped with swelling and pain. You can get that at Target. It's called Arnicare Gel at Target.

Good luck!

Suchick

Cin54

Thanks for the tips...hoping you are doing well after your first round! Hugs

Logang

So, today is day 6 for me. I started noticing yesterday that I want to eat everything! I only got a dose of steroids on the day of infusion. Anyone else notice this sudden urge to eat nonstop? Maybe I'm making up for lost time. I didn't have much of an appetite the first few days.