Starting Chemo Feb 2010?

Glad to hear everyone is having fun in the sun, and exercising!  I'm not there yet-soon.  After chemo is over and I feel somewhat normal again.  I still don't think I could brave a pool, though.  I'm chicken!

I'm guessing then, that the Neulasta probably hurts worse for me because I'm skinny.  That would make sense.   It's the same nurse for me everytime, and this time I hardly felt the prick, just the burn.

Had my typical couple of days of feeling like crap, but I'm starting to come out of it.  I seriously wish the claritan helped me.

I'm definitely ok with not getting another period, but being only 39, I may not get so lucky.  I'm wondering if the Tamoxifen will prevent them also.  I figure if I have to suffer through hot flashes for 5 years, at least I could go without a period too, right?

Sorry to hear about all the issues with Neulasta, I only had to have the shot twice- and that was during AC treatments. My WBC's have always remained fairly consistant- and not too low. So I have not had to have them. My nurses too told me it was all about the speed...so make them slow down! I also can't speak to the periods- had a hysterectomy 10 years ago and I still don't miss those!

Ado-some of the stuff I read says hot flashes have triggers- mine seems to be caffeine, yours could sure be sugar- or if you have chocolate with your sugar that has caffeine in it.  You have to play with your diet and see if you can discover your trigger.

I had to deal with a bladder infection- why do those always happen on a Friday afternoon?? I am constantly confused if I should call my onc or family dr. Finally got the family guy to respond and got on yet another medicine. I am on first name basis with my local pharmarcy staff. Neuropathy is better this week tho, so I anticipate being able to do the full strength Taxol this week.

mofend, great hat I found at PGA store; it's a kangol which doesn't have a big insignia and is the most comfortable cap ever, is great in hot weather.  It doesn't have back venting so you can sort of hide lack of hair.

 http://www.kangolstore.com/p/216967/Tropic-Ventair-Spacecap.aspx?c=1746

mofend, great hat I found at PGA store; it's a kangol which doesn't have a big insignia and is the most comfortable cap ever, is great in hot weather.  It doesn't have back venting so you can sort of hide lack of hair.  http://www.kangolstore.com/p/216967/Tropic-Ventair-Spacecap.aspx?c=1746

I haven't really paid attention to what triggers my hot flashes, if anything.  I drink either coffee or soda during the day (2 cups of coffee or 1 can of soda), and usually some kind of small dessert.  I do notice that my hot flashes are much worse at night, which I can't figure out.  They definitely mess with my sleep-I wake up all night long.   Frustrating.  Still waiting for the Neurontin to kick in-I may be noticing a slight change.  Maybe.

I'm really glad I haven't experienced any neuropathy-and I'm sorry for those that have.  Fingers and toes are fine-nails are fine, although they are hardly growing.

I really can't wait to get my hair back and not have to wear some sort of bandana, wig or hat on my head.  It is so hot here (108 today), my head is sweating like crazy!  I don't remember it doing that when I had hair.

My thoughts are with you going through radiation-I hope they go quickly, and without burns!

Take care ladies!

Swiftbird, that's a tough decision you're facing. We thought my tumor was smaller than it turned out to be and didn't suspect any node involvement (surprise!), so I started out having a lumpectomy.  The margins weren't clear and the SNB, which was done the same time as the lumpectomy, showed the cancer was just starting to get into one of the lymph nodes. I had the choice of the surgeon doing a re-excision to try to clear the margins or having a mastectomy. My surgeon was concerned that the path the cancer traveled from breast to node may have left some of the cancer along the way; pathology later showed it hadn't, but that was a chance I wasn't willing to take. The surgeon also kept reminding me that mine was an aggressive grade 3 cancer and I was a young(ish) woman, the implication being don't risk leaving any cancer behind when I potentially have many more years ahead of me.  

Because of the node involvement, my surgeon insisted on removing all of the remaining lymph nodes no matter which option I chose. There were a few cells found in one more lymph node when they all were removed, nowhere near enough to call the node positive but something we didn't expect.  

Since there was node involvement, I would need a larger area radiated than if only the breast had cancer.  I had been diagnosed with an odd lung disease in my 20's, and my oncologist told me that with radiation there was a risk of overspray which could damage my lungs.  

Making the decision to go ahead with the mastectomy was the toughest decision I ever had to make.  I did it partly out of fear, not willing to take the chance that my aggressive, traveling cancer left remnants. And, I went with mastectomy to protect my lungs and heart (since mine was on my left side) from radiation.  

Recovery from the mastectomy was so much more difficult than from the lumpectomy. I'm still a little numb, which is pretty normal for mastectomies. Reconstruction isn't a picnic either, but dragging it out to do chemo plus not being able to get an appointment with my busy plastic surgeon to finish the job has made it worse. Overall, I made the right choice for me, because I know I would always be questioning whether they got it all during the lumpectomy and if not, had the radiation done its job and cleaned up any leftover cells. 

Swiftbird, good luck with your decision and bounce any ideas off of us that you need to. There's so much to take into consideration, and I hope your decision becomes clear to you soon.

Cindy 

retrievermom----no!!!  not the nails!!!  it is the only thing i have left!!!  they have been great so far & even today at my appt, the onc looked at them & asked if they were acrylics---no--mine, all mine.  but i can see the difference in the nail from when treatment started & you are right--it is thinner.  sniff

the neurontin has helped my hot flashes, but not preventing them.  just less overwhelmingly uncomfortable... and maybe fewer.  not sure.  sometimes i look forward to them, as i get so cold!!!!    not a clue what my triggers are as still not eating much, no caffeine, no alcohol, and hardly any cheese.  thought we had a mouse in the fridge cause the last piece i reached for had a bite out of it, but no.... just dh.   what is he.... 12???

Good luck with your decision, Swiftbird.  Sending positive thoughts your way!

I have a terrible infection on my lower lip.  Scabs that ooze if I touch them or pressure from a cup.  It's swollen like I got popped in the lip, or I had Botox-funny looking, if there was any humor involved.  I woke up with it yesterday, and was waiting to see if it was any better today.  No luck!  I'm waiting for the doctor's office to get back from lunch, then I'll call them.  My lower lip was so chapped it was cracked and bleeding about 2 days ago, so I'm guessing my low white blood cell count did me in.  I'm seriously hoping there's something the doc can prescribe.  They haven't gotten the slightest bit better from yesterday.

That's the latest for me!  One more thing I can chalk up to this lovely chemo crap...

Swiftbird - good luck with the decision, it is tough but once you make it don't second guess yourself:)

 burley - sorry to hear about your lip, ouch!

This is VERY strange...I just found out that my next door neighbor also has Breast Cancer and she was diagnosed at almost the exact same time as me, but went through chemo and rads quicker, she just finished with rads!!  She kept it "close to the vest" like I did, but how strange.  She and I are getting together next week to compare notes and we are both getting the water checked and maybe more checked out!!! 

Have a great holiday weekend ladies, it is beautiful here in Jersey! 

The infection from my lower lip has now spread to my upper lip-I officially look like I had a bad Botox job.  Called the Onc yesterday, and all they gave me was a cream for cold sores!  Holy cow.  I don't know what cold sores look like, or if they're usually in the middle of your lip (or the inside of your lip like the upper is.)  I've only seen them on people at the edge of their lips.  They crack and ooze when I eat, so I'm taking tiny bites and using a straw.  This sucks.  Definitely the worse side effect yet.  Well, other than losing my hair.  

At least I have an excuse to not have sex!  This chemical menopause left me with no desire AT ALL-my poor husband.  Not that I see him very much to have sex anyway.

I hope everyone has a safe and comfortable weekend and 4th-take care!

CinD, Failthfulc and Kshep, burley and everone, wow, thanks for all the great and thoughtful feedback and advice.  I was tested again on friday - after 6 rounds of aggressive chemo - and although the hospital said I wouldn't get feedback from my mamogram (and I get a MRI and ultrasound in the next few days) until I sat down with my surgeon and plastic surgeon, the radiologist was so excited he pulled me aside and told me that he couldn't see my tumor anymore on the films.  That was the best news I've had in so long!  It will certainly make the surgical consults this week and next pretty interesting -- I am still prepared for some surgical mop op operations and radiation.  Has anyone heard of this happening and what I might expect from the surgical team?

As an aside - have a GREAT plastic surgeon at the Mayo. His name comes up as pretty prominent in specializing in breast cancer/reconstruction and DIEP procedure (should I need that down the road...) 

Still recovering from my last round of chemo, 4 weeks out now.  Tired, but happy!

Swiftbird Your news mademe so happy.

Writer thanks for the news about Herceptin and SE's I start on the 15th July. Why were you on TV ? Sounds exciting. Do share with us.

Swiftbird-YEA!  That is terrific news!  So nice of the radiologist to pull you aside like that.  I bet that just make your day, weekend, year...congrats again!

My lip infection is on the mend.  I had one in the middle of my lower lip that is gone completely, and the ones inside my lower and upper lip seem to be healing as well.  I did a lot of reading on cold sores, and although they don't say they can get inside the lip, these definitely sound like them in many ways.  Like the first thing that happens is bleeding gums (which I had on Tuesday), and they more than likely start in an area of chapped lips (and my lips were so chapped on Tuesday they were bleeding.)  So!  Bad thing is now I'll get them for the rest of my life...ugh.  I've been joking that I have herpes of the lips...just to make light of it.  I can't tell you how bad they were, so anything better than that is a blessing.

I woke up Saturday morning with a sinus infection (I think I mentioned that before?) so called the Onc on call and he prescribed a really strong antibiotic.  It's gone now for the most part-glands are still painful, though.  But I'm going to finish the med out for sure just to guarantee something doesn't come back.

My son came home from 4 weeks at camp on Saturday-yea!  I missed him like crazy.  Poor 15 year old got hugged over and over for about an hour...probably would have gotten a kiss if my lips weren't messed up.

I hope everyone had a great 4th!