April/May 2012 Chemo hang out

Hi Tweety.  Yes, I have had thrush both rounds.  Is your throat and/or tongue white or off color?  It's pretty likely to be thrush. The chemo causes your white blood cells to go down, and so you end up with infections easier, like thrush (it's a fungal infection).  They have a prescription mouthwash called Nystatin that will fix it pretty readily, so you may want to call your onc about this.  I hope it gets better soon! 

I got my second shot of Nuprogen today.I got my first one last friday. I am doing really good so far. My hips kinda ached yesterday afternoon, so I took 2 extra strength tylenol and within an hour I was feeling so much better. Hopefully it will bring my white blood cell count up.

What are ya'll talking about when you say "steroid crash"? Does everyone have the crash, or does it basically depend on the person? I keep hearing from my oncologist "Everyone is different". 

Hope everyone had a wonderful Mother's Day yesterday! I go for my 2nd Chemo treatment Adrianmycin and Cytoxan on the 25th.

Thanks for the hair advice ladies. I'm 11 days past first TC. I'm having my hairdresser cut mine short short tomorrow. I can't stand waiting until it starts to fall out to do it. I have clippers & guards so if I need to buzz it from there, I'll be good. Going to have her trim up this wig too. I don't know if I can actually bring myself to wear it. More of a ballcap type girl.

I ordered a couple of Buff's today. They look like they'd be pretty nice for summer.

Hope the stomach gets to feeling better sandik!

Does it make a difference whether you get the infusion in a port or an IV in your arm? Should have the same reaction no matter where you get it right? Just a question I thought I'd ask.

@Husker - I'm 7 days past TC x1 so right behind you! just starting the head wear ordering but I'm not thinking wigs either.  Just can't imagine it in the summer heat.  so far I've got some scarves and a couple of hats in a "shopping cart".

Slak - you are correct - I think neuropathy usually happens more around 200 mg/day...I think - it's been a while since I read about it.  And I too had read 100 mg is what is recommended for prevention of CIPN.  So I was quite surprised when 100 mg actually gave me symptoms.  Just goes to show our bodies have a mind of their own...and also why it seems we all have varying reactions to chemo!!!  

I'd have to go back and read (and I planned to when I got closer to finishing) the trial in detail again, but I wanna say the total time to take acetyl-l-carnitine was 6 months (including chemo) - so that would be 2 or 3 months post.  Eeeeks that seems like a long time.  I can't even keep it up 100% during chemo due to my sensitive tummy, so I doubt my stomach would handle that.  What is really scary is I just read a post (on a different thread) by someone that they developed neuropathy 1 month AFTER chemo was done (I don't think she had any sx during, but not sure).  That freaks me out, but what are ya gonna do?  Just makes me want to make sure I take as much of the supplements as I can tolerate during and after for a few months.  

So far I am free of any new long-lasting neuropathy symptoms.  I've had a few "zings" of tingling in my left hand and also my L foot (the one that already has some neuropathy that I have achieved control of)...but this was just for a few hours here and there and then it went away.

I don't know if you are on any platinum drugs, but they cause "coasting" sx - the neuropathy can get worse after chemo for several months.  I'm on carboplatin, so I will be on the lookout for that and am thus extra motivated to do supplements afterwards, if tolerated.  Maybe that is what happened to the person I mentioned earlier.  I don't know though.   

Sandik, I have gone through the same thing recovering from chemo. When my period of no appetite passed I became an eating machine. I also dropped quite a bit of weight. Glad you are packing lunch which sounds like you are successfully working during treatment.

I had a horrible first A/C and a much better second one. The main difference I think was keeping my stomach full. I even drank boost plus, although it does not really agree with me, because it was recommended by other patients as something to drink during chemo to avoid nausea afterwards. Fingers crossed I plan to do the same routine next time.

jjames76- surely you can call your onco if you have problems at night or on the weekends???? 

Jjames, we are here for you! So glad the puppies get to stay!,

Maria,

I am working through. Im a photographer and work for myself (well me and my partner) so, Ive been scheduling around treatments.

Pets/critters - it's what keeps me going and positive!  Currently, 3 horses (2 of which are rescues) I'm a co-founder of a horse rescue here in Texas, although now semi-retired and not as active as I was.  10 cats, 4 dogs, 4 goats, 4 chickens/1 roo/ 1 duck and hummingbird feeders/bird feeders everywhere.  I have to keep going for the critters who depend on me and my full time job which feeds us all!

Get my port tomorrow so somewhat stressed, getting ready to have  a small scoop of some just out of the oven cherry/berry pie and a small scoop of vanilla ice cream, bottle of water, xanax and hit the hay (bed).

I imagine when the time comes on the hair thing, my daughter will shave my head with the horse clippers:)  That's what she used on her own when she had BC and her hair started coming out.

Night all, catch back up in a day or two.  

Fierro6- So sorry that your insurance is preventing you from participating in the Herceptin clinical trial that I'm in (B-47).  You might ask your onco to call your insurance to appeal their decision.  Have patience with the drain situation.  It's doing it's job and allowing you time to heal.  Maybe by the time it's ready to come out, your oncologist will find a way to get your insurance to cover the administration of the Herceptin.  I though true negatives HER2's were (0)'s and (+1)'s.  I didn't get the impression that a (+2) was considered negative also.  Feel better soon!!!! HUGS!!!!

Wow rgina! Jealous of all your critters. Cant wait to get a horse again!



Fierro, its that dang drain jaxson bringing you down. I hated them to, i knew i wouldnt be myself a long time post surgery and treatment...but getting those dang drains out i started to feel so much better right away. Hang in there jaxson cant hang around forever.

jjames76 - keep drinking lots of water day 2 and even day 3.  Although I think most of the chemo is out of your system (mostly in the first 12 hours), I feel like it helps clean anything else that may be lingering around.  I think it also may help with your digestion - keeps you less likely from getting constipated, and if you get diarrhea, it keeps you hydrated.  I have no evidence for this, just my gut feeling.  My other tip for early on is to take sleeping pills if you can't sleep due to steroids or symptoms.  sleep is very healing.  And lastly, take your antinausea meds on schedule, even if you don't have symptoms.  It is much easier to prevent nausea than it is to treat it once it occurs.

Fierro6 -  There are two tests for HER2.  Have you had both?  They are:

IHC:The scoring for an IHC test is from 0 to 3+.

* Zero is HER2 negative
* 1+ is considered HER2 negative
* 2+ is considered a borderline or equivocal result  (sounds like this is what you are)
* 3+ is HER2 positive

 A borderline ICH test should be followed by a FISH test (AS IN YOUR CASE)

 FISH test:

Tumor samples with an average HER2 gene/chromosome ratio of > = 2 to 1 are considered HER2+.   

If you have not had the FISH test done, I would absolutely insist it be done.  You are borderline according to the ICH test, you need to find out for sure if you are HER2+.  This is critical to you getting the proper treatment.  If your FISH comes back positive, I believe your insurance will have to pay for the Herceptin.

For more information:  HER2 Testing for Breast Cancer Patients 

I'm so sorry you have this additional stress!  HUGS to you and dang I hope Jackson goes soon.  I absolutely hated my drains!