Starting Chemo March 2016

Moderators

Welcome Mmn and all the other newbies!

WannaCruize

Well, I'm back at home, even stopped for lunch afterwards. Not feeling bad at all so far, and didn't have any allergic reactions at all. The only thing that didn't go so well was getting the stupid IV inserted. It took 2 nurses 4 tries to get it in properly, even after heating pads, dangling the arm, all the usual tricks. I luckily have a followup appointment with my surgeon tomorrow and will be pushing him hard to schedule me for my port install BEFORE my next chemo session.

Jonsey22, thanks for the hint on the Tums, I'll definitely try some. Nurse also suggested OTC Prilosec or similar. Also, I noticed a weight gain too , hoping it goes away when the steroids are done.

Logang, I asked my nurse specifically about Colace, which I had started taking 1 pill at night for the past couple of days. She said it's perfectly fine to take long term, it doesn't cause any sort of dependence issues, just keeps everything moving. She told me even to take 1 in the morning and 1 in the evening, then just supplement it with something else, like Miralax, if I get constipated.

Good luck to everyone, may the infusions be uneventul, and the SE's be manageable.

HolaSandy

hi ladies,

Welcome to all the newcomers and I'm sorry you have to be here.

I just wanted to touch base and thank all of you who have started treatment and are updating us as to how you're doing. I had my egg retrieval yesterday and start chemo Friday. I'm savoring these last couple days of feel like my normal, healthy self. Normally I would be trying to cook supper right now and do dishes while keeping my daughter from climbing on the back of the couch. But instead I'm sitting on the couch, watching my sweet baby girl feed the dog a fruit loop while my guilty pleasure, The Bachelor, plays in the background. Supper can wait 😉.

Anyway, I just wanted to give kudos to you women who are already ankle deep in treatment, it means you are that much closer to finishing this process. I am sending out prayers and positive vibes for healing, strength, and most of all: laughter and fun. This is a total shit situation (or shituation?) and we will get through it!!!

Much love xoxo

HRwinter16

thanks all for sharing support with each other - I'm feeling the positive vibes!

Wannacruize, Tami's picture is beautiful. So gorgeous. Sending love and hugs.

Feeling very achey and weak today. Not awful but not so good.

I have family and friends offering to help, but my daughter is sick of visitors and company and wants it back to "normal". I do too, but I could use a hand sometimes!

I go back to work full time on Monday and pretty nervous about it.

Good luck to all fighting side effects etc. sending love and light

Xo

Heidi

HRwinter16

also: anyone else struggling with restless legs at night

HolaSandy

HRWinter, check with your dr whether it might be ok to take magnesium while doing treatment? It might help with restless legs, as well as constipation of that is a SE that you get

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WannaCruize

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Anyone else have hiccups after chemo? Had my first infusion this morning, and now have had 3-4 separate bouts of hiccups. Not sure if it's related to me really pushing my water intake, but it's sure annoying.

Edit to add: Well Doctor Google came through:

Severe hiccups during chemotherapy: corticosteroids ... - NCBI

by P Gilbar - ‎2009 - ‎Cited by 8 - ‎Related articles

J Oncol Pharm Pract. 2009 Dec;15(4):233-6. doi: 10.1177/1078155209102336. Severe hiccups during chemotherapy: corticosteroids the likely culprit.

Tried a suggestion I found to take a sip of water, lay back and hold breath for 30-60 seconds. So far it worked, but we'll see how long it takes for them to come back.

EllieSurf

Portal was placed Monday, the 7th, easily, skillfully and painlessly. Had my first round (of 4) chemo yesterday. Was first given aloxi and dexamethasone , and then the Cytoxan and Texotere. Have compazine and more dexa to use the next coulple of days. I have also started Claritin as I have a neulasta patch which will deliver the dosage this evening. (The patch is quite amazing and very new innovation. I'm lucky enough to be treated in a local university academic medicine breast center, and the facility and staff are supportive and knowledgeable.) So far, so good, but I do know some bumps can be ahead. Mild headache, which feels like sinuses, is my only symptom. I'm working on keeping hydrated and keeping ahead of constipation. I'm 75 and I'm wondering if senior women might have a somethat easier time with chemo than those younger.

786tex

Anyone else having problems with swallowing? I had my first round of AC last week and the other day swallowing food, water, anything, became very painful.

Melgirl - I also expected it would take a few days to feel bad and it hit me that night.

BKGameGirl

Let's talk about mucus membrane care "down there." I don't have the constipation or diarrhea... but my poor bum. It's very tender and swollen. I'm guessing this is where the rinsing comes into play and is important? I'm going to ask my MO about proactive steps to reduce the swelling and tenderness. I have a hemmorhoid that has now appeared - if I don't deal with this then things are going to get pretty bad pretty fast.

Otherwise, I still have limited SE's. I took a compazine today for what felt like it could have been breakthrough nausea. Tonight I start the miralax + steroids in prep for Week 2, Day 1 tomorrow - Taxol & Carboplatin only this week.

PS: I learned to use eyebrow stencils yesterday...and I don't know how I have lived without them ever. Highly recommend.

Loretta_J

Elliesurf - I am 69 and have been told that older women seem to have less side effects. I had my port put in March 3. Have my first chemo tomorrow. 

Melgirl

Good to have someone to compare AC with 786Tex. But I didn't have any trouble swallowing after the chemo. It was only after my port was placed that I had discomfort with swallowing. This is day 7 out for me and I am still mildly nauseaous. The smell of certain foods, esp meat, makes me sick and I can't eat meat hardly at all.

WannaCruize, the picture of Tami is so beautiful. She looks like she was a happy carefree spirit. Hug to you.

BKGameGirl....please figure this hemmorhoid thing out and pass it along to the rest of us......none of us need a pain in the butt at this point!! ; )

ksusan

The secret treatment for everything is coconut oil. Really.

Italychick

I second what Ksusan said. Rub it on the butt, vagina, head, inside the mouth, on hands, everywhere. The only place it doesn't work for me is on my face for some reason. Any irritated tissue, coconut oil is like magic. I rubbed it in my mouth all during chemo, never got any mouth sores

BKGameGirl

Woo, hooo!!!! I am going to get some coconut oil after chemo tomorrow!!! HOORAY!!! I'll also let y'all know what the MO says.

786tex

BKGamegirl. I had swallowing problems after getting my port in. I think it was from swelling and only lasted a day. This started about 4 days out from the AC. Wish you the best with chemo tomorrow. I got sick about 6 hours after it. It's like a really bad flu only you can't sleep it off because you can't sleep. Take an anti-nausea pill that evening. It worked for me and I didn't throw up at all. Will be thinking good thoughts for you.

azrescue

782tex - Do you know if you were intubated for the port placement? That can definitely cause throat irritation resulting in difficulty breathing.

So, I'm feeling pretty good on day 7. Still not myself but I'm guessing as good as it's gonna get. My biggest complaint the past couple days is this constant tight, squeezing feeling around my chest/upper abdomen.

So anyone know if the remainder treatments will be similar in SE's or will it get harder as I go?

ksusan

My MO said that the response to the first treatment is a good indicator of subsequent treatments, but you're more fatigued each time. My experience was that they were pretty similar, and I only had real fatigue about mid-way through radiation.

WannaCruize

Well, I just gave myself the first of 6 daily injections of the Zarxio (bio-similar to Neupogen). Pretty easy process, into the fat around my belly (which I still have plenty of, unfortunately). I've been taken Claritin for the last couple of days, so hopefully I won't get too much of the bone aches and pains. Also took the last of my steroids this morning, and had lots of energy today. I fear tomorrow I'll be much more tired. We'll see. So far, so good.

Oh, had a re-check with my surgeon today, and requested the port. He's been discussing it with several plastic surgeons, and they all say to wait until about 8 weeks post surgery to go back in and place the port. So, will probably have it installed between Chemo #2 and #3.

NancyHB

Sounds like we're all in the throes of those first-treatment blues. Hopefully we all start to come out on the other side soon. *hugs*

Turns out I *was* dehydrated on Tuesday - wow, that was truly horrific. So I've learned I cannot hydrate nearly enough. It makes me wonder if I was drinking enough even the few days before, so I'm going to drink more than I ever thought possible next time. The taste change makes plain water tough so I'm going to invest in mass quantities of LaCroix and more Gatorade.

My fingers and toes are all feeling pretty good, execpt one corner of my left thumbnail. I'm hoping this means the icing is working. I've been reading on other threads about taking L-Glutemin and B6 supplements to stave off neuropathy - is anyone else doing this?

ksusan, thanks for the tip on coconut oil. Having the same problem with the bum area as BK, not wanting THAT fun to continue! I forgot about having a small squeeze bottle of water to rinse after urinating, instead of wiping; I learned that trick before. It rinses away the residual chemo being expelled, instead of wiping it back into the skin.

MelGirl, the smell thing with AC was one of my worst SEs. Certain smells in particular were so strong I'd have to leave the room - meat, smoke, my DH. Seriously - it was the craziest thing, for the first week or so, only in the morning, I couldn't stand his personal smell (even today, I can't detect any particular odor, just on AC). I used to have to light smelly candles in the morning so we could have coffee together before work. It still makes us laugh.

So here are a couple of things I learned this last week through trial and error, and hope to change up before next treatment:

• More ice in my mouth during Taxotere - still have a few mouth sores, lips were numb yesterday.
• Make sure the icing gloves hit all my fingers and fingertips
• Hydrate, hydrate, HYDRATE!!
• Coconut oil!
• Hydrate a little more...

Thinking of everyone who's getting ready for their next treatment.

NancyHB

Oh, before I forget - someone mentioned a recipe for making ice packets for hands/feet using water beads and alcohol? Wondering how those worked, and if you'd share the recipe here? I'd like to try that next time. Thanks!

BKGameGirl

DIY Ice Packs: Alternative to the more pricey mittens and slippers that also work well. Disclaimer: I own both and have used both!

** I'll come back to add pics after today's infusion (steroids have me UP!)

Assumptions for these instructions: a 1-hour Taxol (or similar) infusion, resulting in the need for about 75 minutes of icing time (set up before + infusion time + 10 minutes afterwards). Adjust your needs as your infusion time requires.

Supplies (sample links will be added below):

1. flexible ice packs. 1 pack lasts a good 20-25 minutes.

3 sets for hands, 3 sets for feet

I bought this comfort cold pack from Amazon because of its flexibility and the various size options. I bought the 6x10" and those will work for my hands and feet. The flexibility was key because I wanted to dig my fingers and toes down into the gel during icing and wrap the gel around the sides of my hands.

Link: Cold Pack Example from Amazon

2. soft, thin cotton gloves; optional

Soft Cotton Gloves from Amazon

3. soft, thin cotton socks (like what you'd wear with a ballet slipper or driving flat); optional. No link - I used some from my sock drawer.

4. soft self-stick exercise tape (re-useable or disposable, fun color or not, your choice)

Self-adhesive Exercise Tape Example

5. Large, stretchy socks or large-mouth adjustable slides

Open-toe Adjustable Slide Example

Approximate investment if all purchased new: less than $100.

Assembly:

Feet:

1. Do feet first for practical reasons (opposable thumbs are handy!) You may need a buddy for the hands piece.

2. Put on your thin sock.

3. Squish toes and feet into gel, and wrap the edge over the tops of your toes and sides of feet.

4. Secure the gel pack to your foot with the self-adhesive tape. Don't go nuts, you need to unwrap and rewrap 1-2 times.

5. Put on the slide or the large sock.

6. Safety: do not walk on the gel packs on a slippery floor. The sock or slide will help but honestly, take a buddy (not just your IV pole) if you have to get up.

7. Switch it out: unwrap and rewrap 1-2 times during infusion as your ice pack cools.

8. Pack it up: reroll the tape if desired; wash socks; refreeze packs for next time.

Hands:

1. Sit down and get comfy now!

2. Put on your thin glove.

3. Squish/lightly grab the gel pack in your palm and wrap it over the tops of your fingers. Put that thumb in there!!

4. Secure the gel pack with the self-adhesive tape.

5. Do the other hand.

6. Practice holding your cup of ice chips and your popsicles to ice your mouth! Have your buddy take a photo because this is awesome!

7. Switch it out: Re-wrap 1-2 times as your pack cools.

8. Pack it up: re-roll or discard tape, wash gloves, wipe packs of sticky popsicle juice, and refreeze for next time.

Let me know if this is helpful.

Melgirl

Nancy that is hysterical about your husband's smell!! I can't get away from my own smell unfortunately!

BK thanks for that recipe. I'm still considering it for next round of chemo.

786tex

azrescue - No intubation, I was actually half awake during the entire procedure. Anyone else wake up with headaches in the middle of the night. This started about 5 days after chemo and is still persisting. Maybe related to something else but I found that I get better answers on this board than from my doctor since we are actually living it.

EllieSurf

LORETTA J: Fingers crossed for you; best wishes; you'll be in my thoughts. This is day 3 post treatment for me, and the mild headache is gone. I tried to keep hydrated and did take a mild laxative yesterday to prevent constipation. (It worked.) My But I am expecting a hair shed or loss down the road, which seems an ok price to pay. Please let me know how you're doing.

Ellie

EllieSurf

Loretta, I replied to you a couple of minutes ago, but I'm not sure it got posted next to your reply to me. Please look for my reply if you have time. Thanks, Ellie

Jonsey22

Yesterday was unusual for me - day 4 after TC treatment 1 of 4. I slept on and off the whole day. Crazy! I couldn't keep my eyes open. I think the constipation finally let up. I need to start Senecot the day before with dexamethasone next time and do 2 pills twice a day till all meds are done. I got behind the ball. Film in mouth, headache, and aches and pains still there but I am vertical today. Hubbie's birthday. Might go pick up ice cream cake. Nothing looks good to eat right now but maybe that. I have sort of sore throat and ears, but really not bad. Feels like I have a headband on that is irritating the top and back of my head. Not terrible, just annoying.

DizzParkMom

Some of you having headaches...it's possible you are experiencing these due to your sudden slam into chemopause. After chemo starts, it's generally not a gradual decline in hormones for most, but rather like hitting a brick wall. Hormonal shift headaches are pretty bad...more like migraines. Good news, the headaches don't seem to linger. Bad news, here come the hot flashes and night sweats.

Jonsey22

DizzParkMom, do you think that it would be that after only 5 days? The headaches are weird. I even drank coffee to see if it was lack of caffeine (I loved coffee until 5 days ago. Now it tastes terrible). That didn't help. They come and go and they are like a head squeezing band. They started with infusion and haven't really left. Behind the eyes too. I have never had a migraine so I don't know what it is like. Tylenol seems to ease them up somewhat though, which is good. I wonder if the muscle fatigue and pain could be hormonal as well. I assumed it was the SE drugs but I am not on anything anymore so it must be either chemo drugs themselves, or hormonal.

ksusan

Also, keep your hydration up! Dehydration can cause headaches and contribute to constipation. I was drinking over 100 oz of water/sugar-free Gatorade a day all though chemo and radiation.