Starting chemo September 2014

PoppyK

I am so reassured reading all of your updates! Even if you are experiencing SEs, it helps me feel supported. You are in my thoughts and prayers.

I haven't started chemo yet. My MO did not recommend a port. Do you have a port? If you don't have a port, is it going okay without one?

Thanks for your help!

DaniellaD

I didn't get a port. They started my IV in my hand where the veins are very tiny.  When the taxol was infused, I started to feel a lot of burning.  So the nurse moved my IV to my other arm. Then it was fine. It was only my first infusion so don't know if they will be able to continue without a port if only a few veins are viable.  I hope so but we will see.

SueBe

This is my eighth day after my first chemo and I feeling really down due to the nuelasta shot. I thought I could handle it. I've taken claritin every morning with aleve but the pain persists. I am seeing the MO tomorrow. I was doing fine with the other SEs but this bone pain in my lower back is making really depressed. It's like a tingling, then sharp pains. When I walk it gets worse. Ugh! I don't know what to do to keep this pain in check. I am also scared it will not get better. It has been the same for three days. Maybe need better painkillers, but that brings on more SEs.

PoppyK

Thanks for the info Daniella. I will keep it in mind.

SueBe, Oh my, I am so sorry you are in so much pain. I hope your visit with the MO tomorrow brings you relief! I was looking at your Dx, and noticed that you are Stage 1a. I don't know how old you are, but my MO told me that if the nuelasta shot's SEs are too much for me, I didn't have to continue them. She based this on my age (49) and good physical condition. She stated that my immune system would recover faster than someone older or in poor health. Perhaps this would be an option for you since the nuelasta is to boost your immune system? 

barremom64

SueBe- I've had a rough 24 hours myself and my MO and I attribute it to the Nuelasta...oh, and also thrush.  I had same bone pain in back and couldn't walk last night either. Had to take a pain med which I haven't needed since my BMX. Thought I had masterfully "side stepped" most of the side effects, but this took me down. Continuing the Claritin (2x daily) and Aleve.  

PoppyK- I asked my MO if I could skip the shot next time, since I'm super fit and "young". He said "no way" as my WBC was excellent. So the shot was doing it's job--and preventing Neutropenia. 

Kris103

Poppy – I have a port, and I love it.
It makes infusions and blood draws very easy. I've even had it used
for contrast for a CT scan. I've always been a difficult stick, and
of course my MX side was the better of the two. I'd be pretty nervous
about doing Adriamycin without it, or having to do a year of
Herceptin. That said, lots of others have gotten along just fine
without it.

SueBe and barremom – I'm sorry to hear about your
Neulasta SE's. Those were the worst in my previous experience. Some
people seem to not have a huge amount of pain, but I had to take
narcotic painkillers and basically slept through a couple of days
until it subsided. My MO won't let me go without it, since I wound up
in the hospital with a neutropenic fever after my first chemo.
Somebody in another thread referred to it as NeuNasty (wish I could
remember who, they deserve the credit!), and I agree! Sending you
both gentle hugs and wishes that the SE's subside soon!

SueBe

Thanks Poppy, Barremom64 and Kris,

I took another claritin and feel a lot better. I also too a long nap. I though one claritin per day was enough, but now I see for me two will be necessary. They only give 6mm shot for everyone, no matter their cocktail, age, health or size.  Aren't these docs supposed to consider us as individuals and not simply follow protocol? Feeling better but disheartened. 

Hope you guys dealing with SEs have a pleasant and restful night. Sending my love and hugs.

JeanaS

9/9 for me, first timer.  ER-/PR- HER2 positive, 6 cycles of pertuzumab, docetaxel, trastuzumab and carboplatin.

SiStar-TX

Greetings September Sisters,

  Today I actually heard someone refer to themselves as having chemo brain!  I had to chuckle because I realized that I had asked about the phrase. I was told that I would probably get Neulasta, I am so greatful that you ladies have already prepared me for the SE.  I am so much more relaxed about my infusion day and I owe it all to my Team. 

SiStar-TX

I have a port and I am so glad that I do because my veins are tiny and they move around.  I was so surprised when the nurse didn't have to take blood from my hand using a butterfly needle!

Aksnowbird

I'm starting 6 months of chemo on September 17th. Triple negative stage 2B cancer that has spread to lymph nodes.  AC for 3 months then Taxol for 3 months. Surgery after chemo and radiation. I've bought scarves and hats. I'm going to shave my long blonde hair off then get fit for a wig. I'm doing all the yard work and house work in preparation. Groceries for my children things in order for their care. Just making sure that on the bad days there's no worries. All of this and nothing can prepare me for what I'm feeling inside of what's to come. I have mostly positive thoughts but fear sneaks in. No one can tell me what to expect except for all of you who know.  Please continue to share. The good and bad as I want no surprises. Do any of you have other health issues too? I pray for each and every one of you for strength and healing. So glad your the ones I have this journey with. Prayers. 💗

Moderators

Hi JeanaS, welcome to BCO. Glad you found us but sad you needed to.

We wish you all the best with your chemo with minimal SEs 

The Mods

Aksnowbird

I have a port too. It will be used for the first time on September 17th when I start chemo. Does it hurt?

Lori1967

Hello Ladies.....

My port was put in today, my arm is a bit uncomfortable but tolerable. I sort of hoped they would have put it into my left arm, since I'm right handed and my lumpectomy was on the left anyway.....oh well!

All the nurses and everyone is so nice and caring. I have been treated very well...but I am still a bit scared. 

I go at 1pm tomorrow, my Mom will drive and stay with me...

Then on Sunday I have to go to the clinic to have my bandages changed and my shot. They will teach me to do it, so it will save me going in for 8 days. 

The other thing I am a bit nervous about....I took all my rx's into the pharmacy on Saturday, but he couldn't order them until her rec'd the authorization from the benefits dept. at the hospital. It was a long weekend, and he needs to order the one med. I meant to ask when I was there for the chemo class yesterday and totally forgot!!!  So today I told them, and they faxed it over. I spoke to the pharmacist and he'll have it all in tomorrow....but that means I miss my one med tonight, I hope I do okay. It's for nauseau and I wonder if I should just take a gravol or something myself?

AmyG516

aksnowbird - They used my port for my first infusion this week and it didn't hurt. She numbed the area with some spray and told me to take a deep breath when she hooked it up. It was just a small pinch - so much easier than using my bad veins. Very glad I have it!  

Good luck today lori1967,SiStar-tx and ginabean with your 1st infusions!!

Cut1epie

Starting chemo today at 2.  Don't have or want a port.  Nurse doesn't believe I need one and advised against getting one if not needed.  Had a get together with my family last night.  Mother went through BC over 15 years ago and thinks shes an expert.  Started preaching to me about not being down and how my sadness and crying was being influenced by the devil and how well she handled it.  I just lost it in front of all family.  I know everyone went home sad but I can't make them feel good.  I can't pretend to be happy when I'm not!

Cut1epie

Thanks for this very helpful info.  I start chemo today and I'm really scared.  It just amazes me how people not going through BC keep telling you not to be scared and stay positive and not to cry.  They mean well but they don't get it.  Glad to be a part of this forum of women who do understand.

Robin73014

Good Morning Ladies!

I am 3 days out from my 1st infusion day! Haven't had the easiest of times but I do have advice!

1) take the Claritin the DAY OF your infusion..it takes a day to kick in and prepare you for the Neulasta shot. I took my Claritin too late and still am experiencing bone pain

2) take the Ativan at night , it will help you sleep... Restless night last night . Could have been avoided if I took the Ativan . I was afraid it would disturb the Claritn

3) if you have diarrhea take Imodium AD it worked wonders!

4) Chemo brain is real!!

Not the best 1st showing , but the point of this community is to share our thrones and roses! Thank you class of 2013 for such great encouragement and your wisdom!!

Xoxo ....going to work!!

Lori1967

I know how you feel. I don't know that I've come across one person who hasn't told me,"Oh you're strong you'll get through this!!"  I don't feel strong at all.....

I feel too that while it's wonderful that so much research has gone to breast cancer, it's still cancer. Sometimes when I tell someone I was diagnosed, they almost act as if I have the flu and I'll be just fine after I rest and take some meds. Breast Cancer has lost a little of it's importance in the cancer world just because so many survive. But when you are diagnosed, at least for me, I tend to only see the the ones who don't...

Last Sunday was a really bad day, I couldn't get out of bed....just cried all day. My dh and daughters got freaked out by it. They thought I was losing my mind.....it all just hit me.  But I think I needed that day, I'm scared, and I think really, it's probably a normal reaction...mine just came a little later.

Aksnowbird

thank you Amy. I'm glad it wasn't a bad experience for you. Is your port in your chest? I read someone has theirs in the arm.  I don't start chemo until the 17th. Been having nightmares and I never do that. Trying to stay focused and be positive but wow BC can sure stir up the emotions. Will continue to be here to following and support  my sisters on this journey. Blessings for a beautiful day 

Aksnowbird

Hi Robin, you said chemo brain is real. What is it? It's so nice to read and understand everyone's fears, emotions,  experiences and journey on here. Although it's not what we want sharing sure helps each one of us understand and pull through together. 

Aksnowbird

What vitamins do you suggest or have you found helps during chemo? Thank you

HockeyCat

Good morning Robin73014! Thank you for your advices. I started taking Claritin on the day of infusion. Haven't had bone pains yet. I can fall asleep at night but always wake up around 3am. I take ativin then to go back to sleep. I feel a little groggy in the morning though. Have a good day at work! I'm going to acupuncture this morning then heading to work.  

Aksnowbird - My onc suggested taking Glutamine 10mg for neuropathy, starting day before chemo x 7 days. I'm taking it and haven't had the symptom yet. I also heard from someone that B-Complex could ward off neuropathy. I'm also taking biotin and silica for the hair as I'm doing cold caps.

Cut1epie, your family and friends love you. Just don't know what to say... just like my own family. ;-) When a friend of mine was diagnosed with a cancer last year, I didn't know what to say either, and might have said something he didn't want to hear... Good luck today with your first infusion.

Cut1epie

Been contemplating not going to chemo but I know my sister will come over and drag me there kicking and screaming.  Had a bad time last night.  But just a few minutes ago something really strange happened.  I am a person who is always happy no matter what with a pretty smile all of the time.  Sometimes I don't even know I'm smiling until someone mentions it.  My smile went away on 8/14 when i found out i had breast cancer.  

About 30 mins ago i put my Ipad in sleep mode and packed it in the bag I'm taking  with me to chemo.  I showered, got dressed and all of a sudden the Ipad started playing loudly Kirk Franklin's song 'Smile.'  Don't know how that happened.  I was a little startled at first and then I started smiling and laughing but a little shaken. The lyrics go like this: 

- Today's a new day, but there is no sunshine.

-Nothing but clouds, and it's dark in my heart and it feels like a cold night.

-Today's a new day, where are my blue skies, where is the love and the joy that you promised me you tell me it's alright.

-I almost gave up, but a power that I can't explain, fell from heaven like a shower now.

-I smile, even though I hurt see I smile,

-I know God is working so I smile,

-Even though I've been here for a while (what you do?)

-I smile, smile..

-it's so hard to look up when you've been down.

-Sure would hate to see you give up now

-You look so much better when you smile, so smile.

I can't explained what happened.

SiStar-TX

Hello Ladies,

One down and five more chemo sessions to go.  Today was a very long day because it was my first day.  So far the SE I am noticing is that I really need a nap!  Also I have terrible cotton mouth.  I will take my anti nausea drugs soon so that I can stay in front of that terrible feeling.  I have also decided to keep my solid food down to a minimal.  Any thoughts on that?

SiStar-TX

Robin

Today was my first day and I am very tired; I have no SE but I have read so many helpful hints to combat them that I am ready mentally. I was told that my labs indicate that I didn't need Neulasta this first time but its on standby if an when I need it.  I will have my Alleve and Claritan ready. 

I take Ambien to sleep so I don't think that is going to be a problem!

WE GOT THIS!!!!!

HockeyCat

Well done SiStar-TX!  Lucky you don't need Neulasta shot. I had one yesterday. I'm taking Claritin and went to acupuncture this morning. I started feeling a bit achy but no need for pain meds yet.

SueBe

HockeyCat, 

Can you let us know how acupuncture helped you? I am thinking of doing it to. What do they work on? Fatigue, pain, ?

Kris103

SiStar - Yay for round 1 down! I hope you're having a good nap. For the cotton mouth thing, using a rinse of water with baking soda can really help. There's also a product called Biotene oral rinse that can help a lot. For that matter, Biotene also makes a toothpaste, too. If your dry mouth starts turning your tongue white and fuzzy-feeling, call your MO, because thrush can be an SE and they'd probably want to prescribe a mouth rinse for that. As far as how much to eat, it's usually easier to have smaller, more frequent meals as opposed to 3 larger meals a day. Keeping crackers around in case of an unsettled stomach can be helpful. BTW, I'm SOOOOO jealous that you're not having to do Neulasta! Awesome!!

k4ph13

Hello friends,

Adding myself to the September 2014 club!  I started chemo today; it wasn't too bad.  Felt a bit light headed and dizzy right before treatment ended, so they gave me some fluids.  Probably a reaction to the steroids, they said.  All in all, it took about 2 hours. The nurse who did my chemo class said if I get motion sickness, or had morning sickness with my pregnancies, I will probably have nausea from chemo.  Have any of you heard of that?  Also getting the Neulasta shot tomorrow morning, and then waffles!  We have a great little cafe nearby that has the best waffles.  Hopefully I'm up for it.  I've decided even cancer isn't going to stop me from getting waffles with friends, though.  We will see who wins this little battle.  As long as I win the war, I suppose it's ok!

With flu season coming up, my boss has told me I should start working from home so I don't get sick.  I'm hoping that "chemo brain" doesn't interfere with those plans too much.  I don't know what I'd do sitting around all day doing nothing.  Probably spend more time on these forums! haha

~ Amber