Here's the plan---What advice or experiences can you share?

AngieD · January 2012

Since I first posted here on Jan 2, it has been a whirlwind of phone calls, tests, and appointments. I've had a CT scan, bone scan, and breast MRI, plus the receptor tests were finished. No mets, thankfully, but triple negative and aggressive--75% on the KI67 proliferation index. If the mugascan to check heart output is OK, I will be starting chemo on Tuesday: 4 every 2 week rounds of Adriamycin and Cytoxan, 12 weeks Taxol, 3 weeks recovery, surgery, 6 weeks radiation. (My husband will also be starting an Esophageal cancer clinical trial the next Tuesday with Taxol and a Phase II antibody.) Any experiences, words of wisdom, helpful hints, things to watch out for would be greatly welcomed! It's beginning to sink in that this is really happening. Have my big girl panties ready and shopping for BLACK boxing gloves (loved that.)
Angie

laughs_a_lot · January 2012

Ok here goes
I know I will forget some things but someone else will remember. Drink drink drink while in chemo. Don't wait till you are really sick to take the anti-nausea meds. The minute your stomach rumbles take them as it does not get any better with waitng. For post surgical get some pajama tops that have some low pockets in them for the drains. You can sew some into already existing pj tops but put them on the inside.

SIROD · January 2012

A Matching Set of Black Boxing Gloves to you & hubby
I have no advise for you Angie. I think VickiSam did a great job and so did Laugh_a_lot. Wishing you will those black boxing gloves in knocking the cancer out! Hoping after the treatments you will have a long dance with NED (no evidence of disease).

Wishing your hubby and both of you the best,

Doris

Cinkal · January 2012

I had the same cocktails, 4
I had the same cocktails, 4 infusions of adramyacin/cytoxin every two weeks and 4 Taxol every two weeks. The adramyacin was harder for me than the taxol. I felt a little foggy for several days after the infusion. I kept a journal which helped to show a pattern of how I would feel. I had a hard time sleeping the first couple of days due to the steroids. The fifth day was usually my worst day. I just had to rest more that day, and had less energy. I would take the anti- nausea medication before I felt nauseous. The medication worked and after day three I had no need for it. I actually had a big appetite on chemo, due to the steroids I believe. I was still able to do most things on chemo, just rested and took more naps than usual. I am lucky to be a stay at home mom, so I didn't have to work. I would start feeling more "normal" than back to chemo I would have to go. It is frustrating, but we do what we have to.
Taxol was much easier for me. There was less fatigue and no nausea. There was a little bone bone.
Like everyone said, drink lots of water. I tried to do moderate exercise when I could and that helped. Try to eat a balanced diet. The only thing I couldn't stomach was coffee, and I love coffee. I traded it for hot tea until I was off chemo.
Good luck with your treatments

Cindy

mom62 · January 2012

Info
Hi Angie,

My first round I did 4 A/C 4 Taxol every 2 weeks. Make sure your infusion center has popsicles otherwise they make you chew ice because the A/C can cause mouth sores. I had no problems with these four. The Taxol threw me for a loop. I would have chemo on Thursdays and Fri-Sun I'd be on the couch with muscle and joint pain. I popped percocet to help me get through. I hope all goes well for you and remember this is just my experience everyone is different. I also had to take nuprogen shots for 10 days after chemo because my white blood cell count was very low and it helped raise it so I could continue with chemo. God Bless.
Positivity.

Terry

jessiesmom1 · January 2012

My Chemo Experience
Hi Angie,

Welcome to the club no one wants to join. Almost exactly 2 years ago I was also diagnosed with TNBC - Stage IIa, Grade 3. This was 2 years after my husband had been treated (successfully I might add) for Stage III colon cancer. I had an excision biopsy, complete axillary dissection, and right mastectomy. I had a tissue expander put in at the time of the mastectomy. 2 weeks later I had a port put in and then I had 4 rounds of A/C (Adriamycin and Cytoxan) and then 12 rounds of Taxotere. I did not have any radiation. I had my reconstruction surgery 6 months ago. On the left (non-cancer) side I had a breast reduction/lift. That turned out very well. On the right (mastectomy) side I had the expander replaced with an implant. I was not at all satisfied with the way that turned out and on Dec. 22nd I had revision reconstruction surgery by a different surgeon. She removed the 1st implant as well as scar tissue that had become very hard to the touch. The pocket was reformed and a product called Strattice was used to reinforce the pocket. An entirely different type of implant was then put in. It was a 4 1/2 hour procedure - outpatient if you can believe it. I went home with a pain pump and 2 surgical drains. All of that is gone now and I am feeling and looking pretty good.

There are SO many things I could say about my chemo experience but I hardly know where to begin. It might be easier to come here and ask a specific question when one comes up for you. Right now, I have 2 pieces of advice.

1. When the Adriamycin (aka The Red Devil) is being pushed through the IV lines by the nurse during chemo make sure to drink something icy cold. My nurse said this would help to prevent mouth sores. My husband made me a large fruit smoothie that I took with me to the office. The Adriamycin is not hung from an IV bag but is pushed via syringe directly into the tubing. I never got any mouth sores.

2. Talk to your surgeon and oncologist before your surgery about exactly what kind of exercises you can do with the arm on the surgical side(s)and when you can do them. There is an understandable tendency to protect and not use the arm on the affected side. Big mistake. The shoulder joint can develop major adhesions and become so stiff that it is virtually unusable. I should know. This what happened to me. I ended up having to have shoulder surgery by an orthopedic surgeon to free up the joint followed by 4 months of physical therapy.

We look forward to seeing your posts in the future although not the reason you have to post them. Good luck. You can do this.

IRENE

Double Whammy · January 2012

jessiesmom1 said:
My Chemo Experience
Hi Angie,

Welcome to the club no one wants to join. Almost exactly 2 years ago I was also diagnosed with TNBC - Stage IIa, Grade 3. This was 2 years after my husband had been treated (successfully I might add) for Stage III colon cancer. I had an excision biopsy, complete axillary dissection, and right mastectomy. I had a tissue expander put in at the time of the mastectomy. 2 weeks later I had a port put in and then I had 4 rounds of A/C (Adriamycin and Cytoxan) and then 12 rounds of Taxotere. I did not have any radiation. I had my reconstruction surgery 6 months ago. On the left (non-cancer) side I had a breast reduction/lift. That turned out very well. On the right (mastectomy) side I had the expander replaced with an implant. I was not at all satisfied with the way that turned out and on Dec. 22nd I had revision reconstruction surgery by a different surgeon. She removed the 1st implant as well as scar tissue that had become very hard to the touch. The pocket was reformed and a product called Strattice was used to reinforce the pocket. An entirely different type of implant was then put in. It was a 4 1/2 hour procedure - outpatient if you can believe it. I went home with a pain pump and 2 surgical drains. All of that is gone now and I am feeling and looking pretty good.

There are SO many things I could say about my chemo experience but I hardly know where to begin. It might be easier to come here and ask a specific question when one comes up for you. Right now, I have 2 pieces of advice.

1. When the Adriamycin (aka The Red Devil) is being pushed through the IV lines by the nurse during chemo make sure to drink something icy cold. My nurse said this would help to prevent mouth sores. My husband made me a large fruit smoothie that I took with me to the office. The Adriamycin is not hung from an IV bag but is pushed via syringe directly into the tubing. I never got any mouth sores.

2. Talk to your surgeon and oncologist before your surgery about exactly what kind of exercises you can do with the arm on the surgical side(s)and when you can do them. There is an understandable tendency to protect and not use the arm on the affected side. Big mistake. The shoulder joint can develop major adhesions and become so stiff that it is virtually unusable. I should know. This what happened to me. I ended up having to have shoulder surgery by an orthopedic surgeon to free up the joint followed by 4 months of physical therapy.

We look forward to seeing your posts in the future although not the reason you have to post them. Good luck. You can do this.

IRENE

Don't do anything you don't
Don't do anything you don't want to do, drink lots and lots of water, rest (don't overdo) and take all your meds as directed. Report side effects if you have them when you have them. They usually have help for just about anything that happens.

Good luck to you and your husband.
Suzanne

Tkitty · January 2012

Double Whammy said:
Don't do anything you don't
Don't do anything you don't want to do, drink lots and lots of water, rest (don't overdo) and take all your meds as directed. Report side effects if you have them when you have them. They usually have help for just about anything that happens.

Good luck to you and your husband.
Suzanne

All very good advice. Rest
All very good advice. Rest when you need to. Do what your doctor tells you to do. Everything will turn out fine. One day at a time. T

Texasgirl10 · January 2012

Tkitty said:
All very good advice. Rest
All very good advice. Rest when you need to. Do what your doctor tells you to do. Everything will turn out fine. One day at a time. T

Great advice
It looks like you've already received great advice, but I would like to add that if you have a port either request an ice pack for your port site for about 10 minutes prior to the stick or about 45 minutes prior to the stick put some preparation H on a gauze pad & place it on the port site. This really does help minimize the pain of the stick.

I am so sorry that you have to go through this. You can do this & when you feel like you just can't, come to the board to get refueled. Get plenty of rest and know that we are all with you.

Hugs & God Bless,

Dawne

carkris · January 2012

Texasgirl10 said:
Great advice
It looks like you've already received great advice, but I would like to add that if you have a port either request an ice pack for your port site for about 10 minutes prior to the stick or about 45 minutes prior to the stick put some preparation H on a gauze pad & place it on the port site. This really does help minimize the pain of the stick.

I am so sorry that you have to go through this. You can do this & when you feel like you just can't, come to the board to get refueled. Get plenty of rest and know that we are all with you.

Hugs & God Bless,

Dawne

let your body be your guide,
let your body be your guide, dont compare yourself to anyone as we all react differently. Rest when you need to, when someone wants to tell somethihing scary say"if this doesnt have a happy ending I dont want to know" remember its the chemo not the cancer causing you to feel yucky. I got neuropathy with taxol, so I would have taken B6 and not taken hot baths (had another problem that I needed to do this) if I had known. Try to be active studies show this helps in many ways, so try to do exersize. Remember to post with any questions, thoughts, concerns!

carkris · January 2012

Texasgirl10 said:
Great advice
It looks like you've already received great advice, but I would like to add that if you have a port either request an ice pack for your port site for about 10 minutes prior to the stick or about 45 minutes prior to the stick put some preparation H on a gauze pad & place it on the port site. This really does help minimize the pain of the stick.

I am so sorry that you have to go through this. You can do this & when you feel like you just can't, come to the board to get refueled. Get plenty of rest and know that we are all with you.

Hugs & God Bless,

Dawne

let your body be your guide,
let your body be your guide, dont compare yourself to anyone as we all react differently. Rest when you need to, when someone wants to tell somethihing scary say"if this doesnt have a happy ending I dont want to know" remember its the chemo not the cancer causing you to feel yucky. I got neuropathy with taxol, so I would have taken B6 and not taken hot baths (had another problem that I needed to do this) if I had known. Try to be active studies show this helps in many ways, so try to do exersize. Remember to post with any questions, thoughts, concerns! Remember hair grows back and you do lose it EVERYWHERE LOL that it stinks to lose your hair but it will be ok!!!

jne66 · January 2012

advice
Chemo side effects always kicked in n 3rd day for me. It wa like having a flu bug achy joints some nausea very tired. i ended up having to do neulasta after each chemo tx. I didn't like very sweet foods and salty foods tasted awful. i always wanted cold and crunchy. Baby carrots, apples and oranges. I know one day i ate 6 apples. It was kind of like a pregnancy craving I have no idea why. When i went to chemo I'd tell myself I can do this today. each day i woke up I gave myself the" I can do anything got 12 hours" pep talk. I had to have someone come and help me do my bills. After first round I sat down and paid bills but neglected to transfer money out of my savings. good luck you can do this

DebbyM · January 2012

SIROD said:
A Matching Set of Black Boxing Gloves to you & hubby
I have no advise for you Angie. I think VickiSam did a great job and so did Laugh_a_lot. Wishing you will those black boxing gloves in knocking the cancer out! Hoping after the treatments you will have a long dance with NED (no evidence of disease).

Wishing your hubby and both of you the best,

Doris

I didn't have chemo Angie,
I didn't have chemo Angie, but, want to wish you good luck and to let you know that the pink sisters are all here for you. So, post often and keep us updated as to how you are doing.

Best of luck to you and your husband,

Debby

Rague · January 2012

Each of us can only give our experiences as no 2 of us are the same.

For me , A/C (4 - 2 weeks apart). On day 3 and 4 but resting took care of that.was not bad at all. It didn't stop me doing anything - just a bit tired. The Neulasta shots only put me to sleep for 2 hrs almost to the minute 2 hours after them - never any pain. I did loose all sense of taste and appetite. Hubby called me from work several times a day to remind me to eat. Never had any nausea but I religiously took all the anti-nausea meds. My eyes and nose 'ran' clear water continually - OTC moisturizing eye drops helped. 2 weeks after last A/C I had a mod. Rad. Mast..

Started Taxol (12 weekly) 3 weeks after surgery and it was nasty - I existed on the couch in front of the TV the entire time - total/complete EXHAUSTION. Still no taste or apetite. Again no nausea so I decided 1/2 way through to try not taking anti-nausea meds and still didn't have any nausea. I have been told that rather or not you morning sickness(I had none) can be an indicator in many cases rather or not you will have chemo nausea. A week after last Taxol, I started 25 rads.

Rads were easy - everyday I felt better. After they were over, I did burn very bad though.

Other thoughts - if you have a port check with your Center and see if they have numbing spray to use when accessing it. My Center did but I did hVe one access done in the hospital without and it HURT. If they don't then ask for EMLA (lidocaine) cream to put on 1/2 - 1 hour before access is scheduled so it doesn't hurt. Cover the cream with a small square of Saran Wrap to keep it off you clothes and to work better. I never used it during chemo as the spray worked good but Jan 29 will 2 years since last Chemo and I'm keeping my port til I hit the Majik 5 years I have to have it flushed every month which is not done at my Center but at my VA Clinic so I use the cream now.

Drink water Y I usually forget to mention this as I'm a big water drinker anyway but drinking fluid is important.

Any time something seem 'wrong' contact your DR or his/her PA/RN.

Sure I forgot a lot .

Susan

Ask about "Look Food Feel Better" at your Center or local ACS. It is a great class for women. You will be given a bag with brand name makeup and taught tips on dealing with lokking good so you can feel better wwhile doing chemo. They also have info about wig (usually hazve some with them) and wig care. Check it out.

jnl · January 2012

Double Whammy said:
Don't do anything you don't
Don't do anything you don't want to do, drink lots and lots of water, rest (don't overdo) and take all your meds as directed. Report side effects if you have them when you have them. They usually have help for just about anything that happens.

Good luck to you and your husband.
Suzanne

Great advice! Mainly, drink
Great advice! Mainly, drink as much water as you can and just take care of yourself. Put you as number one!

Good luck,

Leeza

Here's the plan---What advice or experiences can you share?

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