Chemo group starting December 2014

Thinking - totally normal to have a high white count, as long as they have ruled out an elevated count due to an infection of some kind.  Keep in mind that Neulasta stimulates the manufacture of white cells, but does not necessarily have a stopping point, so can make a lot of them.  This also happened to me - my WBC was high each time after Neulasta.  My center did not use the finger prick for CBC, but some do.  I always had full tubes drawn and had a CBC and CMP done each time I was to receive chemo, and a weekly CBC done during the time I was on chemo.  If you have not been called back and put on an antibiotic I wouldn't worry too much.

Soy is one of those things that you will find a divide on.  Some say it is ok, some don't.  The type of soy matters, but during chemo you might be willing to suspend some of that in the interest of getting through the process and worrying about your diet later.  You can use whey protein, although it may make the D worse, or plant-based non-soy protein.  The reason for avoiding soy has to do with estrogen - it is a phytoestrogen so some feel more comfortable avoiding it, while others feel that it has an anti-cancer effect.  Right now there is little definitive info and it comes down to personal choice - here is some info from Dana Farber:

http://www.dana-farber.org/Health-Library/Soy-Milk-and-Breast-Cancer.aspx

Specialk - thanks for the info. I was checking the labels on various shakes and most had concentrated soy proteins. I guess I'll try and not worry overmuch about it.

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I'm still in the hospital for another day or two to make sure my kidney function goes all the way back to normal. Same with potassium levels. They aren't sure I'm absorbing well orally... so lots of stuff thru IV. Stomach still achy and diarrhea still terrible so they have to fix that.

They may need to slow down the chemo which would be bad. Hopefully they can find something that will enable me to get through the treatment.

Thanks for your thoughts, Cjfishergal.

CanukPrincess -- ah, that's too bad you are feeling tired. I was hoping you were totally going strong at practice.

Hopefully you can get some bland foods stocked and keep your energy up.

Hello ladies, I would love to join your little group. At least unless I find an "opt out box" that will allow me to skip the whole experience...

I got my port put in 12/5 and got my first chemo scheduled for December 17 -- my 50th birthday! Well, it solved the dilemma of how I was going to spend my special day. I felt well prepared going in set up very efficiently and I had a nurse sit down with me for a couple hours the previous week and explain exactly what was going to happen. We talked about potential side effects and how to mitigate them. For instance, she suggested taking a claritin every morning to avoid muscle aches from the neulasta shot, and Sennekot S each evening to avoid constipation from the Zofran.

I was afraid of the neulasta shot because I read it could cause weight gain in odd places (and I'm very vain), and I certainly don't want to put on weight or have swelling.

My husband went with me to the chemo appointment and it was a nice set up with an adjustable bed and a view to the outdoors. They have WiFi, TV, food and drinks. I got the port numbed up the way i had been shown, so hardly felt anything when the tubes were inserted.I was getting the A/c combo. The treatment took several hours . They added long-actjng anti-nauseameds through my port; Felt absolutely fine when we left that evening. Stil felt good on Thursday as well. . Docs told me Friday night thru Sunday would be hardest. Suggested I take zofran beginning Friday night. I felt yucky and rather nauseus most of Friday, so I think I just need to start the zofran earlier than they said.Other than that, I felt better than I would have expected. During Saturday and Sunday mornings I get a touch of nausea or fatigue but I seem to be able to eat normally in the evenings. That first Saturday we invited friends over for dinner and they brought the chinese food. I was able to eat a pretty good share of the dinner! I haven't had issues with actual weight gain at this point, despite the neulasta shot. I had some fatigure-- but I've been dealing with that issue for years! No pain from the Neulasta shot due to the claritin I take every morning.

I felt much better day 5,6,7. I was able to go exercise those days which keeps me in positive frame of mind, and go to work for most the day.I was feeling like "I got this...." Then on day 7 my WBC dropped below 900 and the neurophils plummeted accordingly. Nurse prescribes Levaquin as a preventive antibiotic, I really as afraid to take it as I read about increased risk of torn tendons. I had just run 2 miles and I felt great, and was told no strenuous exercise for at least 2 weeks after. However the nurse made it very clear what could happen if I chose to not take them and it wasn't pleasant. That whole experience took the wind from my sails...I thought if I felt fine then I was doing fine.

No changes in food tastes or preferences, other than I want something calming if i'm a bit queasy. I hope all goes as well at next round Wedneday 12/31. Some people mention insommnia, and I find zolpidem ER will get me through most the night. I've been taking it for years with no problem. I take Adderall for ADHD and am assumming it's helping to keep energy up. Not that you'd want to go on that medication if it weren't already prescribed....

Wow, didn't have fatigue with first round but sure have it with the second.  I was wore out this morning slicing potatoes to put in the crock pot with some pork chops.  Did manage to go with hubby to Home Depot to get a rack for my hats and scarves.  Came home and folded and hung some clothes and now I am pooped.  Other than that and really no appetite to speak of (nothing has any taste) I feel pretty good today. 

Got another night in hospital until they get my potassium levels back up. I think their strong anti-diarrhea pills might finally be doing something.

The TCHP just totally messed my gi tract up. Food mostly tastes like cardboard. Although chocolate flavored stuff isn't horrible...

The one thing I struggle with, even in this group, is feeling alone. I don't see anybody on the same regimen as I am. I know our side effects wouldn't likely be the same anyway, but it would be nice to see somebody on the same page.

I'm having what feels like bladder pain...or am I just imagining it? Have I become a hypochondriac because my body is trying to kill me?? UGH

I agree with april25, most food taste like cardboard no matter how much seasoning you add.  It is weird how some things still taste normal, like strawberry ice cream and prune juice, (yuk)lol.

All chemo regimens can cause dulling of taste buds - but as with all side effects, not everyone experiences this.  Some people find that they can taste salty and/or sweet.  It is important to eat even if you don't feel like it because your body still needs energy to run - also important to deal with vomiting or diarrhea asap, as april discovered.  It doesn't take long before the whole system goes out of whack because it is already being challenged by controlled poisoning essentially.  I found that since I couldn't taste much, and had issues with the Big D for the first 10 days following each infusion, I just ate bland and easily digested things.  As soon as the D let up I ate as much high protein food as possible, and a ridiculous amount of red meat, in prep for the next infusion.  You also may experience side effects that differ from infusion to infusion, or a cumulative worsening of the ones you experienced early.  Just when you figure some of them out - and how to deal with them - you stop having them, and new ones appear, lol!  Keep in mind that all chemo regimens can affect all soft tissue - so GI side effects, or bladder, or skin, tongue and mouth, inside of your nose (most apparent when your nose hair falls out - yes, this happens, lol!), lady parts, etc. - can all be affected.

mamamule - your WBC may have been the same regardless of the Neulasta injection, not necessarily any lower - I am thinking it was ineffective so had no effect at all. 

Hello CanuckPrincess - I was on Taxotere, Herceptin and Perjeta from March to June of this year. Taxotere is like a harsher cousin of Taxol from what I've been told. After I completed chemo I carried on every 3 weeks with Herceptin/Perjeta. I can relate to feeling alone. Please feel free to PM me. - Karen

WheelyGirl -- that is all very scary and frustrating. I can totally understand your venting. We have these people who are trained in all this stuff and yet still need to watch over them...

It's definitely true that all is not equal with health care professionals. That doesn't make our lives easier.

At least you now know to question that person's advise!

I wish you and everyone luck in finding people who are actually competent!!!!

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I have a big case of distrust in my doctors. My MO claimed to have never heard of Taxotere Carboplatin Herceptin given with Perjeta. He only agreed to the perjeta after I got an outside 2 nd opinion.

I'm changing to a PPO and new team of doctors at the start of the year!!!! Thank goodness for open enrollment!

Hi CanuckPrincess - Have you tried posting in the "HER2/neu Positive Breast Cancer" forum? There should be women on the same protocol as you that may have some insight. Karen

Wheelygirl, you said the NP was "assigned" to you -- do you have the option of requesting a different one? It's so important to have confidence in your whole care team and the NP you have sounds like a dodo! To not only suggest a combination like that, but to admit to you she just ran the combo through an interaction checker and doesn't actually know what she's talking about?? Xanax and Percoset are both commonly prescribed drugs, so you'd think she would have known about an interaction, and also that they shouldn't be used in place of a sleep aid. If for some reason you can't get someone else, keep checking up on her recommendations with your own research and question anything that doesn't make sense!

I've taken Ambien CR for several years and really like it. Because I've taken it for a while, and because I take a couple medications during the day that cause insomnia, some nights it only lasts 5 - 6 hours. However it's the best one I've tried, and I've tried them all. Some people prefer Lunesta, but it's just a matter of what works for you. In either case, these are extended release medications and should work better than the regular Ambien.

So sorry you are having such a rotten time of it CanuckPrincess! Did they at least give you those pills that numb your bladder in case that might help some?

BTW, there is a triple positive thread as well within the her2 pos forum.