Sept 2012 chemo

Well port still hurts, but it is getting better. I start my chemo Friday and I am ready. I think I am more worried about the nulasta shot. Does is cause a lot of bone pain? Why is everyone drinking green tea? Thanks about all of the info on melatonin, I am going to ask my doc about it. Should I take phenergan/compazine before chemo or after? Sorry I am just full of questions!

My oncologist cut my dosage by 20% today--same reason.  I told her I could just stay in and handle it but she said the cut shouldn't make a difference in outcomes.  Dosage is sort of standardized, I guess, and there is some give some way or the other she infered.  Furthermore, a friend sent a note on ginseng helping fatigue.  Talked about it with the oncologist and she was VERY enthusiastic.  Said I could probably buy it pure at a Chinese store, but none very close.   Tried to put  a copy in the the discussion here, but couldn't, but then discovered it is listed on the BC.org site and I hadn't read it.  Google  "American ginseng may ease treatment fatigue"  Note it said don't get the kind with ethanol.  We looked at a health food store run by Adventist here, and all had ethanol.  I just ordered capsules of the pure from Amazon.  should be here before my second A/C Wed. 

Wendy49,  Somewhere I read to keep a plastic bottle of water by the toilet you can aim a stream at the proper location to wash when peeing.  Use steril wipes to pat dry.  Supposed to dilute effects of toxins.  I did right after chemo for about four days.

Cindi74, I know you have been having a tough time with AC.  I'm glad your MO was able to reduce the dose for you and hopefully you will rebound quickly this time around.  I will ask about taking the ginseng.  The fatigue goes beyond being tired.  My first TC knocked me down so hard with fatigue, it took me 9 days to recover.  It took all I had to make it to work on day 10.  I did manage to make a full day at work on day 10.  I had hydration twice in a week, really did not help me either.  I'm 49 and I am use to running from 6:00 am to 11:00 pm daily.  The nurses and PA told me while I was getting hydration that a person like me, Type A, have a really hard time with the fatigue.  And by reading the posts here daily, I know you also are a busy lady too!  

Relative to the plastic bottle by the toilet, I will try that.  When I would go to the bathroom to pee, I could actually smell the chemicals.  After a few days, I had burn marks from where the toxins hit my bottom.  My MO  called in some cream to take away the chemical burn.  I may have a sensativity to the Cytoxan.

The strange thing is that all my blood is normal, but this being day 22 now, I still cannot work all day without feeling tired and then run errands in the evening.  So, the TC has made me quite anxious relative to how tired I am and that was only #1.  

Thanks for your input and I hope/pray with your 20% reduction in the dose that you now will have minimal side effects with AC.

Wendy, My only tough time was with the fatigue,  I had seen so many friends keep working, take care of children.  My daughter told me that one of the women in her large office she didn't think had missed a day of work.  Sooo, No nausea  or pain or other SE for 2 days--tired, watched a movie on day 3, late afternoon, day four after chemo day.  Collapse.  Effort to breathe.  Husband thought I was having a heart attack.  Same two more days.  Got up to go to Cancer Clinic three days, and then began to recover on day 10.  No way i could have gone to work.  And yes,  I am very active normally.  i manage some real estate, and mow 10 acres once a month.  Sooo very frustrating.  i feel I have adjusted.  Have made plans to be able to do nothing as needed coming time.  i can do it if it is the same as last time or even a little worse.  i just have to get my mind adjusted--and I have.  Dr, said today i am doing great.  I had on my glamerous wig, and looked good today after using some of the look good makeup.  Oh yes, weird, head still has a lot of hair although it is beginning to fallout fast, but my lower eyelashes are gone.  Never had a lot, but that surprised me.  

HI All.  Just dropped by to see how everyone is doing.  I am officially 3 months PFC and want you all to know there is a light at the end of the tunnel.  I was able to enjoy my son's wedding on 9/15, a week after completing my last radiation treatment.  Today, I had my three-week post rad checkup with the RO and we "broke" up.  I am done with him!  Yeah!  

Wendy:  Why do you need 5 treatments?  Seems odd.  PM dancetrancer re:  4 chemo treatments.  Sorry you aren't feeling well.  Sending ((hugs)) your way!  

As far as the hair:  it was the most traumatizing thing for me throughout this journey.  My avatar shows my hair 2 weeks ago. It has grown substantially since then and will need it trimmed for the second time since PFC.  Just trying to help you all get through this.... 

Donna....from your facebook picture pic the image and copy the the URL

 

Good Evening ladies, well it is almost 12.00 and I am wide awake . I find that since I have started chemo I am up most of the night and sleep so little. Is anyone else having that problem? I also have notice that I am snappy a little . I feel horrible after I snap at my husband or the kids but I think all the changes are just getting to me.

@kidsandlabs Welcome my fellow triple negative sister. I'm so sorry you had such a restless night. Is Adivan one of your nausea meds? It is also an anti-anxiety med. I find it works well at night and helps to make me sleep. I was still getting up two or three times a night. But after 3 rounds I am finally getting 6-7 straight hours at night. Hang in there girl.

kidsandlabs- Not sure what anti-nausea meds you are taking.  If you are taking Decadron (steroid) or received it in your IV pre-chemo meds that may be the reason you are wired and having problems sleeping.   You may want to talk to your onco about options for helping with the sleep situation.  My onco suggested that I take Benedryl at night to help me sleep at night while I was on the Decadron.  I don't take any sleeping aids on a regular basis and resisted taking the Benedryl until the 4th round of chemo.   I know I only took the Benedryl after the 4th & 5th chemo rounds for 1-2 days after I had chemo.  When I don't sleep at night, I try not to fret about it.  It seems like worrying about not sleeping makes me feel more anxious and upset.  Sometimes, I just get up and lay on the couch and veg in front of the tv.  Sorry that the side effects may be setting in.  If the side effects intensifyor you just are unsure, call your onco. Don't wait and wonder if the side effect will clear up on its own or what to do.  Your onco is used to having patients call to ask about what is happening post chemo and is there to help you and reassure you.  HUGS!!!

Jojo2373- The retail cost of my Neulasta shots was over $16 K per shot.  Since my hospital cancer center is on my insurance's network, there is a $9K discount. The insurance paid almost $7k for each one of my shots and I had no out of pocket costs since I've already covered my yearly deductible.   Although the shot is expensive, it is still better than going to the ER and being admitted into the hospital for a several day stay!!!!  Enjoy your day to day and relax before your chemo tomorrow.  Wishing you an easy time in the chair tomorrow and minimal side effects.

I can not believe how much the Neulasta shot cost!!!! That is crazy!  I am going out of network- so I have to pay 20% of all of my visits.  Luckily, there is a maximum amount I can pay each year - $2000.  My heart goes out to anyone who has to deal with all of these crazy costs on top of having cancer. 

I have been having pretty restless sleep too and irritable.  I have been rinsing with the baking soda/salt mixture which seems to be helping (with the Nystatin).  

Sometimes, this all just feels so surreal.  Hope everyone is able to get some rest today.  

By-the-way, too, I was told that my Neulasta shot costs £800 (roughly $1200) each time (I don't have to pay for this), which is a massive difference. $16K per shot? That's insane... someone, somewhere is making some serious money. I echo what Mariposa said--it's really awful that anyone should have to be dealing with fighting their cancer and also worrying about the financial impact of having the treatment.

Yes! Yes to everything you all have said. I have felt and gone through it all with you ladies. It makes me feel like Im in a secret club. The not sleeping is the worst for me. I had immediate reconstruction and for some reason the TE's kill at night. Nothing worse than feeling punk and not being able to get comfortable! I have a horrible headache, but on the whole, round 1 wasn't as bad as I thought. I won this one:) my advise to everyone is stay on top of it, push back a little more everyday....don't let the cancer win!

I just made my appointment for my free haircut at JcPenneys for Monday:-)  I am getting a little Pixie cut.  I think the inevitable hairloss will happen by the end of next week.  The lady on the phone was so super nice.  She said that they all received special training for the month of October.   I have a new found respect for JcPenneys!

Thanks again Patricia!