Jul 22, 2019 09:03AM Fairydragonfly wrote:
Man, when your head hair starts to really fall out, it goes into overdrive...
Regimens, side effects, and support from others going through chemo.
Posted on: Jul 5, 2019 12:41AM
I think it’s time to start a July Chemo thread.. who’s on board?
I having my port put in on July 23rd and chemo on July 24th.
I will be having Taxotere, carboplatin AUC 6, Herceptin and Perjeta for 9 treatments every 3 weeks before surgery.
Good luck to all
Posts 151 - 180 (289 total)
Jul 22, 2019 09:03AM Fairydragonfly wrote:
Man, when your head hair starts to really fall out, it goes into overdrive...
Jul 23, 2019 04:50AM jjpope1 wrote:
I just would like to say I could cut somebody 🤬🤬 2-3 hrs they say BS. 1st treatment I didn’t get out of there till 5:10. Today sitting here, more sitting, a lil more so I finally say how much longer is this going to take. They have been waiting on the lab (done at 10:30) for my results to start the cyclophosphamide. I’m sorry WHAT? So how many times has anybody called to see what’s going on? So now I have a extra hour for that then fluid. I told them I would volunteer at the lab since I sit here and do nothing so they can be more productive.
My MO suggested we do fluid with meds Weds and Fri to see if that cuts down the SE’s. Also do phenegan then 30 mins after zofran. So hopefully that will help kill the nausea and headaches.
Jul 23, 2019 08:40AM CancerDefeated wrote:
Maybe you should talk to your doctor to change Taxotere to Taxol. There is a law suit against Taxotere for causing permanent hair loss. Taxol functions the same as Taxotere but won’t cause permanent hair loss. I was treated with Taxol once a week for 12 weeks together with other drugs. I am triple positive stage 2
Jul 23, 2019 10:23AM Alden722 wrote:
Margun: I am having a bilateral mastectomy tomorrow with tissue expanders and sentinel node biopsy, my treatment will be determined depending on what they find after surgery. Praying that they don't recommend radiation.
I am younger than average, which is hard because a lot of the research is geared towards older patients (the majority of breast cancer patients). So when I asked questions about studies my doctors told me that just based on my age that they wouldn't recommend those treatments. So I get treated aggressively because I have a longer time period for things to relapse. Thankfully I had already made the decision to be done having kids. There are many younger who haven't even gotten there yet. I was mad for a time, but it didn't help anything. I have chosen to make the best of things. Life goes on. I hope you are doing well!
Jul 23, 2019 10:46AM 2019whatayear wrote:
Rubydream how is your chest? I hope the heaviness went away.
Alden thanks for sharing your experience and coming on to cheer us on- I hope your BMX is a walk in the park and you can skip the rads!
jjpope i think basically I add on like 2 hours to whatever they say as far as how long something will take. :-)
I hope everyone is having a good Monday.
As far as I am concerned everyone can feel free to TMI their hearts out when talking about this experience- it's all good information and bodies are weird :-D
Jul 23, 2019 11:34AM dvhmouse wrote:
How are other folks doing with their recent port placement? I’m still having all kinds of problems, including an allergy to the chlorhexadine antibacterial they use to clean the port site. It’s frustrating because I hoped the port would be one of the easier things about this process.
The neuropathy kicked in full tilt today right after treatment (Taxol only). I feel like I have a sunburn all over. Everywhere something touches my skin it prickles and my hands are tingling constantly. I’m using the ice on both hands and feet, but it doesn’t seem to be working on my hands quite as well. I think I need to ice them longer. No hair loss yet (maybe with Taxol it will be longer before it starts?). Bloodwork has started to show drops in both red and white blood cell counts, too, rats!
On a more positive note, my parents are coming to visit for a couple of days Sunday and Monday, so my Mom is coming in with me for my next treatment which is the long one with T+H+P. It will be nice to have her around! My Dad faints around needles and blood, so he’ll be cruising the bookstores instead. 😋
Two of my best friends are planning a girls’ weekend for me, I just don’t know what to tell them about when to plan it. After chemo? After surgery? Any thoughts?
Jjpope1 - like you I’m there for at least three hours, even on the day with only one medication - grr. Glad I’m not trying to get to work on that day!
I hope you all are getting by okay today and for those of you that got treatments last week, you are starting to feel better today!
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Jul 23, 2019 10:12PM ucfknights wrote:
my mom finishes taxol today. She ended up with no neuropathy— she took vitamin B supplements, L-caritine and alpha lipoic acid and iced the entire pre Med and chemo infusions (about 2ish hours)
Jul 23, 2019 10:51PM jjpope1 wrote:
GOOD TUESDAY MORNING ☀️☀️☀️
So with changing my meds to phenegan every 6 hours and taking Zofran 30 mins after phenegan has helped ALOT!! Also when they were giving the last chemo my eyes started hurting so I asked to have toradol added to my drip. I suffer from migraines pre chemo and now it’s sending them into orbit. So that’s helped out so much. My 1st treatment and SE’s are so much different than my 2nd one. Glory to God. And I am wondering if my acupuncture has played a big part in this? My face isn’t bright red and hot already, and I’m tired but I’m able to function and I’m at work 🙌🏼🙌🏼🙌🏼
The port question my did well, was sore after but I’ve done good with it. I hate you’re having such a hard time 😩😩
I hope each of your treatments this week are easier than expected and much love and prayers 💕💕
Jul 24, 2019 11:45AM 2019whatayear wrote:
dvhmouse, I too can't have the chorahexadine! They used bentadine (sp) for my port placment b/c I had a reaction to chorahexadine when they did my BMX.
Tomorrow is my 1st A/C I guess I am as ready as I will ever be.
Jul 24, 2019 12:27PM dvhmouse wrote:
jjpope1 - I’m so happy to hear that they adjusted your meds and you’re doing better! I had persistent migraines for the last 10 years or so, but since I started on Ajovy, they’ve pretty much disappeared. I’m glad not to have to worry about that.
Victoria - Good luck with your first round. I’ll be wishing you an easy time of it and a kind nurse. I’m also allergic to betadine which they used on me for my port placement even though it’s marked in my chart.
Welcome mommasusie, so sorry you need to be here but you’ll find lots of help and support here
Jul 24, 2019 05:12PM - edited Jul 24, 2019 07:50PM by starr42
HI Everyone! My 1st AC was on Monday. The experience was actually a bit relaxing. The oncology nurse was AMAZING & honest with me about how these first 4 rounds are "gonna suck". We got there around 9:45am & left @ 1:30pm. Instead of a numbing cream, I decided to ice the port. That totally worked when the needle punctured the port site. The icing only took 5 mins compared to the 45 minutes for the numbing cream. I was given zofran & a steroid as premeds. About 30 minutes later, the nurse gave the adriamycin with a slow push & then the cytoxin through a drip. I got very sleepy with the cytoxin & my sinuses had a lot of pressure so the nurse slowed the flow. I was sent home with zofran & zyprexa for nausea & zarxio shots for rebuilding the blood cells. All I did was rest & sleep the entire day. I had a bad headache & my body felt heavy. I ate very light & drank lots of water when I was awake.
Day 2: I woke up at 4am & was having trouble going back sleep so I used an app called Insight Timer that has lots of relaxing fall asleep music on it. I highly recommend it! I still had a headache so my husband called the nurse line & apparently Zofran causes headaches so the dr. switched me to phenergran & told me to take 650mg of Tylenol. Advil messes with your blood count so that's a big no-no. I was tired all day but overall day 2 was a good day. I ate almost normally with small meals & drank tons of fluids.
Day 3: I woke up at 2am & vomited for the 1st time & took my phenergan.That's why I'm posting so early in the morning. I have thrown up 4 times this morning & I wil be calling the nurse line at 8am.
I noticed my nose hairs are starting to fall out. Fairydragon: I'll be rocking the Brazilian too soon! That totally cracked me up by the way . I, too, try to find the positive in everything. I've been keeping a grateful journal & will go to see a therapist next week.
dvhmouse: my port is doing great. I got lucky. I'm sorry you're having such a hard time with yours. I hope the doctors are listening to you & have ideas on how to fix it.
I can't really give advice on the girl's weekend because I am in the same boat. I'm taking everything day by day & I'm still not comfortable committing to things until I get through these 1st 2 weeks. I think having something to look forward to is best thing ever! I've been told not to put your life on hold for this disease but I am doing the best I can.
Victoria: good luck with your first dose! I hope it goes smooth & your nurse is awesome!
jjpope1: I'm so happy your SEs are under under control! It's so awesome you were able to go to work. I hope I can get to work soon too. I have the option to telework but so far I can't because of the fatique. Maybe Thursday!
Mommasusie3: So sorry you are going through this but happy you are here. This website is amazing & everyone is so supportive. I have learned a lot.
ucfknights: congrats on your mom's last taxol! Good to know what helped her through it.
Alden722: good luck with surgery today! I had a mastectomy with a spacer on my right side. Pillows resting your arms & wedge pillow helped me rest more comfortably. Rest as much as your body tells you & do your excercises so you don't lose range of motion in your arms. Get clearance from the surgeon 1st. I also got a shower shirt from Amazon which made it possible to shower. You will still need help though. The shirt isn't perfect because when you wash your hair & raise your head, water still got inside the shirt. My bandages stayed dry when I kept my head down or rang out my hair then put a towel on my head.
Best of luck to everyone! I hope you all have a great Wednesday & may your SEs be minimal.
Jul 24, 2019 07:59PM Flnana2 wrote:
I had my port put in yesterday. A bit sore last night but feels better this morning. I am headed to my first treatment today...a bit scared of the unknown but going with a positive attitude and will be taking it day by day.
Star42-thanks for the tip on numbing the port site with ice. I think I’ll try that. Anything to get out quicker!
Ucf knights-so glad your mom is through. Do you live in the Orlando area? I’m doing treatments in Winter Park. Did your mom go there?
Victoria, I’ll be thinking of you today as we both start the chemo part of this journey 🙏
Fairydragonfly, your hairs are coming fast but also right on schedule. I’ve noticed many, many people losing hair on the 15th-16th day. August 7-8 I’ll be ready!
Jjpope, I’m so glad you found something to help. Dealing with migraines adds a whole other element to the side effects..good luck!
Welcome mommasusie! I hope the best for you in the coming days and that you find strength and support with our group.
Good luck to all keeping SEs to a minimum. Remember to try to get out for just a small walk if you can. The fresh air is always a good thing. Be 💪
Jul 24, 2019 10:02PM britgirls wrote:
Good morning to all!
I had my second round of AC yesterday. We waited in the waiting room for an hour before even being seen which had my husband getting really cranky. I preferred the nurse I had last time. This one was hanging stuff without explaining what it was. I'm a nurse myself so I guess I'm always keeping a beady eye on them and silently making observations (okay, I'm totally judging them!).
Same as last time, got home and nausea kicked in a few hours later. This time I was taking Zofran q8 hrs and Compazine (prochlorperazine) q6. I took to my bed and watched Stranger Things (so gooood!). The nausea lasted until 1 a.m. (longer than last time). I haven't thrown up yet, so I'm grateful for small mercies. I feel good today and will definitely get out with my kids and walk the dog.
Hiya, momasuzie3! Wishing you all the best with your treatments!
Jul 25, 2019 03:28AM Fairydragonfly wrote:
Hi everyone. Next TC is this Friday for me.
I took control and went to a barber shop today. So sick of hair all over everything.
Pre-Cancer, my hair was shoulder length. When chemo became official, I cut it short.
Jul 25, 2019 09:52AM britgirls wrote:
Good for you, Fairydragonfly, for taking control of it. Looking good and must be feeling cool! My husband is balding and shaves his head. I'll have him take the clippers to me when the first hairs start coming out.
Jul 25, 2019 10:10AM 2019whatayear wrote:
fairydragonfly you look great without hair - it really highlights your eyes !!!
Jul 25, 2019 10:38AM starr42 wrote:
Way to rock the bald, Fairydragon!
I definitely jinxed myself because I have been nauseous & threw up quite a bit today.
I hope tomorrow is easier.
Have a great night everyone. I hope you all rest well.
Jul 25, 2019 11:59AM Fairydragonfly wrote:
Thanks all. 😘
Jul 25, 2019 08:50PM Flnana2 wrote:
I finished my first round of TCHP yesterday. I really liked my nurse which helped. I was there 7 1/2 hours but next time they said it would be closer to 5 hours, hopefully. Lots of patient education and running a couple of drugs slower the first time looking for reactions. No reactions so far 🤞 I’ve had a good nights rest and feel pretty normal today. Heading out for a walk soon before the sun gets too hot
Fairydragonfly, I love the new you. You look great! I’m counting the days. Unfortunately, I found out my insurance (B.C./BS) is denying any coverage for a wig. I didn’t expect full coverage but some would be helpful. Has anyone been able to get B.C. coverage for their wig?
Starr42-I hope you are feeling better and that the other meds didn’t give you a headache.
Britgirls, I was given the same combination for nausea. Do you alter between the two? Meaning do you take one and 6-8 hours later take the other? That’s what my nurse said to do.
2019-how did your first treatment go? Wishing you few to no SE’s
Jul 25, 2019 10:47PM 2019whatayear wrote:
Finana2- 1. call the American Cancer Society you can visit a local wig bank and they will hook you up with a wig and if you don't find something there or if there isn't a local to you location they can give you a coupon code to use on their TLC website for a wig. No insurance, no fees. 1-800-227-2345.
My time yesterday was long 11-5 but like you said patient education, lots of verifying info and going slow because it was the first time. Everyone was very competent. My MO stopped into check on me. I felt good until 10:48 last night -that's when I woke up with a terrible headache. Ugh it's from that Zofran, I also would say I have just under control nausea. I have taken some tylenol but it's just taking the edge of the headache. I only happen to have reg. strength tylenol on hand which is 225 milligrams per capsule. I need to go get xtra strengh. Today I have go back for the Neulesta, so I'll tell them about my headache.
I fell like I did on occassion when I was young and dumb (or less often when I have been old enough to know better) like I have a hangover.
The Breast Center gave me a chemo bag which was nice. I have it ready to go for the next treatment. There is a nice little crocheted lap blanket which will come in handy.
dvhmouse, hows the port doing? My nurse yesterday said mine was looking good for a week out from it being done but the area was still swollen.
I hope everyone is having a good day with little or no SE and I hope it is a lovely sunny day by you all!
Jul 25, 2019 11:00PM starr42 wrote:
Victoria: I got the headache with Zofran too. The MO prescribed phergren & 650 mg of tylenol. I wish I didn't switch it because I'd rather have a headache than nausea & vomiting all day yesterday. I went back to the zofran last night. That was day 3 post chemo for me. I've read day 3 is the worst.
Jul 26, 2019 01:43AM 2019whatayear wrote:
Starr I totally get that. I will get some extra strength tylenol and stick with the Zofran for now. :-)
Jul 26, 2019 01:54AM Flnana2 wrote:
Just took my first zofran...things are starting to kick in now...will watch out for headaches but wanted to get on top of the nausea.
2019-They put on my Neulesta before I left yesterday. The nurse attached it to my lower stomach. It has a green light on it that flashes so when I went to the bathroom in the middle of the night I had a night light attached to me....very handy :-) Good luck with your headaches as well.
Jul 26, 2019 04:39AM britgirls wrote:
Finana2: Re: "Do you alter between the two? Meaning do you take one and 6-8 hours later take the other?"
On bad days (days 1 and 3 for me) I'm taking Zofran or Compazine every four hours. I have alarms set on my phone. (8mg Zofran 7a, 3p, 11p and 10mg Compazine (11a, 7p, and 3a if I need it in the night).
Today is day 3. I feel jaded and tired but not as nauseous as last time. Can't wait to feel like myself again.
Hope everyone is having a good day r/t side effects.
Jul 26, 2019 08:03AM Oceanbreeze7 wrote:
Finana2- You have BlueCross BlueShield insurance? I have insurance through them too, and they said I could get $350 toward a wig. They told me that I needed a prescription for a hair prosthesis from my oncologist that lists my diagnosis. I'm surprised they denied you any coverage. If that still doesn't work, then check with the American Cancer Society or other organizations in your area
Jul 26, 2019 09:34AM Flnana2 wrote:
oceanbreeze7, if you don’t mind me asking, what state do you live in? I am in Florida. The rep I talked to at BC BS said they don’t give an allowance for medical wigs. I sent them the diagnosis and a prescription from my oncologist. Apparently, different states have different coverages. I may still try pushing them on it. The American Cancer Society gave me $70 toward a wig at tlc direct.com. The one I want is quite a bit more than that, of course.
Britgirls, thanks for the instructions on how you take your nausea medicine. The one dose I took of zofran worked great!
Enjoy your evening everyone and I hope you all sleep well
Jul 26, 2019 08:37PM jjpope1 wrote:
Good morning to all of you!!
Well my song went from eye of the tiger to came in like a wrecking ball. Did great Mon and Tues then Weds turns into hell again. I will sing praises that my nausea was good, doing the phenegan and 30 mins later zofran helped. But the headache and body pain was unbearable. Ended up having to go to ER last night cause I couldn’t take the headache anymore. I took all the pain meds I had and nothing touched it. I also did a extra acupuncture treatment yesterday am and nothing. Feeling better this am, I know it’s still there but it’s manageable right now. The scalp of my head is really hurting and I am now starting to lose my hair 😩😩 Tues was the only day I’ve worked this week. I’m soooo trying to keep my head in the game and keep pushing forward,.
One thing I did want to mention was at my MO’s office she said something about a grant they have to help with stuff, so ask your MO’s office if they offer anything like that or google agencies that are in your area that may. Whatever helps!!