January 2013 chemo group

Judy, that's great information!  I was looking around CVS last night for the Seabands/wrist bands for nausea but couldn't find them and they were so busy with people in line for prescriptions (they're saying this is a big flu season) that I didn't bother asking.  

I've been using a lozenge called Gin Gins that was part of my chemo pre-packet.  I thought they were effective enough that we tracked them down at Cost Plus World Market and ran out to buy more of the this past Saturday night.  We also bought a container of pickled pink ginger while we were there (sushi style) but I haven't tried that yet. 

So glad to hear you're keeping the nausea under control with natural methods.  I've been taking the anti-nausea meds, mainly because I'm so worried it will creep up on me and they say it's hard to chase it back once it starts.  

I haven't taken any oral steroids.  My only steroid was delivered in the first IV bag along with an anti-nausea med. 

ablydec, I was prescribed  the oral steroid Dexamethasone to take twice a day for three days after chemo. Some of the side effects included mood, mental, or personality changes, seizures, difficulty sleeping, increased appetite, and NAUSEA! These are just a few of the many listed side effects. I am pretty much a naturalist - we grow most of what our family eats right here on our farm. So if this script could be safely avoided (and my onc said it could), that was my choice.

For those of you just getting started, I am so pleased so far that I feel so well. I am sure it will get harder farther into this, but for now, I am just so thankful. the seabands are doing GREAT  for me - still haven't had to take anything else today for nausea.

This probably isn't the right discussion group to introduce this topic - I'm not familiar with the various areas of this board - never posted on one before this, so feel free to correct me and send me to the right place.

But I just came across some very interesting information today. I have tried to wrap my head around getting a diagnosis of breast cancer when I have been so conscientious ALL my life of diet, exercise, lifestyle, etc. I am a mother of 11 children, which my onc said that fact alone should have protected me from an estrogen positive cancer.

Anyway, I just thought today to check further into a prescription med my mother was given when pregnant with me - it was presribed to help prevent miscarriage (and later found to be ineffective for this) but was also found to cause defects in babies born from these pregnancies. Diethylstilbestrol
(DES) One statistic I found today said a 200% increase in breast cancer in female children over the age of 50! I just thought this a significant tidbit and wouldn't mind engaging in some discussion about his if there is any interest. As I mentioned above, I'm just not sure what group to possibly bring up this topic to.

Thanks for listening.

Judy!  I have to give you a link to a story I read just two or three days ago!

--

Title: Four Sisters Who Had Breast Cancer Sue Drug Maker, Blaming Mother’s Medication

http://boston.cbslocal.com/2013/01/03/4-sisters-who-had-breast-cancer-sue-drugmaker-over-mothers-medication/

Judy, I jsut read backward through the posts and I can't believe you have 11 children. That is so awesome!!A friend of mine has 8, and I love being at her house with all of the "goings on." I love the energy. Holidays must be beyond wonderful at your house. I would have had a fleet myself, but it wasn't in the cards with the size they were born at. LOL! 

Lauren15 I too start the chemo Thursday, Not sure what chemo you are getting. I am taking taxotere, and cytoxan. My oncologist told me they were as emetegenic as the adriamycin. The are going to be giving me something that begins with an A (axiol ??) at the start of treatment that is for nausea and last a long time. MY suggestion is to take the zofran as ordered even if not nauseated once you get home. I am more leary of compazine but use it to if you need to but zofran has minimal side effects and much safer.

As far a nerves I am a basket case today and every little thing has me crying. It is about the unknow even though nothing has ever been as bad as my mind made it. I have to be at the clinic for chemo at 0830 thursday morning (eastern time). I see you are in florida too I will PM you my cell phone feel free to call me.

Sheryl

JudyinNC,

  That's great about your 11 children.  I actually have eight (ages 8-26), and just married off the fourth last week.   For years, when my oncologist would remind me to get mammograms (I was still young, but had a history of Hodgkins, and a family history of BC), I would laugh him off and say that nursing lots of babies was protecting me.  Well, perhaps, but I'm sure glad I finally listened to him!   

Hi ladies

Just a note about mouth ulcers, I started taking lysine for them about a year ago, it's an amino acid and you buy it in the pharmacy for cold sores, but it works for ulcers and mouth sores too. I don't get cold sores but lysine has virtually stopped me from getting ulcers which have plagued me most of my life.

So if the salt and baking soda isn't cutting it, I recommend lysine. In NZ we can buy it in the supermarket, it's about $10 for a few weeks worth. Well worth it to avoid the sores in the first place.

I hope that helps someone.

Xx kk

I almost forgot one of the most important parts:

Good luck with your first happy hour tomorrow Amrdbit and MamaK! Remember, leave some of the good stuff at the bar for the rest of us.  And tell us how things go with your oncologist, Fighter. I'll be thinking of you, too.

(That smiley face reminds me: With all the bar-hopping in this group, we need a drunk emoticon here!)

Ci vediamo, belle!

Early Morning and Ciao Bellas!

It's 3 am'ish here and I woke up to take my next eight hours of that beautiful little piece of heaven called anti-nausea medication (and to rinse my mouth out with the salt/baking soda mixture). Praying for no mouth sores and just trying to be proactive.  I’ll have to look into the Lysine drops that kiwikid mentioned.

Yesterday (1/8) was my first day up and it went fairly smoothly. It was a super busy day there so I didn't get started with pre-meds until roughly an hour after my scheduled appointment. The blood draw for labs went fine (God bless the woman who knows what she's doing around someone’s chest and a port, she nailed it---oh wait, “nailing it” may not be the best choice of words---but she was very nice and quick.  On that same note, the numbing spray sort of worked, I felt a little stick. You take a good deep breath and the needle’s in.

First up: premeds, and those go in really quick 10 mins. tops for mine.  The typical anti-nausea and steroid was what I got. Herceptin was my first run and that was 90 minutes, Taxotere was next for about an hour, and Cytoxan rounded it out for me at about 45 minutes. I wasn’t told Neulasta or one of its close relatives was in my future. Needless to say, I’ll be calling later this morning to verify it myself,  I asked my nurse to verify that from my orders and she said no, none for me…which leads me to the nursing staff…

I had a nice enough nurse but man was she incredibly slow. I asked for a cup of ice (in my own glass container I bought) and it took her FOREVER to bring it back. Two other nurses would finish off one of my drugs and hang the next. I didn’t really get that TLC that I kept hearing I’d receive there.  My suspicion of her slowness was confirmed when a different nurse made the comment that she’d infused a total of 9 people over the course of the day and my nurse had only been with 3 patients. Now I pray that dropping all these drugs in people isn’t a competitive sport there, but hearing that gave me the green light to go “hmmm”. Anyway, it was a long day for me from 9:30am – 5pm start to finish. I honestly believe I could have gotten out an hour earlier if I didn’t have Ms. Snail has my assigned nurse.

Next stop was the pharmacy and that’s when I about lost it.  I had my anti-nausea meds (Zofran HCL 8 mg) called in by Ms. Slow Pants. I get to the pharmacy only to be told they didn’t have the prescription. Of course that didn’t fly with me which resulted in me having to call the on-call physician to straighten this shit out. I couldn’t get anyone at the infusion center although I had just left there. Magically, my prescription appears. It actually had been there all along, but they had my oncologist’s name spelled incorrectly and couldn’t find the doc associated with my meds.  I’m like “whatever, just fill it”. I THEN learn that my d#$* insurance requires a preauthorization to get this medicine.

Whoever in their life has heard of having to have a preauthorization for anti-nausea meds for a patient undergoing chemotherapy!!!???? I was livid and felt as though the oncology staff (including my doctor) should have known this. Why allow nurses to call in scripts that a patient can’t get? I did get the medicine and just paid cash for it ($47), but it would have been just my co-pay had this not happened. Of course, this makes for another phone call later this morning to my oncologist’s office AND insurance company about this crap.  All of this should be worked out BEFORE prescribing anything. I have to have this medicine after each treatment, what happened yesterday was totally unacceptable. I know stuff happens, but good grief people! 

Overall, I’m doing okay. Had some soup and half of a baked potato for dinner when I got home along with a stool softner. My parents came and took me to my first chemo session, which was nice to have my A-team there. My goal for the rest of this week is to rest, eat, and just see how this goes. Water, water, water is my mantra---I was going to the potty so much yesterday and again early this morning. It’s annoying, but hey---if they say drink, I’m drinking.

Hope that helped some just as a first day overview. I’ll continue to pop in and share other SE’s as the days pass.

Peace,

--S

Skigirl - LOL at "go get 'em." 

Zorina - what an exciting day you've had thus far and I agree with you (and Tom Petty ) re: the waiting being the hardest part!

Ciao belle!

nellas: I’m glad to hear you’re feeling okay now, but I sure hope you get a different nurse next time. I’m not voting for Ms. Rabbit, but maybe I nice Ms. Labrodor Retriever would be good. You know: lots of energy and always eager to help. But no shedding. No. And no slobber.

Zorina: Hot dog! That is a big celebration day! You might have to keep celebrating tomorrow for good measure.

skimommi: I have no answers for you, but I’ll ask my MO tomorrow. In the meantime, can I just say how much I LOVE that you’re here? I can? Good. I LOVE that you’re here!

Deb (Amrdbit) and Kristin (MamaK), I hope everything went well today. And how about you, Fighter? Did you get some scan results today from your MO? Any word yet on when you'll be starting? Sending good thoughts your way.

Sheryl, Lauren, carla, and hope (wow—big day tomorrow!), here’s hoping the service is speedy and the bartenders good-looking when you hit happy hour tomorrow!

Ci vediamo, belle!