January 2013 chemo group

Virginia, so sorry to hear you've had a rough go of it but happy to hear you're feeling a bit better.  

I had the Neulasta shot as well with this most recent round and my WBC was 1.6 today.  Wow, it's hard to imagine what it would have been without the Neulasta!  For round one (without Neulasta) my WBC was 1.9 at one week and then 1.8 at week two.  The MO says come back in two weeks and even said he would rearrange chemo because of Valentine's Day.  I told him every day is Valentine's Day with my husband (awwwww) and I'm just ready to sit my behind down in that chair on the 13th and get another one under my belt.  

Oliverhog, you look great/beautiful!  Good news with Peyton re: the doctor being satisfied with things thus far.  

Skimommi, looking forward to checking out the video after tonight's walk.  Boxers can be such clowns!  And they really do use their paws like hands!  

LynneNJ, welcome to the board and I hear you on scars/baldness.  I really like the Buffs because they feel good on the head and do a pretty good job of covering some scars I have on my temples.  Wishing you good luck with the chemo.  It sounds like you've really had a time with Lyme disease!

Amrdbit, sounds like you're making the best of treatment day!  Have fun with your visiting friend! 

gr8flmama, ha!  I think this truckstop prostitute would scare away all the customers the minute the buttons popped off and the scarf fell away!  I also thought lounge lizard started with Jim Morrison of the Doors but I really don't know.  Maybe he was referred to as a different kind of lizard...

Paula, I hope you're feeling better today.  Wow, I felt so bad for you when I read your post about just getting the energy to get into the house!  The only silver lining I can think of is that surely this means that the chemo is in there kicking the a$$ of every stray little cancer cell that might be lingering around.  Right now I'm thinking of that sort of overused Nietzsche quote:  that which doesn't kill us only makes us stronger.  I know you're counting the days/hours until you're finished with AC (I'm not good at keeping track of who is where with treatments but I'm hoping you're in the home stretch!). 

ziffy, I haven't noticed too many hairs in my panties but when my head hair finally decided it had had enough there were hairs all over the back of my shirt.  I would have thought they would have clung to the pillow but nope - the back of the shirt.  Are you having any of those weird scalp sensations?  Weird really doesn't describe it - more like painful but I'm not sure if everyone experiences that.

Watta, keeping my fingers crossed for you!

Hope49, thanks for the book suggestion.  I'm sort of gnat-like when it comes to attention spans/reading these days but I'm going to go to Amazon right now and add it to my wish list so I don't forget about it (in case I end up wanting to order it). 

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I mentioned this on the triple positive thread but it's so outrageous that I want to repeat it here.  BCBS received an $88,000 bill for three days of hospital services from the hospital where my BMX took place!  I'm sure that exorbitant fee didn't include the surgeons' fees (BS/PS).  BCBS paid them $12,000 (plus some change) and called it a day!  And also noted that we won't be expected to pay any additional fees.  It's just mind-boggling to me...I have heard that hospitals will just bill anything in the hopes of making up for lost revenue from patients who can't pay.  This hospital is in an area where there are a lot of trauma patients and even the plastic surgeon mentioned that it's known for treating people who do not have the means to pay (obviously, they can't turn people away!).  Anyway, it's the only hospital where my BS had OR privileges at the time (he's the medical director of their fancy schmancy new women's health center and it is a truly beautiful facility across the parking lot from this downtown hospital).  I don't know if that's part of the reason for the $88,000 bill (THREE FREAKING DAYS - TWO NIGHTS) but good grief...

Okay, health care costs rant over.

p.s. Sheryl, I received a scarf from good wishes as well.  They are doing a wonderful service for patients and the scarf is beautifully made.  Good idea to let people know on various threads!

smethot- I am on the AC-T train. I get my AC every 3 weeks. They said because they wanted to give my body time to recover so 3 week intervals was the move. And it is weekly Taxol for 12 weeks.

I've been battling a nasty cold. I had a sore throat on Sunday and by Monday night I was a mess... I feel much better today, but, I still have a cough and sinus issues. I never had a fever so that was a plus. I normally have an immune system of a horse.

Whoever was asking about taking the anti nausea meds..... I stopped taking them on Monday (TX#2 was friday). The first time around I took them for 6 days and stopped. No one told me when I should expect to stop them. I just listened to my body. If I felt weird, then I took them. If I felt fine, I didn't.

My next TX is the day after Valentine's Day. Perfect, just close enough to be a buzz kill.

Good luck to all those who are hitting the bar tomorrow and pray for no bad SEs....

Ok so I have news but we're not gonna call it good or bad. It is what it is. My port re-placement is scheduled for Monday morning. I scheduled it with the interventional radiologist, who is the guy who orchestrated saving my life. I was told by another radiologist that among his peers, he's called superman. Sounds good to me. My breast surgeon (who is looped in on everything) called me and told me she had called in Xanax to my pharmacy and to go pick it up so I can get out the door on Monday. I don't want to need it.



I am determined (my four brothers would say stubborn) to not be afraid of this. So I'll need all your prayers and strength behind me, please.

Hello ladies....Im new to this and am looking for a placeto ask questions, voice concerns, vent and so on. I start chemo om Monday and I am pretty scared. Vthis seems to be the hardeststep emotional so far. So I welcome any and all advise you may have.

I was hoping you can help me out with something. Should my mo specialize in bc only. I've been going for opinions and I got one at rush yesterday, honestly he commute is to much. I love my Bs and He's referring me to one of their mo but they don't specialiZe just in bc. I'm kind of worried. Does it matter.



Gina

Bryona-my parents bought a neighborhood bar when i was 18. We always called the creepy old guys lounge lizards. My uncle was one and he wore a horrid squirrelly looking headpiece. Dying to find a wig i can get to look like that so i can make my brother & sisters cry laughing. My little cancer joke on them.

Colleenkelly,

    I am REALLY interested in what you said about your Neulasta shot:  "Also they gave me 4 mg. instead of 6, because they said that usually the 4 works just as well without the side effects".   I would LOVE to know more about this.  The first round I took the Neulasta shot (6 mg). and my WBC count shot up to WAY above normal, 56,000.  (normal is between 4,000 and 10,000.)  My primary care doctor (who is also a good friend, and a more wholistic type of MD) was quite concerned, said 56 is not ok, and maybe I should be getting less Neulasta.   He called my MO, who was not very open-minded about it, said, "It's fine, don't worry." and "This is the protocol", but didn't really address his/my concerns.  I got kind of the same response when I asked my MO myself, although he did hear me out.  I suggested maybe taking a little less Neulasta.  He said "That's not how it's given" and "too high is better than too low".  (Why not aim for "just right"?).   He did agree to ask the hospital pharmacist if giving a partial dose is reasonable, although he hadn't heard of it.  (I called the pharmacist at Amgen, who make Neulasta, and she could tell me only that they don't have studies either way on the advisability of giving a smaller dose.)

  In short, can you ask your doctor - maybe before Friday? - if he has a source for giving the smaller dose?  I'd prefer to be working WITH my doctor, not to be "noncompliant".  (But I'm the one holding the actual syringe in my hand - couldn't I just give myself three quarters?) 

Now that I know the medication is so darn expensive, I'm wondering if they say "don't give a smaller dose" just because it seems like an awful waste!

Hi Ladies,

Really need some advice on mouth ulcers.  I get them from time to time anyway but I now have them and one so big on the edge of my tongue it is affecting my speech - handy.  It is really really painful.  Aside from bicarb and salt washes, has anyone got a good fix for them? I had this virus as a teenager where my whole mouth filled with ulcers and cankers and to this day, I can recall the horrendous pain.  I am so hoping this doesn't covert to that.  

Any tips much welcomed.

Thanks!

Jubby- the only advise I can give you is that I take an amino acid called l-lysine daily. I had BAD ones when I ws a kid and now if I dont protect my lips from the sun I will have a flare. I haven't had one in a few years and no sign of them through 2 tx so far...  This is what I found for the reason....

Canker sore can be cause by more than one thing, I guess, but a primary cause is a herpes virus. It lives at the base of the nerves or something like that, and it needs l-arginine to come to the surface and cause sores. When the cells have a lot of arginine it replaces the lysine, the virus migrates to the surface and causes a sore. If you take lysine it displaces the arginine and the virus recedes.

That is why all my life I got them when I ate nuts, which are high in arginine. Now, when I first start to get one, I take about 2000 mg of lysine, and overnight it usually goes away. If I actually get one full blown before I take lysine it takes more lysine and it takes longer to get rid of it.

Now I wonder if green tea is high in lysine. Do a little research on the dosage to see what you should take. I take 1000mg split into two doses. seems to do the trick. Also green tea compresses help.

Sheryl - its not about getting hooked on one or 30 doses. It's about debilitating fear and I do not want to fear every single medical procedure for the rest of my life. It's about fearing the very thing that put two holes in the side of my body and going back for another try. It's about a simple procedure being simple for everyone but me, the statistic. I know that this is the way to go. I know I'm not offering up the veins on my one arm to be destroyed by chemo. Its a little hard to muster up the fortitude to get going. A strong woman recognizes it in others and I know if I have our board behind me, I will be as strong as steel. We have some tough cookies here.

Mandy, before my first tx I was crying, cried when they put in the IV, I was a total mess. I had taken one Ativan before, should have taken two. They gave me more with the saline drip...take it!!! Ask for it if they dont offer. Fighting anxiety is too hard. I did tx #2 yesterday with one Ativan as insurance and none in the IV. Knowing what to expect helps, it's the fear of the unknown. And don't be afraid to ask them for it either, they want you calm as well.



And Gina, I'd go with an SO and MO who had experience with breast cancer surgery, and chemotherapy or whatever your treatment is, no question. Someone who specializes will know what to do in any contingency. They are up on all the studies and literature. Can someone drive you? Hubby, good friend, hospital shuttle? It's worth it in my book. I travel 1 1/2 hours to Boston and the same back. DH drives, but I have friends who have offered if he can't.



Morning-after update: no steroid high this time, in fact I can't open my eyes over halfway. Tired already. Headach...can I take Tylenol? Made a strawberry kefir shake for breakfast, drinking decaf green tea. I just got a call from an old friend who went through this recently! What a breath of fresh air



Breathe in, breathe out, move on. Wishing everyone minimal SE's always.

Oliverhog- I saw this and thought your son would think this is just the coolest considering the circumstances...

http://www.casttoo.com

I wish I knew about this site when My son broke his wrist. I would have totally done this for him. Might put a little smile on his face.

MandyNY- Hang in there. You are strong and brave.

Watta-I was told Tylenol was ok. Just be mindful of the dosage.

Everything tastes like metal now and from what I remember I will loose all taste today or tomorrow. I hope it goes away by Sunday. I am hopefully going to a Superbowl party where a bunch of fantastic cooks are gathering. I'm going to be really pissed if I cant taste anything.

Good luck to those going to the bar today and those nursing hangovers.

Also, Mandy, ditto to what Skigirl said: "you are strong and brave."  

You will be in my thoughts and prayers!