Sept 2012 chemo

patriciahurtado

Neulasta I hate u!!!!!!!!!! But I'll be fine soon

jojo2373

Patricia, it does get better! Are you taking anything for the aches?

kidsandlabs

I take taxol every three weeks, but I just had my first round of chemo. So I don't think I am much help to you. I get it along with carboplatin.

Amy4978

Englisrose..... Amazing post I needed that it def grounded me Thank you!

Toastiecat

Hi Jojo,

 I'm one of the weekly Taxol people. Most people I talk to on ACT get the biweekly Taxol, I think.

I'm also getting Herceptin...I wonder if that's part of what makes the switch from weekly to biweekly?

kidsandlabs

Patricia, I AGREE!

Cindi74

I think I found a study somewhere that said once a week with Taxol is better than once every three  weeks.  Maybe the two week is a compromise.  I just googled  "Breast cancer Taxol results"  which I start in December.  I will have twelve weeks, once a week. 

I don't think Dr.s know what things cost.  There was a special on health care costs which I have on the DVR to watch when my husband is not trying to sleep.  Am anxious to see it.  Looked at one hospital bill this afternoon.  I think medicare was paying about 1/10 of billed cost on one thing.  My husband is retired military so tri care will pick up some.

I am an economist.  The whole system is crazy.  The hospitals and Drs. bill say   $1000.  (I am making up these numbers and the percentages may be all off so don't quote me.  Will check a bill when not so tired.)  Someone poor who walked in with no insurance may pay nothing.  They have nothing, thus it won't do anygood to sue them.  They may work at Golden Corral where the pay is low and no benefits.  They won't get preventive care, only emergency room.  My oncologist said when she worked for big hospital in Manahatan as a resident, they would get the chemo, but not the antinausea drugs.  They pay nothing and their employers pay nothing.

So, the hospitals and doctors raise their charge to everyone to cover the nopays.  Then medicare, tricare payments are set by law through congress.  They bargain with the hospitals and tell the Doctors what they will pay and won't let the providers charge more.  So, the providers raise their prices, and sometimes prescribe more services to raise their fees.

The insurance companies also bargain.

So the poor schumk who walks in with no insurance but some assets, savings, investments, he pays at the maximum until he or she runs out of money.  It's crazy.

People have been told lots of lies about Obamacare.  Yes, it is too long and complicated.  Yes, the drug companies and hospitals and insurance companies all had stuff they wanted that may make it more expensive than it could be, BUT, it pulls almost everyone into the system.  Everyone will have to have insurance.  Doctors bills, hospital bills will all have to be uniform so that they can be compared (am not totally sure on this)  Markets should be set up in every state where customers can shop and compare.  If one can't afford insurance, they get help according to a formula.  No denial of coverage because of pre existing conditions. 

Then, it should become possible to compare costs of treatments and to see what works.

We spend way too much on health care, but have outcomes worse than countries that spend a lot less.  Measurable outcomes like life expectancy, infant mortality, etc.

Something has to be done because we can't afford the current system. 

sherbab

I have 2 more AC treatments and then will go to Taxol.  I will be on the weekly for 12 weeks, same as you Cindi.

Patricia - one week to the day after my Neulasta shot I had horible lower back pains called my onco and they told me the next time I had the shot, one week later I could plan for the same results and I should make sure to hydrate well and take Claritin and Aleve before I went to bed.  My horrible symptoms came at night and they said they usually form a pattern.  So after the 2nd shot I did what they told me and I had no issues.  Now I know everyone is different and thankfully the Claritin is working well for me but I thought I would pass this along becasue I ddin't have to find out for a 2nd time if it truly was a pattern...that is one area I don't want to be an expert in!

Amy4978

Jojo...did you ever look into grants they offer to cover the extra cost of the neulasta shot? At the cancer center I go to they have a special social worker who specializes in insuance and he directed me in the right direction but two of the places I can recal off the top of my head is cancercare and patient advocate founation (not sure if its a states thing or just michigan) but he also told me that the hospital its self offers a financial aid program that would help cover costs if I qualify. Hope this next round goes okay for you!

Amy4978

I am living on the edge loving a glass or two of wine lol......

anyone else using latisse to try and save the brows and lashes? My mom is a breast cancer survivor but used it after chemo... i had my doc write me a script for it today and will be using it while I still have both in hopes it will keep them. just wondering what your results might be. 

Only a few more days till round 3 and I'm ready! gonna nest for the nest few days and get ready to take this on and win.... only 2 more treatments of dense dose A/C then the taxol weekly will become my new firend along with herceptin... 

Hoping I handle taxol as well as the hard stuff.. 

I chatted with a homeopathic doc today and she set me up with cranberry pills for my kidneys to help flush out the toxic stuff and also put me on green zone which is full of all sorts of good greens (grass and grain) 

Gonna take this on 4 ways good ole fashion chemicals, healthy eating,  a bit of homeopathic goods, and prayer!

THIS CANCER HAS NO CHANCE!

Hugs to all of you... 

Mariposa123

Hi all:-)

  Thanks Cindi for your post- couldn't be said better.  I am feeling a bit more human, which is nice.  I wanted to share that on my latest blog post I linked to a template I made to record body symptoms post chemo.  I am an art therapist, so it is kind of a visual tracking type of thing - but thought I would share it.  I have been doing it and plan on bringing it to my oncologist at our next visit.  http://breastcancerartandme.blogspot.com/2012/09/9-days-post-chemo.html

  Tonight my stupid port is hurting again.  It seems to hurt right where the catheter thing ends in the middle of my chest.  I don't know if it moves funny or what- but it completely is irritating.  Anyone else have this problem?  Any magic advice?

  Only other complaint is constipation which doesn't seem to go away.  Oh well.  I guess it could be worse.

Hope everyone is able to get some sleep tonight and has pleasant dreams.  One day we should share crazy chemo induced dreams!  I have had some pretty odd ones!

Waitingforthenextstep

Mariposa123

I am three days after my first chemo and am starting to feel a little bit better too. The past 3 days I didn't feel like myself. Just a draggy, leaden feeling..tinged with nauseaousness.  My port bothers me too, it is on my left side and it feel like it lays right on my bones. I wonder if this has anything to do with all the pain when the nurse did the stick. Will see MO next wk, definitely get some numbing agent before next chemo.  Hope we all feel better and enjoy the weekend. I will be praying for all of us!

Melrosemelrose

Amy4978- I have an unfilled prescription for Latisse.  I'm almost 8 weeks PFC.  My eyebrows began to fall out during my last rounds of chemo (we are on a different regimen) and post chemo they were pretty sparse.  They really started growing back in 3 weeks after my final chemo.  It's like they got the message that chemotime was over.  My bottom eye lashes also fell out but have already grown back in.  My top eyelashes are doing okay but I do expect them to fall out.  The eyebrows and eyelashes have a different growth pattern than head hair does.  I opted not to use the Latisse because of the expense and also because of the possible darkening of the skin around the eye area.

Mariposa- I used to get this weird feeling that I could feel my port in my chest.  This started after the port got put to use.  (There was a 6 week period between the port placement and first use; my port was placed during my UMX).  I was told that it was not unusual; however, if you don't think it's right, get it checked out.  Sorry you are on the "C" train.  You may want to up the fluids, eat more high fiber bulk foods(ie wheat bran)/veggies/fruits, drink apple juice/prune juice, eat some prunes. (While on chemo, I ate almost every morning a combo of rolled oats & cream of wheat, wheat bran sprinkled on top, banana and blueberries plus organic milk which seemed to help). You may also want to take an OTC med to help (Colace/Senkot).. Just make sure you clear the OTC med with your onco. Hope you feel better soon!!!!

InspiredbyDolce

Mariposa 123:

I too had pain with the stick.  To me, it felt like they were putting a fishing hook in me.  I did the numbing cream ahead of time, and could still feel that poke.  My Nurse had me inhale in as she inserted needle, maybe that helped a little. The numbing cream is called Lidocaine/Prilocaine cream.  That's the generic label.  

My port also felt very tight.  Mine was on the right, and I did not like having to look over my left shoulder while driving, as I would get the 'tug' sensation.  My port has been out since April and I still have the tug.  It must be from my breast implants instead, must be a muscle that is causing it.  I've started trying to do arm movement exercises at the gym to get that area to loosen up.

EnglishRose75

Feeling invincible today! "Working from home", and doing lots of work but not the kind I'm being paid for (naughty)! Three loads of laundry done, lawn mowed, three large black bags of old clothes to go the the charity shop.  What next...

Great post, Cindi.  Really interesting. Thank you.

Is anyone on here doing the every three weeks Taxol or Taxotere schedule?

I hope everyone is doing fine today.

Cocobean

Just a quick tip on the numbing cream for the port....one of the nurses told me to put it on at least 2 hours before getting stuck, layer it on around the port area like you are frosting a cupcake, and cover it with press and seal. I did this for my first round of chemo and literally barely felt a thing. I wasn't able to do the 2 hour time frame when I had to go in for I.V. fluids, only about 45 minutes beforehand and definitely felt the pinch.



Also is anyone having issues with taste? Everything tastes like dirt. Does this dissapate over time or just get worse? Thanks.



Hope everyone is doing ok today.

Waitingforthenextstep

Coco

Taste has changed.  I love coffee and I take a few sips and don't want the rest.  Food too,  I really want to eat it, take a bite or two and just feel I can't eat the rest.  The easiest for me is Kashi blueberry cereal with 1% milk in the morning.  At least I can finish it.  It's weird, like when you are pregnant, suddenly things I loved don't appeal to me anymore.  Really gonna miss my coffee!

InspiredbyDolce

So this message is to a Member who I can't PM right now - my PM says over the limit but the day just started?:

The Magic Tea is:  Organic Smooth Move by Traditional Medicinals. I have found it at Fry's Grocery Stores and I think Wal-Mart.  

To all ladies:  If you are looking for something after surgery or during chemo to keep things uh .... regulated ... without cramps, I recommend this tea.  I drink it hot with a bit of Sugar in The Raw.  It is really yummy - and 1 cup a day worked great for me.  I actually only had to do 1 cup every other day, but drank it each day as it was quite yummy.

Take care ladies - have a nice day!

Toastiecat

I'm having the metallic taste thing, along with mild mouth sores. Poland spring water, which I drink all the time from the water cooler at work, is disgusting. It tastes like pennies now! I'm having my second treatment today, not sure if that's going to get better or worse.

jojo2373

Good morning sisters, waiting in the bgc! The poison has been ordered. updates to follow!

patriciahurtado

Jo we got this!!!!!!!!!!!.....no SE .........we got it Girllll.....Rock that BGC

kidsandlabs

From bone and joint pains to every muscle in my body hurting.

patriciahurtado

Kidsandlabs...did you take claritine in the morning  and ibuprofen....every 6 hours...but contact you onco

jojo2373

Drips done, sleepy this time. Possibly the ativan i took at 8am? Lol.



My wbc great, mildly anemic, but just barely. And OHHHHH the tumor shrank even more. Almost 50% gone...so happy.

patriciahurtado

Jo...i told you we got this.........drink lots of fluids .......

Mariposa123

Jojo:  that is so awesome!!! Almost 50% gone!  That is worth a nap and then a celebration for sure:-) 

Kidsandlabs:  I am so sorry you aren't feeling well.  I just keep reminding myself of what all of the other ladies say - this is temporary.  You are going to feel better.  I think Patrcia is right though about contacting your onco.

Inspired:  As soon as I take a shower and get my little boy ready, we are off to the store to get some Magic Tea!  

Toastiecat:  I also have a horrible taste in my mouth- and everything I liked eating prior to chemo tastes bad.  Oh well.

Hope everyone has a nice Friday:-)  I have been on disability now for three weeks.  Feels so weird not to be working.  

kidsandlabs

Jo Jo, I am so happy for you.

InspiredbyDolce

Hi Ladies,

More tips to share with you: 

You probably already know this, but in case you don't .... try eating with plastic utensils, drink from disposable coffee cups and it might help you with the metallic taste. And saves on having to rinse dishes for the dishwasher!  ) If you prefer your drinks (like Diet Coke/Coke in a can - then use a straw).

For food, I sometimes had spicy items, which helped get the taste buds revved up.  

I remember my chicken fajitas used to taste bland during treatment, but I used cayenne pepper to spice it up.

And 100% Natural Ginger Ale from Whole Foods was a treat during the day.  That was really sweet and I could taste it pretty well.

And you probably already know this, but drink lots of water the first 48 hours of treatment.  Important to get the toxins out so they don't linger around other organs.  I was advised minimum of 64 ounces of water.  If you can't get it down, try the Pediolyte Frozen Flavored Pops.  They are an excellent source of electrolytes and will help bridge the gap on trying to get all the water and fluids down.  They taste about a 7 on a scale of 1 - 10.  Not too bad ... but definitely do-able!

I didn't quite get to 64 ounces on Days 1 and Day 2, so I would try hard to reach 64 on the 3rd day.  

Also, I never got mouth sores with this formula - and it might help with your taste buds:

Start with 1 16 oz bottle of water, add to that 1/2 teaspoon baking soda, 1/2 teaspooon salt - shake well.  Then a few times a day rinse your mouth with that.  Make a new fresh bottle each morning and it will last you throughout the day. 

Also, suck on ice during the chemo treatment. That will also prevent mouth sores.  I did both.

Wishing you all a great day today!  )

whenlifegivesyoulemons

Happy Friday all,

Round 4 starting up, finally.  Somehow they managed to lose my bloodwork.  Yes, you heard me right.  They LOST 4 vials of blood.  So, hours later, I am finally starting the magic potion.  Commence cancer scrubbing bubbles!  

Jojo - Big congratulations on such impressive results!  That's AMAZING.  Hope it helps to balance out all that chemo unpleasantness.

Toastiecat - Hope you're feeling good after your magic potion.  Looks like you, me and Jojo are on the same schedule.  

To all the beautiful baldies out there - my hair is officially jumping ship.  I'll be joining the club shortly.  Mixed feelings, of course, but kinda ready to be done with it and move on.  

Foreverchanged72612

@Jojo and Donna: First of all, can I just say that you two are rocking the shaved look?!? Second, I am taking weekly Taxol and Herceptin. My oncologist thought that a smaller dose every week would be more effective - but you know what? He didn't say more effective than what...I don't know. I assumed he had meant more effective than once every three weeks. And the fact that I'm on Herceptin, too, maybe is why it is weekly. I didn't know that some treatments of Taxol are every 2 weeks. I had my first visit with the oncologist after starting chemo yesterday. He thinks my tumour may have shrunk 1-2cm!!! Plus, he can't feel the lump in my lymph node anymore. And that's after three weeks of treatment!!! I was very, very excited to hear that. In terms of side effects, I have my treatments Mondays and Wednesdays have typically been my "bad" days but not unmanageable - I feel a little light headed, jittery and wired but tired all day. No nausea. I see Melrose mentioning the Decadron steroid. I get an extra dosage of that because I had an allergic reaction to the Taxol the first time. That makes it really hard for me to sleep and the benadryl makes me extra jittery so my doctor prescribed Zopiclone. I take half a pill Monday night after treatment, then the other half Tuesday night and that's it. By Wednesday the steroids seem to be out of my system and I go back to sleeping on my own.