September 2013 Chemo Group

KBEE I hope you are ok.

I hope the temp goes down and you feel better quickly! Praying for you!

LHL- hope you and your daughter feel better soon. 

White count is low. Being admitted. Will miss the girls' intersquad swim meet tomorrow. Very, very sad.

Kbee - not surprising that your counts are low. You probably have febrile neutropenia. Your doctor just doesn't want to take a chance that you have something more serious going on. I'm glad you had a good experience in the ER and hopefully in your room. I hope and pray you get excellent care and you'll get to go home soon. I know how frustrating it is to have our lives so disrupted, we can become depressed missing how things use to be. Thankfully, these set backs are temporary. There are better days ahead.

Good to hear you are doing better Kbee.

Kbee-so glad to hear your fever is down and that you are feeling better. As much as I HATE neulasta and it's nasty side effects it certainly does work. I understand now why my MO won't let me skip my last neulasta shot after chemo #8, he said why fix what isn't broken, it's working and the 2 days of pain/lymph node swelling/all over yucky feeling are worth not getting sick and potentially admitted. Myself, I'm flirting with low hemoglobin, getting anemic and down into that range where a RBC transfusion might be needed. Hoping this switch to Taxol helps, as Lighthouse lady has seen her counts go up after Taxol #1.

Just throwing this out there in case anybody has knowledge or a study to point me to but I had a discussion with one of the infusion nurses on Friday. He's been administering chemo for 20+ years and when neupogen and neulasta came about in order to allow this dose dense every 2 week chemo instead of every 3 weeks without those WBC boosting drugs, he's personally seen less reoccurance. Are most of the statistics about breast cancer survival and reoccurance lumping the two regimens together? I would like to see some numbers for 2 week dose dense with neulasta shots .....hope this makes sense. I'm currently in neulasta hell where I feel like my whole body is getting squished inside a tight burrito shell ....at least I don't have the old A/C digestive issues and teetering nausea to go with it this time.

Kbee - glad you are doing better!

afranco - I've felt the same way. Thankfully these hard times are temporary. Better days will come!

Hi from Montreal, just joined, I was perusing the breast cancer sights and came across this one its good to have this interaction about our therapies. I was diagnosed with BC this august, PR/ER positive and her negative. My oncologist decided to go with treatment first before surgery. 4 AC treatments 21 says apart plus 12 treatments of taxol afterl I have completed 3 AC and have another next week. I had a lot of side affects and extreme fatigue. Anyway ladies, what can I expect from taxol, will that terrible sweet/salty metal taste leave me along with the other effects, my oncologist tells me it will be a breeze compared to AC, well he also said that my first ac wouldn,t be bad but oops forgot to tell me about chemo head which I had first week after treatment, I grew up in the 60s/70s etc and believe me all I needed was to put on some jimi hendrix cuz I felt like I was tripping  LOL..... So I think I would like to hear some hands on comments about taxol.     Thanks

HI Lighthouse, thanks for enlightening me on what to expect, my doc did say it would affect my joints and muscles, but hey if its the price we pay to get thru this horrible disease so be it right? My third round of ac was really tough and I dont recover as fast as I did with my first so I am nort looking forward to next week when they inject the red dragon as I call it. I still didnt loose all my body hair,. the head I did but still have arm etc., They prescribed what they call a magic rinse for mouth sores even though I didnt get any it also helps with the taste, or rinsing with club soda helps a bit. Anyway, hope your little girls feels better soon, try to stay away as much as possible, I know not possiblre. I have two 16 yr old girls, not twins, one was adopted from viet nam at 15 months and the other was 5 yrs old from cambodia  and my one from viet nam was 5  he good thing or what I leraned to do is do a little bossing around or delegating. I also have my sister help me the first week after my treatments which are the worse, so Im glad for that.

Take care talk to u soon   Cheryl  

Thanks Kbeee One of my BC friends was getting ready to donate her wigs so I nabbed one. I've never had short, straight hair, so it's definitely different for me. LOL Good to have another option, though, because I'm already sick of my wig and hats.

hello all!!! Sorry I have been MIA lately. I just can't seem to find the time to write. I have been somewhat keeping up on reading but that seems to be about all the time I have to spend; and even sometimes I shouldn't be spending that time either, it seems. I am so behind on everything. I have no idea where I left off on posting lol. I think it was right before my last infusion. I saw my onc and he agreed that it was the Taxotere that was causing my extreme muscle fatigue/burning/pain. He went ahead and lowered my dose. He said he didn't think that it would reduce the effectiveness. It is a little worrisome but I can't live the next however many months not being able to go up half a flight of stairs without feeling like I am going to die. He also put me on another steroid script to take for a week to see if it helps (pre-chemo steroids helped tremendously!) and okayed me for multivitimin, L-Carnitine, and B6 in addition to the Glutamine. So, all in all, I am feeling better about things. It was so very depressing having to live like that. It is bad enough to have to deal with "chemo week" but when chemo week doesn't seem to go away and you get no break it is just plain discouraging. I actually got my little kids' room cleaned and organized the other day (3 hours lol) so that made me feel better. It's nice to do normal things.

I had #4 last Wednesday and am actually doing okay. Neulasta seems to keep getting harder and harder on me. I took a Lortab in advance this time but yet it still hit me hard enough to make me cry...and take another Lortab. I have spent the last few days in a total haze. Chemo seems to be impacting my cognitive ability much more too. I could barely function to type the last few days. It was total hunt-and-peck typing. I'm feeling okay now though. I think it is because I am officially over the hump and more than halfway done! HOORAY!

Some things I have wanted to comment on as I was popping in (sorry I don't remember who all posted what):

Eye twitch: OMG!!! This drives me nuts! I also get twitches in my stomach. You can actually see them and sometimes it really looks like I am pregnant with a very active baby. Am I the only weirdo with this issue? lol

Constipation/diarrhea: for all those starting Taxol. I know I am on Taxtotere but they are related anyway, and here is my experience. Taxotere sucks every single drop of water out of my body. I can be perfectly fine going in but once I leave I feel like I was drained rather than infused with anything. This last time I started taking stool softeners two days before and I also took a Senticot the day of infusion but still am just backed up. Small hard pebbles lol sorry if TMI. At least I am still managing to go some though. I would recommend hitting it with whatever you have. Coffee helps me a lot too. I pretty much stopped drinking it but started again on chemo weeks (adding to liquid intake, not replacing!)

Hair: My hair started growing back after round 2 (I attribute that to fasting!). I didn't fast for #3 and it started to fall out just a bit but stopped. Currently I have a good 1" of new -WHITE- growth. We will see what happens since I didn't fast for #4 either. I started coming down with a cold -again!- so I didn't want to stress my body out more. However, cold is mostly gone and I attribute that to Thieve's Oil. I have a vial of it that I wear around my neck. I am taking Microbiology this semester and have read into the antimicrobial and antiviral effects of essential oils as well. There are legitimate studies that prove it's effectiveness. I went to church and forgot my necklace and sat next to someone who was sick. I think that is where it came from. I feel okay now though! Anyway, someone else asked about fasting too. I fasted for 48 hours pre and 24 hours post with an additional 24h to slowly add food (I kind of failed at this part though lol)

Skin: LHL: I have HORRIBLE skin pain with the Taxotere. Funny thing about this, I saw your post and thought "yeah I did the first two rounds but not the last one" The next day Whammo! It got me. My pain is primarily my shoulders, upper back, neck and head. I'm imagining with this head skin pain that I will lose my hair again. I don't know why I didn't have it the last round. I can't think of anything that I did differently.

Nails: I knew I was forgetting something important on the way to chemo last time. I forgot to paint my nails. I guess we shall see what happens; if I lose any. I am thinking my right big toenail looks like it is getting darker too.

Foobs: (I seriously hate that word too for some reason =/) I am going with BMX just because I am only 33 and higher risk for reoccurance plus I don't want to do rads.I saw someone post that you have sensation with a nipple sparing procedure? Is that true? I thought that was just for cosmetic purposes and there was still no feeling or "responsiveness" to the nipple? Also, I am wondering what the sensation is like? Are they completely numb? I am really worried about that because I think I may be more inclined for nerve damage or something? My port has zero feeling in it. I do not even feel them access it. I can't imaging having two huge foobs on the front of my chest like that. I can see myself regularly shutting them in the car door or something. *sigh*. Is anyone considering the DIEP or similar procedure? I have heard there is more liklihood of regenerated nerve tissue that way, but I don't know if that is true. I haven't met with my PS yet, but it is coming up. I just don't know if the extra recovery time/pain is worth it, but if it means having something that actually has some feeling I think it will be.

Alfranco: I totally hear you with the depression. If you ever need to talk I am here. I struggle with it regularly. I seems to come and go with treatments. Keep your chin up and know that there is a light at the end of the tunnel. We are getting there!

Cougar: So happy that the baby is doing well! I cannot imagine having a newborn right now. I hope that he continues to be a good baby for you and let you get your rest!

I *think* that is all lol. Sorry for the long post (as usual). I wanted to thank you all for everything too. I don't know what I would do without you. You guys are the only ones who really understand what I am going through right now. Oh, and the most crazy news of all? My sister (the one who used to be my best friend but pretty much turned her back on me?) she called me during round #4 just to chat. She saw my post of FB saying that if anyone wanted to come visit I would be there all day lol, so she called. I couldn't believe it. Maybe she is coming around. One can hope, anyway.

mama stewart - no feeling with nip sparing - they core out the nipple so it is really just a decoration on the front (hopefully - not always) of the reconstructed breast. I had nip sparing, but if I had it to do over I wouldn't probably, I would go with 3D tattoos.

yay for those who have finished chemo!

kbeee - are you home yet?

lighthouse - hope your DD is feeling better soon!

I hope you are either out or about to get out Kbee. 

Hi All,

I haven't posted much here. I started neoadjuvant chemo in Sept. with weekly Taxol (12 rounds). I had round 10 last Wednesday. After I'm done with Taxol, I'll be getting AC (4 rounds every two weeks). I know I'm backward to most of you here in terms of chemo order. For the most part, taxol has not been hard for me. I do have a "crash day" which I hate that seems to occur either on day two or three. Also, the last four weeks, it's taken me longer to bounce back. Amazingly, I still have hair on my head...it's thin....but it's enough to go out in public looking normal. I haven't had any bone pain (that seems to come more with dd biweekly taxol) and my red blood cell counts and white blood cell counts have been in the normal range each week right before the next chemo. I'm sure they are lower inbetween just based on how tired I feel. I've had a little neuropathy on the bottoms of my feet which I hope will go away after I'm done with the taxol treatments. If it wasn't for the crash days and the mounting fatigue the last few weeks, I would say that taxol has been easy. Oh, I did have constipation issues for a couple weeks, but Miraliax took care of that pretty easily.

I'm getting nervous about getting AC. It will start Dec. 10. I will have a three week break with no chemo infusions between my last taxol and AC. Any advice on coping with AC?

Kay