Starting chemo September 2014

HockeyCat

SueBe - it was recommended by a few friends and also ladies from BCO. For me it is too early to tell. He told me it could help manage pains, dry mouth to tummy problem, and immune system. Hope it'll be help. I plan to see him every week. I'll keep you posted.

Amber - welcome to the club. Waffles sound good! We just spent the Labor Day weekend in Vegas right before I started chemo. Next time, I wanna try that waffle place!

I did well for the first 48 hours, but started feeling achy this afternoon. Is this that notorious bone pains from Neulasta? I took Tylernol after dinner, went for a little walk, and now resting.  

fossf

Hello Fellow September 2014'ers

I start Taxol & Herceptin next week on Friday 12th, Taxol weekly for 12 weeks, Herceptin every 3 weeks for a year. I'm very nervous. Lots of physical preparation but mentally I'm starting to freak out.

Still undecided on a port, though my onco nurse neighbor thinks my veins are good enough to not need it. We shall see how my veins hold up.

Started taking B-6 vitamin today, and Onco office advised LGlutamine (powder 2 tsp in 8oz fluid) three times a day for three days after each Taxol to help prevent neuropothy. 

Cutting my hair short tomorrow to give my kids (and me) time to get used to losing it. I'm having a wig cut into a long bob as well to have it ready. I've been reading them a book called "Nowhere Hair" to explain whats going to happen.

I intend to start using Latisse on my eyebrows and eyelashes on Monday to try and keep them, I really don;t know if that will work but I think I can deal with hair loss if I can keep my eyebrows/eyelashes. My Oncologist  has no issues with me using it, and is interested to see if it does help.

Work I'm intending to take Fridays off on infusion day and then see how my fatigue is by Monday, then change my days if needed. I do a lot of face to  face meetings but can do them from home. My boss and team are very understanding which I appreciate.

I'm so glad you started this group Amy. I don't feel quite so alone in this when I can check in on how everyone is doing.

Fiona

Lori1967

Hey all, just checking in before I go to bed. 

My first chemo went pretty good, I am tired but not crashing. I've tidied up and done the dishes etc...

I have a headache though, could be from the chemo, the stress, the thunderstorm....I finally gave in and took 2 Advil as the Tylenol just didn't work.

I tried to do the baking soda rinse, but yuk! I do have some biotene mouthwash as I have chronic dry eye...which I hope doesn't worsen...and my mouth gets dry normally from time to time.

I think I want to increase my fibre, I am worried about constipation and I know I don't get enough. I am a pretty picky eater though and looking at all the high fibre foods that I like...I'm limited!

I think though, I might just make a soup and fill it with beans and vegs that I like and freeze individual servings to eat one every other day to start. Funny I'll eat that stuff in a soup or stew, but not on a plate!

Well guess I'll see what tomorrow brings, to bed I go!

AmyG516

Good morning ladies!  I just updated starting dates with new members.  Please PM me if I missed anyone or have the wrong info listed for you.  I'm trying hard to keep it up  

Amber- my MO also told me that I would have nausea issues during treatment because my morning sickness during my pregnancy had been so severe.  I had to go for vitamin b shots during the first 4 months of my pregnancy because the nausea was so bad. I've been taking the nausea med regularly since my infusion and it has been manageable. 

Fiona - welcome to the group! I'm so glad you are finding it helpful. We will all get through his together!!

Lori- I've been fighting a headache too ever since infusion day.  Advil is my friend - Tylenol just doesn't touch the pain!

VintageGal1111

Hi Cut1epie

 I could not have done all the iv tests, blood draws, chemos & Herceptin without the port. What a life saver. I hope you do well without one but if they think you need one, go for it!

Good luck

VintageGal1111

k4ph

I had morning noon & night sickness all through my pregnancy, ick. But had no nausea during 5 months of chemo. weird huh. I had the all the premed iv drugs. And was given an RX just in case. I think maybe twice I felt a slight queasiness next day & took the rx. Ya just don't know, so many side effects, some get hardly any, some get odd ones, some get all! Good luck to you!

SiStar-TX

Nellieduck,

Having options is wonderful!  Unfortunately some ladies don't have as many.  Yesterday while I was get my treatment of few of the ladies had something a chemo that was red, that was so intimidating to me!.  Since I will be there every friday I will able to meet some local September Sister!

SiStar-TX

Welcome K4,

I love your attitude!  WE GOT THIS!!!  Right now I am continuing as usual.  I did an enjoyable 1.5 walk with my dog although I am starting to fill a bit queasy so of course I ran the Zofran and its sidekick to head it off at the pass.

I am -/-/HER2neu+ so I will also be in treatment for one year.  But I am told that once chemo is over my hair will grow back.  Here is Texas I cannot imagine wearing a wig and dealing with hot flashes!  Whew!

I have traveled around the world but have yet to visit Vegas. I will definitely add that to my list of things to do.

Enjoy each day as it comes and continue to make plans!!!!

SiStar-TX

Welcome Lori,  I too am a picky eater.  Oatmeal, beans (black beans, vegetarian beans any type)  fiber one bars. Kale salad.  There's a grocery list on one of these boards that I found helpful.

i also found sugar free lifesavers to keep my mouth moist.  I did not want to spray with biotene every 15 minutes or so.

SiStar-TX

Greetings Fiona,

I am also very glad that I have found this group!  I find myself on it multiple times of day because it helps alot. My chemo cocktail is Taxotere, Carboplatin, for 6 sessions ever three weeks and Herceptin every week.  I too decided to take friday off for chemo days.  It may change if the infusion time shortens.  I am a lysol fanatic and before anyone walks into my office I screen them with questions about their health.

I was having a few aches after the chemo but I drink lots of water so it seemed to help.   

Let me know about the Latisse.

YoLonda

Mimmi71

Mimmi71 9/8

zjrosenthal

Well I'm finally starting chemo this Monday.  The only problem is getting my prescription for neulasta.  There are some insurance issues that are a bit frustrating.  Otherwise we are good to go.  The copay for neulasta is  $2744.  This seems to be due to the donut hole.  How do people who can't afford this manage?

SueBe

Today is the first day after the n-shot that I finally feel better. I can't believe how much pain I was in day 4 and 5 after the shot. What did I learn? Take claritin 2x daily and with aleve. My MO doesn't think the claritin is what helps. But I disagree. The key to managing SE is staying ahead of them, as many of you have already stated. I hope the 2nd and later times will be better for me. 

Lori1967

I am getting my nshot Tomorrow.......what's this about claritin? I wasn't told this....please give me instruction....I don't wanna be sick!

Thanks!

k4ph13

Got my Neulasta injection today.  So far haven't felt any pain.  This nausea is ridiculous, though.  I've been taking my ondansetron every 8 hours, plus whatever they gave me in my IV, plus the sample of some sample medication my doctor gave me.  I guess I'm one of those lucky ones who will be sick! haha

Didn't end up making it to Waffles Cafe today.  I guess they got robbed last night (wtf?).  This could work in my favor, though!  At least I won't ruin my love for waffles by eating them when I'm not feeling well!  We went to IHOP instead and I was able to eat a little bit of hashbrowns and two(!) pieces of bacon.  I'm not sure who could resist bacon, even sick lol.

Went to the movies with my son - possibly the last time I do that before getting better.  Don't want to pick up some nasty flu bug - and since most of the movie theaters are in Casinos, I supposed there's a good chance of that!  We saw Guardians of the Galaxy.  Wow! Was that opening scene hard to watch.  Kid gets to see his mom dying of cancer in the hospital.  I made a promise to my kid that I wouldn't get that sick. 

Other than the nausea and 3 hour nap for today, I've felt great!  No bone pain at all!  Keeping fingers crossed that I can skip that side effect.

Lori - I was told to take Claritin two days before getting the Neulasta injection, and for 2 days after.  I also read here maybe, somewhere, that on the day of injection you should take Claritin in the morning and the evening.  Taking claritin and ibuprofen is supposed to help with the bone pain from the injections.  Working for me so far, though I may be speaking too soon.  We'll see how the next few days go.

zj - Did you have to pay that much before they gave you the injection?  That price is crazy.  I think my insurance is covering everything.  I have a 2250 out of pocket total to meet before they start picking up 100%.  I still have copays, but nothing like what you're describing.  Is there any help you can get?  My office asked me to bring in my tax forms from last year so they could see if I qualify for any help, but I haven't done that yet.  Maybe there are some other resources in your community that can help?  I've been wondering the same thing... how do people afford this treatment without insurance / good insurance?  It's scary and sad. =(

Be well, ladies!

~Amber

SueBe

Lori1967, It's supposed to help with the bone pain. I can say that it did for me. I took it the morning of and then once a day for two days. That wasn't enough. Now I take it in the morning and night, 8am, 8pm. It has helped me a great deal.

zjrosenthal

Well it seems that the first fill of the neulasta scrip puts me in the donut hole where insurance pays very little.  Once I pass $4000 out of pocket, the copay is supposed to go down.  At this point I will pay whatever I have to in order to get the med in hand by Tues. to give myself the shot.  AAaaaagghhh.  It is so sad that we have to go thru this added stress while dealing with fighting for our lives.  

SiStar-TX

SueBe,  I am heeding everyone's warning about the claritan and Alleve. I am glad that you are feeling much better!

SiStar-TX

SiStar-TX

Lori1967,

I was also given ondansetron which is the generic form for Zofran but I was told to take it every 12 hours as needed and the other drug (the name starts with the letter "p" every 6 to 8 hours.  So it boiled down to 2 - 1 - 2.  I also think the other one is a steroid.   I really have no nausea to speak of but I do get tired.  My paranoia is getting sick from rainy weather because it is rare here in Texas but we seem to be having thunder storms right now.  

My meals basically consists of oatmeal and fruit.  I am making some turkey noodle soup in my slow cooker and I plan to at least handle the broth.

Feel better and start counting down to when you can go back to that waffle house!!

Enjoy your Sunday!!!

k4ph13

Found this link in another discussion.  Maybe it will be helpful to some of you.

http://www.neulasta.com/neulasta-support-center/neulasta-financial-help.html

Lori1967

What a morning! I left my hubby a note to go to the drug store first thing this morning to get me some claritin!

I started to feel constipated yesterday, and have been walking and drinking water with stool softeners. I was miserable last night...

So this morning I sat down to look at my instructions for the day. I had the claritin and ibuprofen ready and looked for the dextramethasone, nothing...

I found the rx, I think I remember the pharmacist handing it back to me and I looked at it today and saw the date was scratched out and Oct 4/2014 written over the top.

I called the Oncologist on call, he told me it would be okay since I have other anti nausea meds, my pharmacist is closed today. My nausea hasn't been bad really.

So just before I'm ready to head for the clinic for my neulasta shot I headed for the bathroom and finally gave birth to a monster!! OMG, I thought I was going to pass out! Phew.

Got my shot, she'll show me how tomorrow and I'll do the rest myself. I have 8 days of them and I'm not driving there a back for that. 

Came home and had a nap, No bone pain so far...:) 

kjsimpson

For those of you dealing with Neulasta and didn't take Claritin the day before your shot and for 4-5 days later, my experience was that when I didn't take the Claritin the day before the neulasta shot then it had a smaller impact on helping with the bone pain.

For your amusement (true story):  As with most new cancer patients, my life was a blur the first couple of weeks after diagnosis.  Things were going pretty fast and furious... So, in the "Chemo 101" session with the nurse, I didn't 'hear' the part about taking Claritin to offset the Neulasta bone pain.  So, I didn't take it the first time.  I had chemo on Friday, Neulasta shot on Saturday and Saturday was a good day.  Then I woke up on Sunday morning feeling pretty high levels of bone pain.  Monday morning I'm calling the oncologist's office asking about the bone pain.  The nurse asked me if I took my Claritin.  I kinda got upset... "What?!?!  Why are you asking me about my allergies?!!?! I'm in a LOT of pain here. Can we talk about that?!?!!"  To which she very politely reminded me. "Kathryn, the Claritin IS for the bone pain." (sheepishly apologized and she called in a prescription for pain killers)   I took some Claritin after the phone call but it didn't help much.  It did help a LOT when I took it the day before (and for about 5 days after) the second round of chemo.

Hope you all are doing well. 

Zimastar

Hello Sept 14's!

I start TCH on 9/9. 6 rounds of all 3 then poor little H for 6 more cycles. This is the 3rd time my chemo has been rescheduled. 1st time for wound healing delay after radical double mastectomy. 2nd for emergency TE removal on right side due to infection and 3rd and hopefully last...to allow for this huge open cavity that used to be my right boob, to heal more. Ive been told 9/9 is the day. Apparently theres a 4 month rule?? Im not an oncology nurse so I have no clue! So, I'll be rolling in on Tuesday with an open wound... Yay freaking me!!! 

I did get a port. My good veins are on my right now off limits side and I'm a nurse so I know how these meds can burn up some veins. I really don't like the thought of the drugs going into my heart either but I know my heart can take it. 

In preparation- I've accepted a friends demand to clean my house once a week & to watch my two 7yr old monsters when needed, went grocery shopping today,ate sushi, laundry, packed my chemo boredom bag, updated my blog & wrote out my honey "get this done" list. Tomorrow I'll be preparing a hospital bag, because I'm a realist & know I'll be admitted at least twice in the next 3 months. I'm also packing it so I don't have to rely heavily on my husband to gather the things I may need. Oh, and I think I'll be picking up some Claritin now lol. 

I hate that we are on this train together but glad to have you all with me. Good luck to all of you starting tomorrow!!

HockeyCat

I had a pretty rough weekend... My fever went up to 100, and my body was aching all day... Tylenol didn't work for me, so I'm taking Advil every 4 hours to manage the pain. I took Claritin a day before Neulasta shot, but got horrible bone pains starting Saturday. I could barely move for the whole weekend. I'm coming out of this and feeling fine this morning. I'm going to work today to see if I can handle....

Kris103

HockeyCat - I'm sorry to hear you had such trouble with the bone pain from the Neulasta shot. If it's any consolation, the first one is usually the worst. I'm glad you're feeling better, and I hope things go well for you at work.

AmyG516

HockeyCat - horrible bone pain started for me too Saturday night.  I started taking Claritin every 12 hours as someone suggested on here. It helped some Sunday but I need to remember to do it right away during my next round.  I started back to work today also. Been off for 5 weeks so it was great to go back!  Very tired tonight but satisfied because I managed to do it.  We'll see how the rest of the week goes. Hope everything want well for you at work today!!

HockeyCat

Kris103 - Thank you. It is good to know that the first one is the worst. The first half day was awful since Tylenol didn't help at all. I know Advil works for me so I'll take it next time. 

AmyG516 - I'm so proud of you! I couldn't get through the day at work. My back and shoulder were so tight and painful, I couldn't focus on work. I left early and had massage. I'm feeling much better now. Hope the rest of the week goes well for both of us.  

VintageGal1111

Lori1967

 it is believed that Claritan D can help with the aches & pain from the Neulasta. Be sure to discuss it with your Dr. My onco didn't know anything about it. But the chemo nurses did. I think it is worth a try. I don't know if it helped me, I still felt like I had the flu & got run over by a bus but I took it. But be sure your dr knows all OTC meds & supplements you take during chemo.

Good luck!

SiStar-TX

I am picking up claritan tomorrow and a good stool softener.  I am miserable!  Any of you ladies have mouth pain?  It feels like needles on my tongue.

GailWNY

9/12