January 2013 chemo group

Skigirl72

Colleen- I have GERD and I've been take Prilosec daily for about 4 years. They gave me protonics in the hospital. My MO said the chemo drugs give people heartburn sometimes even if you are on a daily reflux med. She said just to have some TUMS around just in case you get it.

I want to order a wig online too, but, I am waiting till I go and get my head measured. Most websites say most people fall into the 'average' size cap. whatever that means. So, I would go and have a consultaion at a shop and then you will know what you want to look for online.

Guilda's Club was nice. They seemed to have a bunch of stuff for the kids too... It looks like a nice community.

kiwikid

Here is the summary from the fasting study, they are starting with a 24 hour fast before treatment 2. Then it goes up by 12 hours for each treatment till a maximum of 48 hours is reached. The results won't be available until 2015 unfortunately.





Experimental: Arm I

COHORT I: Patients fast 24 hours before day 1 of course 2 of chemotherapy. If fast is well tolerated, patients may escalate fasting by 12 hours for each subsequent course of chemotherapy for up to 3 courses in the absence of unacceptable toxicity. COHORT II: Patients fast at the longest fasting regimen found to be safe and tolerable in cohort I before day 1 of each course of course of chemotherapy for up to 4 courses in the absence of unacceptable toxicity.



Here is the link to the study if you are interested

http://clinicaltrials.gov/show/NCT01175837



Thanks Nikki, my hair is a number 3 with a fringe! I'm now on day 18! I hope your first treatment goes well.



Xx kk

ziffy321

Finally sat down for my first round of Cytoxan and Taxotere.  With that plus the pre- and post-medications, this gal (who tries to avoid artificial ingredients in anything she swallows or absorbs) now feels like a walking chemistry lab.

I plan to get a long-overdue pixie cut and enjoy it until my hair starts to fall.  Then I may ask a friend to buzz me.

If you're looking for hats, scarves, turbans, wigs, accessories, etc., Headcovers Unlimited (headcovers.com) has a very broad selection!  I also love the Beau-Beau scarves (4women.com).  They are pricey, but they look and feel like they'll be worth it.

hope49

Hi Everyone!



Ziffy, glad to hear things went well...you're on your way!



Lauren, I am going to a Chinese dr for accupuncture...she's wonderful, so insightful was an MD in China working in oncology, knows a lot about working with the SE and so far so good! I agree a lot of it is mind as well, I'm also working with a great coach using imagery/hypnotherapy and I believe that's a big reason I made it through my bmx on only a few Tylenol! Can't hurt, right?



Nikki...good luck to you tomorrow, you'll be in my prayers tonight!



As always, thanks to you all for your sharing and support - it keeps me going knowing we're in this fight together!

SherylB

Nikki,

As for taking the zofran before chemo. The nurse should be giving you something in your IV for nausea prophylactically. Mine gave me aloxi which is like zofran but last much longer. Since you are getting the big A you should get something. I carried the zofran and compazine in my purse so as to have readily available if needed. Ask when you get there if they are giving you something, like enmed, or aloxi. Good luck I have made it through tx #1 last thursday so I am about a week ahead of you. So is Lauren15.

Sheryl

ziffy321

I received Aloxi with my chemo, but also was given a prescription for Zofran.  Is it appropriate to take both?

SherylB

Ziffy,

Absolutely, once I got home I felt queasy so I took the zofran and a couple of hours later the compazine. Kinda rotated them, never threw up and no problems, except the zofran may have been the cause of my headache. I don't usually have h/a and someone mentioned zofran as a possible cause. After thinking that through I took the compazine more often than zofran if needed.

Hang tough, Sheryl

Anonymous

Lauren, I am doing acupuncture and will have it every morning before chemo. My SE's were minimal, but it is hard to say whether that was all from from acupuncture or not. I'm not taking any chances though and sticking to it.

Skigirl, the hair looks great. Did you ever think about going short before this? Strange how this trip has given us so much bravery. My daughter took pictures of my hair before getting it cut, and now looking at the pictures I think it looked just awful! Of course I hadn't had it cut or colored for quite a while so it was in bad shape. As soon as I learned about the cancer I had it cut to shoulder length, but never colored it and didn't cut it since. That was in September. They say to do as little as possible to your hair leading up to and during chemo to assist with any chances of keeping it. Well, I really don't count on keeping my hair, but still figured there was no need in processing it.

Andrea84 Ciao, bella! This is a saying some of us adopted on this board because it just doesn't seem appropriate to say "Welcome" to a place no one wants to be. We have a lot of great ladies on here to share your experience with and learn from. I am on the same cocktails as you, TAC every 3 weeks. My first happy hour was the 3rd.

Bryona, I hope the fasting is going well. That is if you already started. I'm fasinated now!

lisaruby

Hi Ladies, real glad I found you I am still waiting on test results they say they should be in tomorrow of course the doc won't be til Friday and I think I will go out of my mind waiting. they were suppose to be back Monday when i had my appointment but they were delayed. anyway I hope you don't mind me jumping on this thread even if i don't know about the chemo yet. it sure seems like things move so fast and so slow at the same time. I am having a real hard time letting others (mostly my husband ) do things for me after surgery i just want things to be back to normal, and i fear that chemo will just knock the life out of me  

Bryona

Ugh. I fasted for a whopping 30 hours... and then got home tonight and ate a full meal. What a waste. I kept thinking that if I have an easy time with chemo, I won't know if it's because of the starving or because I got lucky, so maybe I should do the first tx the traditional way. Of course, that was me justifying doing what I wanted to do anyway. I was always afraid I wouldn't have the willpower to finish the fast if I hadn't seen the side effects for myself. I think I'll be able to do it next time, once I have two weeks of SEs to motivate me. But still. Ugh. What a waste.

On the bright side, it does give me a chance to get more information, and direct from the source. Well, not exactly direct -- it's through my father. He's a grant administrator for the NIA, so he has direct access to Dr. Longo. I wanted to ask him some questions, like about how starving might affect Neulasta. kiwikid, as long as I'm at it, I'll ask about whether any calories at all are allowed. What he's said so far is water and vitamins only, but I'm not even sure if there are any rules about which vitamins. Anyway, if any of y'all have questions about this, I'll see if I can get answers from the good doctor.

My dad gets so excited about having something he can do to help!

Bryona

Andrea, ciao bella! I wish you didn't have to be here, but I'm glad you found your way to us. And lisaruby, ciao bella to you, too. I'm sorry you're having to go through all of this. You're right about the time going fast and slow at the same time, especially at the beginning of all this. If you don't mind me asking, what kind of test results are you waiting for?

kiwikid, have you seen the case series report here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815756/ about the kind of starving I'm going to do (as soon as I find the willpower)? These weren't people in a trial (there wasn't one yet). They were people like us who were willing to give it a try and whose MOs agreed to support them. Anyway, most people fasted 48-60 hours before tx and 6-24 hours after, but there's one person who fasted for 140 hours before treatment! That's just crazy!

ziffy, our walking test tube, I hope you're feeling okay. And, of course, looking forward to the pixie pics! (For someone who isn't even planning to get a wig, I sure am obsessed with hair!)

Nance and Nikki, I'll see you at the bar tomorrow. I'm warning you, though: I'm kind of a cheap drunk. Shoot, I get tipsy from one pint of hard cider! I sure hope it doesn't turn out to be a karaoke bar, or I'm doomed...

Ci vediamo, belle!

Nanc620

Ciao Bellas!

I am such a dolt!  I misread the instructions on the pre-chemo roids' bottle (Decadron) and took two this morning thinking I needed to take 2- 2x a day from the day before until the 4th day.  I was going about my morning when it hit me!  BAM!!!  I was a lunatic...not a crazy mean lunatic just buzzing.  Had my appointment to get my wig and directly across the street is my mom's grave.  Now I haven't been there since we moved back from CA. (15 years).  But I was so compelled to go...I couldn't find her marker so I went to the office.  The woman I spoke was put there by God.  She drove me out to the site...and when she saw that it was overgrown (it is a flat marker...my mom knew she wasn't sticking around there!) she immediately wrote a work order to have someone come out and clear it up and also find the 2 aunties that are close by.  Well...I had a blubbery, snot running, ugly cry.  Mom showed up...and I felt her angel wings stroke my face and tell it all is well.  THen I was off across the street to Wig Central...came in all mascars running down my face having to pee like a race horse...after that I got the wig and reaffirmed it was the one for me.  My daughter and I will go down once it is time to do the buzz cut and then I will get a scalp massage and treatment, get the wig styled and we will go out to lunch.

Roid overload continued...I forgot my insurance card there...duh.  Went to Target and got every possible digestive remedy possible...my cart looked like an old man's ;-)  I refused to buy prunes on principle ;-)  Home again home again...and I have been online since then.  I'm just now getting a wee bit sleepy...

So...a few more things.  I made a "secret group" on Facebook and any and all of you arewelcome to be a prat of the club.  I added everyone who I'm now friends with so far...if you are on FB please friend me "Nancy Prior Phillips".  It will a place we can post more pictures etc.  I will of course stay here cause I'm part of the gang now!  

Naturopath preview before I go to bed.

* Do not use shampoo on your hairless head.  Shampoos have wax in them and can cause that ugly cradle cap.  She suggested some over-priced baby wash but also said that Johnson and Johnson Lavendar baby wash is great.

* Hard as Nails...both finger and toe nails.  She is actually going to be doing a study on it.  

* Lose the sugar...this is so hard for me!  I'm with Bryona...a real sweet tooth.  

* Claritin is good, extra B-6 added is better.  I'll get the dosage tomorrow.

* Complementary medicine walks hand in hand with chemo.  Accupuncture, massage, guided imagery and Reiki to name a few.  The best part of this is that she cited several studies that show when a patient has a faith...in God, Buddha, SpongeBob their chemo journey is easier and more successful.  A higher power gives us a soft place to land.  I think this forum counts, and so does she.

* I will continue with her...she works closely with my BS.  

* I'll give you the list of supplements tomorrow...it is hard for me to swallow all these pills but I already feel better head wise.  I'm off the Cymblata, on Xanax low dose and will try an herbal antidepressant combo after chemo.  For now I;m going to try to tough the Season Affect Depression on my own.  The last two days have been so sunny here, cold but sunny and I feel so much better.  I'll have to see if this works...it make be like Shoshanna nd the "hmmm bone pain may be interesting...NOT"!  :-)

*Vitamin D-3 at least 5,000 mgs. daily.  Have your levels tested...

Good night...I'll be the ol' lady with the puffy eyes at the bar after lunch.  What should I eat before??

much love, Bellas...we got this to quote my darlin' 18 y.o. boy child.

Nanc

Gilda's Club is great...seek one out.  THanks for reminding me, kiddo!

 

Zorina

Notes from Post AC#1-Day 12: 

So, DH orders a blade to shave our heads, when it arrives it's a blade attached to a small plastic ATV.  DH earnestly informed me that this is what Howie Mandel uses.   (Is the world getting weirder, or is it just me?!?!?)

I started seeing more stray hairs landing on flat surfaces the past two days.  This morning, the brush definitely had more hair than usual,  and I got a thin clump of about 20 hairs.  So, I guess we will be playing with Hot Wheels on our scalps this weekend. Zzzzoooom!

Today I get to meet with the MO and then head for some PT. The axillary node removal has left me unable to to raise my arm above my shoulder.  I doubt I will get full range of motion back,  but I expect they can help me get more than I could just doing exercises on my own.

I hope that everyone who hits the bar the next few days gets lucky! (And really lucky with those lottery tickets!) Personally, I am planning to go on a bender this weeked and will start with a Friday morning eye-opener. 

lisaruby

Hello, I am waiting on the oncotype results to see if i have to do chemo. they also did some genetic testing that the results are not back yet I think those could change everything if that comes back positive because they said when they took the blood for that if it comes back positive they would want to remove both breast and ovaries,I did'nt ask if they would continue the current treatment or if we would start over? guess I really did not want to know. I do know that if it comes back that it is genetic that they can just take it all  and get it over with.

NikkiLiz

Thanks everyone for your well wishes!

I'm getting ready to go for my day drunk, I'm actually very upbeat and ready for it. I got a ton of texts and calls yesterday and this morning that have made me feel great and loved.

I chopped 14" off my hair and I really like it. I guess short hair is "in" right now from what everyone is telling me! So look at of us being trendy!

Lisaruby-my thoughts with you girl. I read once "greatest fear lies in anticipation"- once you know everything you can have a plan and go head first into whatever you need to do. I'm genetic and they found my tumor when I was having a preventative mastectomy. I'm also getting a hysterectomy when my tx is over. Sorry you have to join us, but its a great place to hang out and rant and rave or have questions.

Nanc-thanks for the info! I'm trying to stay on the more natural side of things as well. I think I'll schedule acupuncture before my next treatment.

As for the wig thing-I went to a shop and was measured and courted and quoted $995! I said Thank you and immediately went home and did some online research (lots of people LOVE wigs) and ended up finding voguewigs.com and scored 3 wigs for $82. They came in 4 days,free shipping, and it happened to be during a buy 2 get one free. The brand is Forever Young and me having an average to large head size (i have a big brain) the wigs fit fine and are adjustable. I liked the brand because it had "younger" styles and nice colors. Chances are it will wear out in a month or so if worn daily, but for about $27 a piece i figured it's worth the risk and if I hated them (I don't!) I can keep them for Halloween. The pics I sent to friends said they looked great and not very "wiggy"- maybe I'll post some pics of me with them on here. I found shopping for them to be like shoes-I just wanted more and more lol!



T-72 minutes until happy hour-hope the hottie is working the early shift!

Ciao and I'll report back to all you lovelies!



Nikki

Skigirl72

Lisaruby- When I went for my genetic testing, I already decided that if it came back positive I wanted them to remove my uterus, both breasts and ovaries. Mine came back negative so we went with my original plan of just one with the TRAM. I wanted them to 'just get going and get it over with'. I still feel like that sometimes. You will have your answers soon. The waiting sucks and it can drive you crazy. Keep up with us here, there are a lot of smart informed woned on this board and I have learned a lot. Good luck and keep us posted.

Zorina- post AC#1 day 12... I want my DH to take my hair down to a #2 this weekend. We will see If I can get him to do it. Good luck with PT. I hope you can work on that arm.

Nancy 620- Vitamin D levels for me were very low. I've been on 6000 IU daily for a while. We do not get enough. We are inside and lathered in sunscreen most of the time. There are so many good things that happen when you get a good level of vitamin D in your system. We are not getting enough in our food. And I was laughing about your roid overload... you must have been bouncing off the walls. I was just on the normal dose and wanted to clean the ceiling.

Bryona- No way I could fast for more than 1 day. I had a hard time fasting the night before surgery. But, I think you are right. See what happens this time doing the normal stuff and then do the test the second time. ANd its good you can get info from such a trusted source.

Skimommi- I went back and put a few pictures together of me with the different stages of my haircuts. What a difference! Now I dont know what to do when it finally grows out after all this is done. lol

Sheryl B- I found the compazine to be the one I could tollerate the best. The other made me feel fuzzy and wierd. I did alternate between the ones my MO gave me to see which ones worked better. They all seemed to have the same effect except for the fuzzy feeling. so I will just ask for a refil on the compazine...

Lauren15- The cancer center I go to had a massage therapist, nutrition DR, Wig chick, etc... all complimentary tome while I am under their care. Check with your center to see if they have a name for you. And def check with your ins co. All kinds of things are covered once you have the BC diagnosis... I am going to look in my ins book to see about mine for coverage.

Good luck to all those who are hitting the bar today!

faithhopenluv

Hi ladies, I started chemo Feb 2 of last year.  I wish I could tell you exactly what your path will be, but everyone will experience something a little different.  My best advice is to hope that you have a much easier time than you expect and deal with things only as they arise.  Worrying about something that will never happen does no good and worrying about something that does happen doesn't fix anything.  You will get through it, and every treatment brings you closer to the end.  This is your journey, bring all the support you have with you.  Anyone that is not supportive or not what you expected don't worry - it is not your job to make them comfortable with your cancer, it is your job to get healthy.  Best wishes to you

Anonymous

Nanc thanks for the info. I too am a sugarholic -  as I sip down my morning chai latte. My diet hasn't changed a bit and I am a little fearful of what that means to my body. I'm buying a juicer this weekend though so I can at least get more veggies in me.

Zorina, the PT will do wonders and you surely can get that range of motion back, so don't sweat it. You'll be amazed that one day you will be sleeping with your arms above your head, doing downward facing dog, and all the normal stuff that you may think is a thing of the past right now. I'm 3 months post op, and other than some cording still my range is just about normal - and that is without going to PT as much as I should.

Nikki, eye candy at happy hour would be a great thing! LOL Please do post pics of the wigs. I've held back buying on-line for fear of them "looking like wigs". My mind keeps flashing this big bowl sitting on top of my head - like Marine Jahan who was the dance double for Jennifer Beals in Flashdance. I'm sure they have better fitting/looking wigs out there.

SherylB

bump

SherylB

bump

SherylB

bump

SherylB

Someone tell me how to keep something near the top of the page. I posted on page 21 the food information if neutropenic. I tried bumping but didn't do something right it didn't move.

Thanks, Sheryl

ziffy321

Lisaruby, I had my first mx ten years ago.  When diagnosed in the other breast in 2012, I was given the choice of mx or lumpectomy & radiation.  However, the results of my genetic test, which came in later, made it clear that mx was the way to go.  Already being a uni-boob, I had already decided that; I had the ovaries removed, too.  With regard to the need for chemo, I believe that the results of your oncotype test will help determine that.  Hang in there!

Anonymous

Tip of the day, especially for you gals that have a hard time drinking plenty of water . . . use a straw. Get those cute cold cups and sip away. It seems to help make it go down in larger amounts. 

louise8118

Hi ladies this is my first post.  Had my first chemo yesterday; should be working but had very little sleep two nights in a row and hot sweats all last night; yuck, and decided to pamper myself today.

Anyway Lisaruby, I had the genetic testing and they included my projected surgery date on the application so the lab knew results needed to be back before then - my surgeon said if they were positive the surgery would be postponed.  They were negative (first good news of this whole fun experience) and everything went ahead as planned.

Thank you everybody for the information and support - I have been reading all day!

Louise

russell33

Ladies, I am 8 days out from my first chemo and up until today everything tasted fine.  I went on my first outing to the grocery store and when I got home everything I tried taste like poison.  That is the only way to explain it.  Is this normal?  I feel like that would have happened right after chemo not now when I'm finally feeling better.  Any suggestions or is this just normal.  Thanks.

Anonymous

Russell~For me tastebuds go about Day 6-Day-8. I'm fine by Day 9. I'm on AC. I don't know how it is with other chemos.



Paula

russell33

Thank you.

NikkiLiz

Hey everyone!

Made it back from happy hour! All went well and feeling good -I have drank over a gallon of water and my pee is already pink. lol I go for my shot at 11 tomorrow.

Louise-welcome and sorry you have to be here. But its a great place and a blessing to have. I am a day behind you on Tx. You SHOULD pamper yourself -you deserve it! Hopefully you can take the time you need to heal. Keep us updated on how you are and hope tonite is better to you!



Nikki

Anonymous

Nikki~Did they tell you for the first few days after treatment, you should put the toilet seat down and flush twice? I guess it's because there's so many toxins in the waste from the chemo.



I hope your SEs are minimal.



Paula