Starting Chemo in April 2014

MommyQ, I just finished chemo, but I'm still lurking here.  My tongue turned whitish/gray for about 5 days after each of my dense dose Taxol treatments.  I called it "dead tongue".  I knew it wasn't thrush. I asked the MO, his assistant, and 2 chemo nurses about it and none of them had ever heard of or seen that!  I'm so glad I am not the only one.  I took a picture this time to show my MO at the next appointment.  DD Taxol takes 3 hours to drip, so sucking on ice would have been hard that long, so I just lived with it.  I had no pain or taste changes, just an ugly gray tongue for a few days!

ladies, I finished my AC and Taxol 20 week ordeal on Thursday. My hair started to grow about 4 weeks ago and it's good to have the chemo behind me. I am here to give you encouragement and to let you know you WILL get through this! 

I also want to share that when  I was bald, I started 'bedazzling' my head. I just couldn't be comfortable in a wig and I preferred to go topless, but was a bit shy about it. It was SO wonderful to decorate my head and have people stop me to chat instead of give me that sympathetic half-smile and a nod. I could not get through a shopping area or public place without being stopped or complimented . More importantly, I was having wonderful conversations with people about their stories, their cancer experience. It made me proud and confident.

Anyway, through lots of encouragement, I launched my own product and I call it Sassy Head. I only have one design now, but I REALLY need some people to give it a test spin for me. It works wonderfully on my skin ( I could sleep in mine and get 2-3 days use) but everyone is different.

I have a very simple website (not pretty, but it works) if you would like to try one out. I am selling these for $8.00, but if you use the dropdown next to word Standard and select BCO, it will give you a price of just $2.00 (plus 3.00 for shipping).

Below are some pics. The first group was my head when I was bedazzling, and the second is my available design. I plan to do additional designs, including a pink ribbon and designs for children. Your suggestions are welcome!

www.sassyhead.com

hi all

Appreciate your kind words!  So today was round 3 of FEC and my last one. Next 3 will be taxotere and herceptin

Today was a bit difficult. Felt nausous for most of the infusion and still feel off now. I've taken my anti nausea pills so no vomiting. Dry mouth is starting already. Ugh!  I've noticed that I've had some tingling and numbing in my right foot and hand. Weird!  Comes and goes

Hoping that it doesn't get worse then this!!

Let's go rangers!

1-0 now for the good guys. Life is good!!  Lol

clarrn: Woo hoo, another chair buddy for today! I hope yours went well. Mine went well, although my TEs got uncomfortable during the Taxotere infusion. Don't know why. Well played chemo card with the cop, BTW!

Footballnut: Congrats on finishing your round 3 of FEC! Hope you feel better soon.

Macintx: I too am glad I'm not the only one with this weird white-tongue-not-thrush thing going on! My T&C is 1.5 hours long, so I was able to manage keeping ice in my mouth. However, all that melted ice meant a bathroom pit stop between the T & C. I'll let you know if this keeps the white tongue away in a couple of days. You're lucky you didn't experience any taste changes. 

MommyQ - I get the tightness in the chest muscles around my TE's after my infusions also.  It usually lasts a few days.  I don't know your feelings on this but my PS gave me a prescription for valium to help with the muscle issues.  So on those days I take one before bed and it really seems to help with that night and the next day - just enough to make it mostly unnoticiable.  He gave me a prescription for 60 pills right after my surgery and I still have enough left that I could take one everyday for 3 weeks - so you can see I don't use them every night.  They also seem to help take the edge off when I am taking the pre chemo steroids.  My MO ok'd this usage. 

Makelemonade - how low did you hemo go before they decided to transfuse you?  My red and hemo did not really recover between treatments this time - so I started off a bit low - not transfusion low - but low enough that I have more fatigue.  They told me that fluids may also help with the exhaustion - I might ask if I can go in for one Friday - maybe help me feel a little better this weekend.  

I go today at 330 for my CT scan to look at my liver and mid- back - hope they see nothing - or if they see something it is just a normal bad thing not a cancer bad thing.   ughhh stress.

Right there with you, Linda.

Footballnut should be happy with her Rangers.

*sigh* Week 1 - try to prevent constipation. Week 2 - like clockwork, C is solved and D starts ... Trying some Immodium now.  I have never taken so many medications in my life.

Happy Thursday, everyone!  

Linda - Sending you good luck.  Do they call you right away or do you have to wait through the weekend?  We are here for you -  listen, rejoice, hitch- whatever you want.

SharonDe - I know.  My nightstand is so full I feel like an old lady.  Wait, I am!!

thanks for all the positive thoughts I am hoping and praying that this is just one of those SE from chemo - all my test prior to starting chemo were normal so I have that to hang on to.  I don't know when I will get the results I am gonna try to get the radiologist to give me hints LOL - doubt he will but we will see - maybe if I wear fake eyelashes and bat them at him LOL

I had bad C first infusion but no D - then lesser C with 2nd infusion but then had 3 days of D.  So far it seems as if I am going to skip the C for the third infusion or at least be minimal as I had a small bowel movement this am.  So lets see if I can skip the D too!   We always seem to go to these conversations LOL - but where else could we talk about this shit - pun intended!!  I did this for my second treatment and for this treatment and it may help with the C - but you got to be patient  Accupressure points for constipation

http://www.youtube.com/watch?v=F3OOdpJup-8

Yeah for the Rangers!!!

Linda505 - I was down to 7.3 on Tuesday when they said I HAD to have a transfusion.  2 weeks ago I was 8.3 and they were talking about it but I wanted to try to see if I could make it through the last cycle of A/C. MO said they usually like to do a transfusion if it gets to 8.0, but would let me go a bit lower due to my age (56). 7.3 wasn't considered a "bit lower". It only went up to 9.0 by the time of treatment last week.  I was anemic before I started chemo, so I guess that didn't help.

I didn't want to have it done, but felt worse yesterday morning than I did at blood work on Tuesday, so didn't fight it.  Everything was an effort that got my heart pounding through my chest.  

The nurse there told me I might end up having another one as I was so low.  The RBC don't bounce back like WBC as Neulasta doesn't affect them.  

Also ... Good luck with the scan!

Good Morning to all of you beautiful girls!  Hope everyone is able to enjoy a summer day, with NO SE's, or at least staying out if the Dark.

I had my first dd Taxol 8 days ago, and the one lasting SE is constipation.  I have never really experienced this, and I'm trying to figure out how to deal.  Anyone have a good remedy, besides the obvious prunes and fiber supplements/additives?  Something natural...or after a full week of feeling like this, I would consider ANY suggestion. Help!

I ended up getting a callback from my MO's office, insisting I had to do weekly blood work.  But, I ended up with a sweet gal who suggested I request a butterfly needle each time I go to the lab. She actually said many on staff there are stingy with those needles for some reason. Why, I don't know.  But the venipuncture went well, and now I know what to say to make that happen more often

Enjoy your day!

sennakot is natural and maybe a glycerin suppository,  yogurt helps some, if you can walk it helps but if nothing soon you might end up needing an enema.  Which is the last thing any of us want to go to the hospital for but you will feel better and its 100% natural.

Good Morning April Beauties! I love going back and looking through the photos on this thread, because we are a GORGEOUS group of women, you know? Not to toot my OWN horn or anything, but...TOOT! TOOT!

Linda - here with you all day today. Been PRAYING and PRAYING for you!

Nana - BOO on the head cold! I hope you feel better very, very soon, and get to enjoy some of the good days!

Swissmiss - I, too, have issues with blood work. The lab techs here are NOT certified to access the port, so all they have to use is my left arm. After bruise upon bruise, and then an idiot tech taking blood from a bruised vein and causing a whole heap of trouble, I was told by one very experienced lab tech to ALWAYS "order" a butterfly needle, and if the tech refuses, then ask for a different tech. Apparently the butterflies are more expensive (by mere cents), so some will be stingy with them, but I've found I get my way on this with little to no arguing.

Oh, and as to constipation, Senekot tea is helpful. Also bran crackers and muffins, Activia yogurt, and scads of water and gatorade. I find I deal with C the first few days following chemo, and then D for a few days after that. Although, this time around, those two side effects have been pretty mild. *crosses her fingers*

clarrn - *Love* the story about the speeding. I'm always telling my husband to "play the chemo card", especially while shopping for a vehicle. "It might even help if you take the kids and they cry a little," I said. HA!

Blueberry - Regarding SUVs, we're looking at the Honda Pilot very seriously. I test drove it last summer and LOVED it. The Highlander was nice too, but is really more of a 4-seater, given that the back row is virtually unusable unless you're a hobbit, and the middle seat in the second row is really more of an armrest. Clarrn - what are your thoughts on the Nissan Murano?

Today I woke up with the "burnt tongue" as well as burning ALL the way down my throat. Ugh. HOW does one EAT when it feels like you've poured scalding water down your esophagus? 

Have a great day Ladies! Thinking of you all!

Nita

Blueberry - to add onto what ColdinCanada said, my DIL has driven her Honda Pilot for 2 years and she has never had a bad word to say about it.  She just loves it.  The ride is very smooth, the interior is very ergonomically friendly, there have been no mechanical problems and it is very spacious.  We are often 7 when we are going out to dinner, etc. and no one ever complains about being uncomfortable (of course we are 7 adults so we would probably complain more ;-)  )  She has taken it on quite a few long trips and it is comfortable and quiet so that you don't have the road fatigue. 

Nana - have you ever tried a neti pot?  You do have to be careful to use sterile water and keep it clean.  Usually I just use tap water from our deep well but with the chemo and WBC's I am very careful to make sure I boil the water and renew every 24 hours.  I use plain, fine ground table salt.  I always do this when I have a head cold.  I never have to take OTC's or prescription pills and I never have trouble breathing.  My sinuses never hurt.  It sounds terrible but it is easy.  Just a thought.

Just home from my CT Scan - will not have the results til Monday ughhh - so a weekend of not knowing

linda.  That sucks!  I had my results back in 4 hours.   I would call docs office tomorrow to check....They may have only told you that rediculous turn around time.