April/May 2012 Chemo hang out

Tweetyb422

Anyone have thrush? Now think my sore throat maybe thrush....gotta love all these side effects...

dancetrancer

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! 

sandik

Tweety,

I thought I was getting it my last round of chemo. I did the baking soda/salt/water rinse. I was doing it after every meal plus biotene. It took care of it in 2 days. Got rid of my mouth sores too.



Melrose,

Not really sure what it is. Its almost like Im hungry. But I just ate.

Pauletta

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.

sandik

Pauletta,

They give mr my steroids and anti nausea meds all in my port at infusion time. They last 3 days. Once they start wearing off, I get really really tired. First infusion I couldn't even open my eyes for more than 10 minutes. This time I was able to stay awake longer, but I feel like Im more tired. I spent almoat 2 days sleeping this time.

Husker123

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!

Melrosemelrose

Sandik- Interesting that your tummy feel empty--- nibble on some crackers.... that might help... a bowl of mashed potatoes/rice may fill you up. too.

Husker123 - i went to an old thread about when the hair starts falling out with Taxotere/Cytoxan regimen--- a majority of them said around day 14, the hairs starting coming out and the scalp got a little tender.  Of course, I read this after mine had already started coming out on Day 14 after my first round.  My scalp actually feels better today and less hair coming out.  However, the #2 treatment I'm getting tomorrow may finish my hair off!!!  Time for the caps, hats and Buffs!!!!

Pauletta

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.

ahdjdbcjdjdbkf

Hi Guys, I'm just about a month ahead of where you are. I got my port and have had two treatments through my port. Today was the day I shaved my head and now I'm facing months of head wraps. I'm pretty sure I won't wear a wig in the Florida summer and I'm kind of obsessed with being clean. I haven't been able to work since before my mastectomy. I'm planning to get back to work part-time mid-treatment because I need to keep my job, health insurance, roof over my head, food, transportation...life has totally become a lot more basic. I am wishing everyone well. I did MUCH better with my second chemo than my first too. I'm hoping the trend continues. My shaky hands are getting to me! I can't pluck my brows!

lsharvey822

@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

Dancetracer - Good to know about some needing to reduce the Vit B6 from 100 mg to 50 mg.  My MO recommended 100 mg and I thought the neuropathy was caused at much higher doses, so I went with her recommendation.  So far I'm good with no neuropathy...I hope you are too!  I figured I would take it until a couple weeks after the last chemo, but I haven't asked my MO...did you come up with an end date based on your research?  I'd certainly like to stop taking all these medicines/supplements as soon as possible.

dancetrancer

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 think I was just hungry. I have finally filled the buda! Haha I had toast this morning. Then a banana when I got to work. Then mashed potatoes with green beans. Then a salad. Then some pretzels. When I got home I was starving. My son made me chicken and mac n cheese. I just finished off a strawberry sundae and I think Im finally full! Holy smokes! I feel like Im eating so much! Im still losing weight though. I am not complaining. I could stand to lose quite a bit. I guess I'll have to pack double lunch tomorrow!

ahdjdbcjdjdbkf

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.

Melrosemelrose

Sandik--- Remember what I told you--- a tummy with food is a happy tummy.  You can worry about the losing excess poundage later.....

ahdjdbcjdjdbkf

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

Just finished first tch tx....thanks for disspelling d boyfriends fears of the dogs in the house...he conceded :-)

Scared for when and how the ses will begin to show themselves. Drank alot of water and ate several small protein rich meals. Any more advice? My cancer center doesnt have after hours answering service....im on my own nights and weekends unless i visit er...ugh

P.s. They almost sent me home today because no one could find my baseline echo cardiogram report....its was resolved thank goodness, but the daily drama seems as bad as the treatment at times

Melrosemelrose

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

lsharvey822

OMG Jjames!  I thought my center was bad!  no after hours!  well don't worry because believe me you'll learn more from these ladies then the docs will tell you anyway! 

sandik

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.

Fierro6

I just need to moan and complain for a minute, and then I'll shut up and move on.  That's how I roll.

I cannot take place in the clinical trial, because my insurance will not pay for administration for Herceptin for someone who is +2 (technically HER2-.)  Even though the drug is paid for by the trial, and the administration would happen at the same time as other drugs, it ain't happenin'.  

Stupid Jaxson (our newest family member...my JP drain) appears to have plans to stick around longer than 4 weeks.  The other was gone in 10 days, this one is here to stay.  I've gotten from triple digits to double in the past 7 days, but the output (53cc) has been identical for the past 2 days.  Wednesday will be four weeks.

I'm supposed to start chemo next Tuesday, and that will NOT happen with a drain in place.  The echo did not give them everything they needed, so an EKG has been added to next Tuesday's regimin.  

So many people on here have things SO much worse than I do.  I am nothing but a big baby for complaining.  I have a wonderful family who does whatever they can (and then some) to help take care of me.  I have two 60+ pound mutts at my feet, wondering why mom's crying, and wanting to fix it.  I have the best-case scenario for someone with cancer.  Honest.  I just needed to vent while I cry.

Thanks.  I am done now.  Done and thankful to have found this community.

rgina

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.  

jjames76

Disregard my complaint about after hours call center till i verify...i did a test run over the weekend and there was no call center pick up....i asked the girl at the front desk and she said they must have forgotten to switch it over...then i asked my onc nurse and she said there was no after hours...maybe she didnt understand my question?...i just called at a bit after 7 pm and there was a pick up....shwew...i go in on friday for blood work...would it be rude to remind them to switch over for the weekend? Ha if i wasnt laughing right now id be crying...

Melrosemelrose

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!!!!

Melrosemelrose

jjames76- Not rude to ask them what happens if they forget to turn on the after hours telephone..... I'm sure you weren't the only one who tried reaching them on the weekend and at night.  You may ask them is there someone you can call if no one picks up the after hours line.

jjames76

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.

sandik

I don't know anything about drains except Im glad I didn't have any! I did have to go back in for a re-excision right when I thought Id be starting chemo. I remember thinking that I would be way behind everyone here. I was really frustrated that I wasn't starting when I thought I would be. Everything will be straightened out and you will be on your way before you know it! Big hugs! Hang in there!

Stacie

Fierro--I have an ideal scenario for a person doing chemo, save for a few stressful family members we think are in denial. But I still have CANCER. My MO says I am allowed to have a few pity parties, just not any for someone else... Don't compare with others to decide what you need. Get that from inside of YOU. We all on the same journey taking different paths.

vballmom

Fierro, I'm sorry Jaxson is still hanging around.  My oncologist told me chemo needs to happen within 85 days of the last surgery.  I was worried because I had a lumpectomy, a re-excision AND then a mastectomy.  It seems like ages ago that I found this lump and really do want to keep my treatment moving.  Who would think we'd be so anxious to have chemo, right?  I am seeing the BS tomorrow for my three week follow-up.  Hopefully I will get the all-clear.

 

dancetrancer

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!