Starting Chemo in September 2017

Milkweed93

Harley - if you are 4 rounds, then you are halfway, like Amy says! If you have more than that, then remember that THERE IS A FINISH LINE and YOU WILL FEEL BETTER after all this is over. I do remember after #2 feeling particularly down because it had already felt like it had been a lot. I'm still anxious before this next round on Monday and it will be my last one. It's kind of like you want to know what to expect but you don't want to either. Talk to your MO or get one of the Onco nurses on the phone. Your rash could be because of the Taxotere, and the MO might have you take something (steroids, Benedryl) or be able to prescribe a cream. That's what I'm hoping for (as soon as they get back from lunch) when I talk to them. You can do it Harley!!!

PauletteK

Harley - you need to call your MO and report you have rashes especially they are itchy. I have red spots but they aren’t itchy at all I put some cream from my dermatologist and it goes away the next day, but every time they come back. Speak to your MO and they can reduce your dosage. They did that to me because my neuropathy.

hopebringscourage

I have been off work since 8/21 and originally planned to go back on 10/2 after my first treatment. Well here we are 10/26 and I'm still off. Although I haven't felt awful I feel like commiting myself back to full time would be emotionally taxing- I'm taking full advantage of healing physically and emotionally. This all still seems surreal! tomorrow will be my halfway mark 3 of 6. The anticipation and wondering what I will feel like is exhausting. I started on Zoloft which I really think has helped my emotions. I have been talking with a psychologist too:) all my friends and family are supportive but at times it just sucks everyone's lives just continue and I feel like I'm stuck in this bubble waiting for it to pop.

Congrats to everyone on any little milestone and I'm sorry for those of you struggling!

Is anyone icing their hands and feet during chemo Carbo or Taxotere? Just wondering if not do you have issues with neuropathy? Palms of my hands for a few days felt burned but no neuropathy yet...knock on wood!

I still have eyebrows/lashes but a little thinner. Although I miss my hair terribly it has been nice not worrying about it!

Trying to find a silver lining in the middle of all this!

PauletteK

Hope - do one day at a time, we will see the end of the tunnel .... everyone are telling me this. I’m icing my hands and feet however my infusion for taxol is 3hours long my packs only last for 2 hours. I have ordered additional ice packs but not soon enough for tomorrow infusion. My fingertips are numb toes a little numb. So I hope things won’t get too bad I am half way on my taxol. At this point, I do what I can.

mkn86

thank you Paulette for letting me vent tmy frustration out.

I tried looking for a thread within the community for venting but i found that there was too much anger concentrated in one place. And i refuse to allow myself to spiral into that. So i ended up following this other thread called little slices of joy. a small reminder that there are good things each day to be thankful for.

hopebringscourage, i completely get you. sometimes i don't go on social media because it feels like me watching the world pass me by. everyone moves forward with their lives and mine is on pause during treatment.

Mojojennijo

Mkn I’m in the same boat with the possibility that ac isn’t working and I’m 3 in.

I am having an issue tonight where wheb I stand up I almost pass out. I get the dizzy faint feeling and the black dots in my vision. Is this a normal Side effect?

Kiwi-in-Thailand

Amy, so glad that you're nearly done and moving on to the next lot... you're a few weeks ahead of me but on the same treatment. It's great encouragement to hear the increasing positive notes in your comments..

Harley, stick with it.... I was in exactly the same mental space after round 2 and was dreading round 3 (of 4) which was yesterday. I have to say it gets easier... you know more what to expect, can medicate ahead of time and know better what works for the SEs and what doesn't. I swear that Coconut Water really helps with the Big D and also any nausea.

I've had a lot of swelling and water retention after each cycle and my MO tells me this is the Taxotere and gave me some mild diuretics to take if it's getting me down. It's also what's driving up my blood pressure a bit. Oh and the rashes.. lots of little white fluid filled pimples all over my face - ugh ugh... I've been putting a couple of drops of 100% tea tree oil into my normal moisturizer and it works a treat.

My RBCs are also low but better than last time as I've been eating lots of red meat (a struggle for me). I've also added a tablespoon or so of organic black-strap molasses into my morning food and I've noticed more energy and it may have helped with the improved RBC counts. My MO thinks it really works but not to reduce the red meat and spinach.

Is anyone's hair growing back already? I lost mine in mega clumps on day 12- 14 cycle 1 but was left with about 30% of random clumps which basically fell out over the next week post buzz cut. Now, it's all growing back madly like a fuzzy carpet. All white, soft and pretty much everywhere on my head and on my legs. My MO says that it's normal but I haven't heard of it before - i started to get a bit paranoid that the chemo wasn't working properly. My eyebrows and eyelashes however have started to fall out and I'm getting better with the eyeshadow and pencils - never been a strong point of mine :-(

The biggest positive kick from Cycle 3 yesterday was that I met the Radiation Oncologist and made all the appointments for the radiotherapy which starts 10 days after my last chemo. I so want this all done by Christmas. We're doing 15 days plus 3 boosters, so 18 altogether. Should finish on Dec 22nd... I'm such a control freak that it's a huge plus to know what's going to happen well (assuming of course that there's no SE dramas between now and then)

Stay with it folks... we can do this and the downs will be followed by the ups...

FarAwayToo

Hope - I have the same feeling: "at times it just sucks everyone's lives just continue and I feel like I'm stuck in this bubble waiting for it to pop". My friends are supportive, but I find it hard interacting with my healthy friends. I envy them, and can't help it. Their lives continue, and I'm stuck in cancer drama! I also see it's hard for them to find the right words for me: do they treat me like I'm normal? Or like I'm sick? I found very helpful talking to friends who faced a similar serious diagnoses: one had benign cyst in his brain that resulted in seizures, have been operated twice. Another had cancer at 35. Not many friends my age with BC (of course), but I found a friend of a friend who had it at 51, and talking to her was very nice.

mkn, I just want to give you a big-big hug. Hope the discharge is nothing serious.

mojo, I do have some dizziness-lightheadedness. It seems to be brought on by all kinds of weird stuff, sometimes by someone talking - often in lower tones. I noticed it gets worse when I'm tired. It's like a wave passing through my brain, very weird. Of course, I freak out about brain mets! talked to my onc today, she said what I'm experiencing is normal on chemo. I don't experience any of it while I'm in a shower or outside. I think straining my eyes is also making it worse, so I opted for audiobooks, esp. during infusions. It started after 3rd Taxol. It is better some days, and worse some others. Definitely the worst on my 3rd day, when all side effects kick in.

PauletteK

Far and Hope - yes I kinda stop communicate with most of my friends, many of them don’t even know what to say to me. I’m glad one of my older friend from TX who became my mentor now, who was cancer nurse for years and retired. Another person is my DH, he supports me daily and my best friend.

Mojo - did you check your blood pressure could it be low? I guess low RBC can happen also.

Kiwi - sounds like you got several SE glad you got them under control.

Anyone of you have numbness on your fingers or feet??

FarAwayToo

Paulette, I have had a pinched sciatic nerve almost 10 years ago, it resulted in pain and burning down my leg and pins and needles feeling in my foot. I do get something similar on my day 3, but so far it passes. 

I also get a feeling all my skin hurts to touch for a few hours on my second day after infusion. Like clockwork: infusion Thursday, skin hurts Friday at 8 pm. It passes by Saturday morning.

PauletteK

Far - do you soak epsom salt on your feet or hands? Do you think it might help some

cndble

Hello, toughcookie_21. I also have been using caps from chemocoldcaps. I've had good success and my last chemo is in 4 days. I'm wondering how you got your insurance to pay for part of them? I called my insurance, which is VERY good, and they said they didn't have a way, even when they tried to do it as a prosthetic, to cover it.

FarAwayToo

Paulette, I don't do anything for the neuropathy. Luckily, my doesn't last long, although I'm a few treatments behind you,

I can't ice my fingers or toes. I have Raynaud's, a condition where blood circulation in fingers and toes stops completely when they are exposed to cold. It manifested first when I was 19, and it gradually got worse. At 40, I start wearing gloves when it's 45 degrees outside, I try not to touch anything cold, and I still get it all the time. It doesn't stop me from doing winter sports (I'm an avid skier), but I do take pre-cautions (I switched to mittens for skiing and I often ski with a hand warmer - therma pack). With that, icing anything is not an option for me. I opted not to use Cold Caps for the same reason.

Soccermom22

It has been one week since AC #3. This treatment has really kicked my butt. It started out the same, I went back to work Thursday after treatment and I worked Friday. Saturday is my normal day in bed. After #1 and #2 I was back to work on Monday. But this time, I'm still not back to work. I'm taking my anti-nausea meds but I'm still gagging and throwing up. Actually ended up in the ER yesterday for dehydration and increased sugar levels. I'm notsure I can handle this 4th treatment already. MO office said 3rd AC seems to be the worst. Anyone else have bad side effects like this

toughcookie_21

cndble- I have not had any luck with it either. I did submit the invoice that CCC sent me along with a prescription for a cranial prosthesis that my MO wrote for me, but United Healthcare sent me a request for medical necessity and I haven't followed up. I'm not thinking that they're going to pay, but I at least tried. Have you tried just submitting the claim to see what happens? I think that is what people who have been successful have done.

soccermom, I'm sorry your most recent infusion caused so many SE's. Were you taking anti nausea medicine? My symptoms have been fairly predictable after each chemo. Sometimes they've been worse or less severe but definitely predictable. The only thing I'd say about chemo #3 is that I have felt nausea but I wasn't as goof about proactively taking the Zofran like I did for chemo 1 &2.

Harley_Girl

Thanks Milkweed, I know I can do it I just have to fight with my mind. The anxiety I am having is bad, I just need to take the meds to help keep that under wraps.

PauletteK

Hi September ladies group,

Our July and August chemo group have started a Facebook group so we can stay connect even after chemo. We felt that we went though such a life event together and we like to stay in touch. If you want to join, please PM me, ToughCookie 21, or FarAwayToo, wish I know how to setup their ID in link.

I will be having my infusion so I might not get to accept you as friend for hours.

OCDAmy

I'm done! I rang the bell and hugged all my nurses. They gave me a completion certificate and a survivor keychain. They were all so sweet. My daughter and husband took me out to lunch after. I'm pretty wiped out now. Getting the port out in three weeks. So many of you are half way there or getting close! Hang on, you can do it.

This was the sign next to the bell. Thought I would share.

Travel_Girl

Whoop!!!

Mojojennijo

kiwi, I have one patch that started to grow the last couple of days. I am 5 days out from ac #3. It’s on my crown where my cowlick is.

Paulette, I think it could be my bp. I haven’t checked it but I started noticing it was a postural thing. Like getting of from squatting to get something etc.

CONGRATS Amy!!!!

PauletteK

woot ! Woot! Amy!!! Congrats!!

Mojo - I got my number 7 down but it wasn't easy, I got reaction on premeds Yes Premeds not chemo. My heartbeat went up to 103,so I have to rest then I finally took Ativan through IV then I calm down so I went on to taxol. I still Think I have anxiety this morning, because my BP was high and when I measured myself daily my BP was fine. 🙁🙁🙁

Henrietta405

yay, Amy

mkn86

congratulations amy!!!

so my MO is switching me to weekly taxol. I went bec of the discharge and I was given antibiotics and was asked to get an ultrasound prior to switching to taxol+carboplatin. didn't seem worried about the discharge so... i've decided not to worry too. was told it could be caused my dead cancer cells that weren't being flushed out properly.

i still find this daunting and frustrating. but i'm more calm today.

I hope everyone else is having a better weekend!

PauletteK

mkn - It is tough to deal with all these SE and ups and downs. All I can hope is hurry to finish my chemo so I can move to next stage of this treatment. Sorry I don’t have better words to comfort you.

mkn86

thank you Paulette. you're right. despite the reason why i'm being switched to taxol earlier, this also means i will finish my chemo a few weeks earlier. that's one bright side.

not even sure if the discharge is a side effect right now. or caused by something else. my period is late... that could also be a reason. but i will keep talking to my MO about these things. just to be on the safe side (ironic at this point yes? haha) but also maybe the funny side is i have to figure out a way to not look like i'm lactating. hehehe i'm sorry i still try to make jokes to lighten things.

I'm confident we can finish treatment. all of us. but i also have to acknowledge that it is tough in all aspects. but the important point is we can finish it. no matter what our chemos are (3 months, 6 months, 4 doses, 12 doses).

PauletteK

Mkn, many women talked about their period stops during chemo, this might happen to you also. I’m glad you have a sense of humor on rough time.

Good night sister, have a good Sunday.

mkn86

Goodnight too Paulette.

Binniebin

Amy, congrats wow what a huge milestone, you made it! All the best for your chemo free life.

mojo, did you get your dizziness checked out? I found the cyclo ( only had cycle 1 so far) made me feel less clarity both mentally and visually. Hubby said I was also clumsy, a little wobbly on my feet Started in the last 15 minutes of infusion and gone 12 hr later.

Soccer mum good that you went to ED and got treated. Not looking forward to my 3rd treatment then, still have 2nd to go.

What day did the hair go on AC, I'm day 10 and want to go away the weekend ie day 15-16.

I am continuing to work. Treated Friday so day 2-3 off anyway. Took day 4 off work as steroids had stuffed my sleep routine. Day 5 ok, day 6 really busy day at work , totally totally exhausted and wondered how I was going to keep working. I'm so lucky though as youngest is 18 so could just put feet up. Day 7-8 easy work days which helped. I decided though I'd go and have a morning tea break 1 hour after I start so if I'm late for lunch I will be ok. I find I need to eat every 3-4 hours. Anyone else doing that. Not for nausea just hungry.

1 day at a time, 1 cycle at a time. Apparently

OCDAmy

Thanks everyone! Feels good to be done, just need to get through these last side effects. I got some really fabulous news yesterday, my oldest daughter got engaged! More determined than ever to beat this so I can see my girl get married! I am so mad at this cancer for disrupting my life.

DandelionHair

HI, I'm a newbie to this Sept group. Thanks for sharing. It's helpful to read others are having similar problems and we will make it through. I'm starting round 4 of AC on Wed. Then will have 8 weeks of double dose T. (If I can handle) I'm having trouble with neutropenia. Is anyone else having low white blood cell, low neutrophils? Mine are around .045 to .3 - I'm on an antibiotic but am still getting low grade fevers 99,9-> 100 and chills. MO said to go to the ER (if my temp reaches 100.4 For over an hour). I really don't want to go to a hospital. Tylenol and rest brought it down. Anyone else having same issues? That is 100.4 after Tylenol, correct? I've read it's common during chemo but haven't read much about other patients personal experiences

Thank you