Chemo in May 2014

thank you for responding lespring, linda and couture911(love that name btw) - I am so encouraged by your experience with nausea. I have been driving myself batty over it. The torture! I have fibromyalgia so the aches and fatigue don't phase me one bit, it's the nausea that I have been worrying about. They gave me all the same meds I believe most of you have mentioned. The pre-meds are a customized cocktail of anti-nausea, emend, steroid, etc, as well as extra IV fluids that I asked for to help any chance of headache. Post chemo I have Decadron, Ativan, Compazine and they added Zofran to the list today but my MO said that it can create headaches and constipation so I'm saving it just in case. 

Those that have a port, does it hurt the first time they stick you? I will 5 days post op. 

Linda, do you go back in for the emend three days later? I was told it was given IV only - is that the case with you?

Couture911 thanks for the tip on the Neulasta, I asked if they could please run that through my insurance and have it delivered to me for the next dose. I wish I would have worked that out before hand, but that's ok. And I have no problems finding some fat tissue to stick myself - no twig here! LOL. 

So what I got out of my visit today was, I shouldn't be nauseous but if I am it will be mild and temporary and if not I can go back in for IV fluids and more emend, there's a very good chance that I will be constipated, need to stay hydrated, could get mouth sores stay on top of it with the biotin, eat small meals, the steroids will make me gain some weight, and I will be bald inside of three weeks - lovely! 

My wonderful husband is out in the garage right now putting together a balloon wall for this journey. He is going to put up 84 balloons, each with an inspirational note in them and at the end of each day I get to pop it and read the note. He said he wanted me to have a way to mark off the days other than a calendar, and to look to see the progress over the course of the 12 weeks. The popped balloons will stay there so that I can see how far I've come.  He's such a sweetie - not sure what I would do without him.

I can do this!!!

Any advice on what and when to eat on the day of infusion? 

here's a link to the Nuelasta program

https://www.amgenfirststep.com/ProductNeulasta.php

My insurance has a $29 co pay for the shipment of nuelasta I am getting on Friday morning at my home. It is a 30 day supply. I have been VERY happy with my insurance so far (knock on wood). My bill for the hospital was $1,056 and my surgeon was $450. Other bills have been from about $9.95 to $154.

I have met my $3,000 deductible though.  

Lespring...My hair started falling out today in a meeting at work.  I went to get a hat and got rear ended in the parking lot. Fortunately, the kids weren't with me, I am fine, but just the topper to a shitty day!!!  Now, I am full blown in a cold, thanks to the 6 yo.  Saw MO today, white count was 1.8, guess that explains the cold.   

Thankfully, My job is such at I can work from home.  Wig won't be here until Friday, hat is when I can pick it up, get it trimmed etc...bright side, not going to work will keep me from having to deal with the next couple days. It will just look like I got my hair did!!!

Hair question...if you decide not to buzz, how long to fall out?

Probably different for everyone, I was told there are a lucky few on taxatore that do not lose it all, but for me between day 15 anf 17 it became very apparent it was all going to fall out. My hair looked dead, dry and.brittle. I couldn't comb or style it, it hurt at the root. If I just lightly run my fingers through it came out. Tons came out in the shower too, so I was surprised to see how much I still have. The women at the wig fitting explained the while the hair is all dead and pulling it out is easy, it irritates the scalp and makes it sore. Leaving it long adds weight, also making it hurt. Getting it buzzed and letting your body push the dead hair out of the shaft was recommended. It feels so much better. Its still shedding like crazy, I'm guessing by next week it will be gone.

I am little but nauseated yesterday and today I am jut wondering if anybody experienced after a week of first chemo.

Btw, here's a pic of my buzz cut. Loving it, easy to take care of. So jealous of men now, lol.

Debiann, I LOVE my buzz cut too!!! Wash and wear was never this good before. Told my husband, "I may like it too much!" and if my hair doesn't come in better than it was before, I might just stick with this! I did get my ears pierced right before I did it. Had them done years ago but let them close. Now I like them because they make me look slightly more feminine with my shaved head. LOL Today is day 15 for me. Hair on my head firmly in place, while eye lashes and pubes are falling out. 

Hi guys!  I am not sure if I am posting in right spot but have a question.  I meet with oncologist tomorrow and am wondering if there is anyway I may not have to have chemo or is it a good probability I will have to have it?  I know we are not Doctors but am wondering others opinions on it.  Here is the info I know, again not asking for medical advice just a opinion on what everyone thinks.  I am 34 years old I have DCIS in right breast nearly 60% of breast was grade 3 dcis,  I also had 9mm of IDC in the same breast, which was grade 2.  No lymph node involvement and had a double mastectomy and I am also BRCA 2 +.  I do not have a onco type yet I am just trying to see if it is a big chance of chemo. Thanks for any advice.

Hmmmm I would wonder what your Oncotype test says. My nodes were not yet involved, but I can't take tamoxifen. My risk of recurrence without Tamoxifen was 25%, but the benefit of chemo was an 18, which is a gray area group of "unknown benefit". I opted for chemo. I just don't want chances again. Ever. For me, if I have a recurrence 2 years down the road I would always wish I'd done chemo this time around. 

Whatever you decide to do will be the right decision for YOU. You can only make a decision based on the information you have available to you. Do what you think is right. 

Finishing up day 2 after round 2. Tired and have nasty reflux but managed to do tasks and walk yesterday and today. I'm not an exerciser and I don't eat the best but the walks at least every other day after dinner have helped with acid, fatigue and attitude. Hair started falling out day 14 so had a shaveabration with all my sons friends. I had cut it shorter and shorter until finally shaving which stopped the sore scalp. Other symptoms from first go round were a nasty case of thrush that made everything taste like dirt until i figured out that my tongue was fuzzy. Got an anti fungal for that and it got knocked out. Interestingly, Neulasta and chemo can make you blood sugar go up which can cause fungal infections so watch how much sugar you eat. I took off the week of treatment but worked the other two. Just make sure to rest if you need it especially if you have a long commute home. I also bought a fan that blows on me at night so I don't wake up with hot flashes. Still have to wake up to pee but I guess we can't have everything! My bad days last time were overnight on 3 and 4 with a little nausea and bone pain so hoping zofran and Vicodin before bed will help that.  Here's to more SE free days for us all!

Hi Cammychris - you will learn today from the MO whether the ontype test was already ordered when you had the BMX.  Hopefully it was and he/she may already have the results which will start you on the road to this decision.  If it wasn't he/she may still order it if your insurance will cover it.  SInce I was triple + my insurance would not cover it as the HER2+ factor said chemo for me - still would have like to know my oncotype score though.    Once your MO has that number he/she will talk to you about the benefits or not of chemo in your individual case.  Ask him/her those questions if that discussion doesn't happen automatically.  Also - there could be other factors in your individual case beyond the onco score that will help the MO make a recommendation for you.  Good luck with your appt today and let us know how it goes.

Hello All!

I am on day 12 of Round 1.  I have done extremely well.  Really no SE from chemo and two days of significant back pain ( I have back issues anyway) from Neulasta.  I want to share my regime in hopes it helps others.  On the recommendation of this group I took ginger capsules (after checking with MO) three days prior to chemo and three days after (2 capsules twice a day).  I began super hydrating two days prior to chemo (drinking tons of liquids (gingerale, gatoraid) and at least 10 - 12 glasses of water) and continued that through the entire week.  This water recipe was on Steve Harvey the day I got home from chemo and it has helped me feel good: 6 cups of water, 1 cucumber -sliced, 1 package of mint leaves, 1 lemon squeezed in the water and another sliced up in the water.  Highly recommend this.  You do have to get up to pee through the night, but it is worth it!   I feel strongly that the hydration helped me tremendously.

My labs were great yesterday.  My MO said that while the chemo SE are not necessarily consistent with each treatment, that the Neulasta SE seem to be more so.  My days of pain were 6 - 8.  This time around we are going to start pain meds and muscle relaxers on day 5 to try to stay ahead of it and hope I am not completely down for two days.

My biggest issue has been constipation.  I had to take pain meds with my port surgery which was 4 days prior to my first chemo.  I was constipated from that, then the steriods did not help it any.  I will be on a regimen of Colace and Miralax next time around starting two days prior.

The support available to us is mindblowing!  If you have not already, please seek out Breast Cancer Resource Center, Cancer Coilition in addition to ACS.

I just found out that the Livestrong Foundation has a 12 week exercise program in partnership with YMCA.  It is specifically for cancer patients and survivors...and their family.  It is FREE to patients and family.  We currently have a membership and will not have to pay for that membership during the program.  Pretty Cool!

The hair thing is a little scary, but I am thankful for all your posts!  It helps!  I cut my hair shorter last weekend - myself.  I could not bring myself to pay for a haircut that would only last a week.  I picked up my "cranial prosthesis" yesterday.  It still cracks me up...it is not a wig to the insurance company.  I'm lucky...mine will pay.  I got a cute, short, highlighted wig for $240 (C&S Fashions - Dream USA) and then I got a piece that just has net at the top with hair below to wear with hats for $40.  I expect most of time I will just wear a scarf, which I have yet to purchase.

Sending lots of positive thoughts and prayers to all!

Glad to hear that everyone has been able to manage their SE so well.

I had my port placement on Wednesday. They left a tube in there since chemo was going ot be the next day. I was in much more pain than expected that evening. Had to take Norco go get to sleep and then once every 4 hours through the night. But my last dose was at 7:30 am Thursday and I did fine from there. 

Thusrday was chemo. Took Prilosec in the morning along w 24 hour claritin (I see this recommneded for Nuelasta, but I'm not sure how much and what days to take it). They gave me the emend tri-pack (three pills in a little folder) and I took one right away. 

They hooked me up to IV fluids, pushed the Adriamycin, and the nurse went over more information while she did that. Then the Cytoxan when in an IV drip and once that was over she had me sit until all the IV fluids were used up. Must have been a lot of IV fluids because I was going to the bathroom nearly once an hour when I got home. I needed the ladies room right before I left the cancer center and my pee was red, like they said. But at home it has only been faintly tinged orange. Probably because I was so pumped with fluid. 

Took 1/2 a norco plus one Compazine before bed. Slept ok, excecpt for 3 bathroom breaks overnight. 

Took 24 hr claritin, another Emend and another Prilosec this monring.

Just self administed the Nuelasta shot. They did not ship it to me, but the hospital pharmacy let me take it home yesterday so I can give it to myself. My copay was $35, but I see they have a program to bring it down to $25. The pharmacist gave me a packet from Neulasta that included a free digital thermometer and the discount program information.