September 2013 Chemo Group

lighthouselady

Cougar - I love the name Cooper :-) And how great that he's a champion sleeper! Neither of my kids were... we called it the "no sleep club" LOL Hope you're doing well after your AC the other day.

Taxol #2 this morning... after today I will be 3/4 of the way through chemo. Woohoo! I've been a little under the weather this week, so I'm hoping my counts are good enough for treatment.

KBeee

Cougar, I also love the name Cooper! So thrilled to hear that he is a good sleeper; you so deserve to have a content, happy baby who sleeps like a champ! Most people would see the down side of things, and you are just so positive focusing on how blessed you are. Your kids are so very lucky to have such a positive mom! I hope you are recovering from that last AC, and that you breeze through the taxols.

LHL, I sure hope your counts are good and that you can be 3/4 done with the chair after today. Praying for no side effects, so you can rsst and recover from your cold.

lighthouselady

Counts are good! WBC are up to 11.5 and my RBC went up from 8.8 to 9.5 so that's good. Moving away from the transfusion danger zone. About to get hooked up for Taxol #2.

lighthouselady

Has anyone had any issues with their skin hurting? I have a sore area on the back of one shoulder... it feels like a bruise but if I rub the skin it hurts. There's no rash or anything so I don't know if it could be a weird nerve thing?

KBeee

LHL, As for the skin hurting, about 5-7 days after my treatments, I have some sore spots, and then a day or 2 later, they turn into big huge, teenage style zits. Bleck. Yuk. I hope that is not what is happening for you. I have gone through 2 tubes of acne cream, which has, thankfully taken care of them. I hope yours goes away without furher issue or incident.

Srmill, The fatigue is the one thing that does seem to be cumulative. Hopefully you can get some friends to take the kids for playdates for a couple hours here and there so you can get some rest. And get some meals lined up so you do not need to cook as often. I can't i agine working full time through this. I am justbworking part time through it...and to do it with young kids...wow! I am on a different regimen, but my 2 good friends at home here who have gone through yours have said that the Taxol was much easier. I do know that they were more fatigued by the end though so definitely make sure you ask for help. I brought many meals to those 2 friends and brought their kids to practices and such...they are paying it forward...well...paying it back I suppose...now by doing the same for me, and my other friends are helping a bunch too...and I am NOT one to ask for help. I hope your last AC is more like the first 2!

Mamastewart, Just checking in to see how you are doing.

JellyK

Hey, haven't been on much lately - I've been feeling good and working on my positive attitude, which means much less time on the computer and more time out with my kids :-) I had my first Taxol treatment last week and it went great - no more nausea, no more weird taste issues (although I've noticed some tastes are muted - mac & cheese tastes like glue), and NO MORE CONSTIPATION!!!! I haven't had diarrhea either, just pooping like a normal person for the first time in 4 months, lol :-) One thing that's helped besides Taxol not causing me constipation is a new addition to my diet - oatmeal. Not instant, but not steel cut either, I microwave it for 3 minutes. Awesome awesome magic, I wish I'd tried it back when I was on AC. The only thing Taxol has caused me so far is fatigue and MASSIVE chemobrain - I basically feel like you do when you stay up all night. I'm walking through water and I can't hold onto a thought long enough to participate in a conversation very well. But since I'm pooping like normal, I'm no longer complaining about ANYthing! Also it was worst on days 3-5, so it's not completely constant.

Wishing everyone the strength and resilience to continue through to the end of their treatment :-)

PeacockGirl

jellyK-thank you for the Taxol update, I have treatment #5 tomorrow (first taxol) so your experience is motivating! I look forward to being done with the A/C side effects for sure.

mamastewart-yes how ARE you doing?

I've got a new side effect in the last few days. My eyes feel like I've pulled an all-nighter ALL the time. Like I've got a pound of sand in them. I use the refesh eye lubricating drops and they work well, for about 20 minutes. Trying to up my hydration and just drug myself to sleep more if I have to. Last night was the first night I've had a good sleep, only woke up 2x (usually it's 4-6x). Oh and I lost a few lashes on my left upper lid...I have a noticeable gap between some lashes now. Could be related to the fact I let myself rub my eyes like crazy the other night. Bad idea. Ix-nay on the mascara from now on too.

LHL-my skin hurts over, but only the day and a 1/2 after neulasta. Like I've had a shut flot administered to every square inch. it's weird. I also had weird breakouts of acne on my head after chemo #1. when my hair fell out luckily that stopped. At this point it feels as if my skin doesn't produce oil anywhere at all and I notice the wrinkles in my face are markedly getting WORSE! The chemo and hormonal changes are taking place in full force right now. (( sigh )) No hot flashes or night sweats yet but I do notice I am getting super hot when I sleep now...one of the things that wakes me up constantly. Avoiding the hat for bed now is helping.

One of my friends on FB posted today how much of a 'bad' hair day she was having because of the wind and rain we are having in Oregon today. (trust me her hair is GORGEOUS!!!) In my head I was like really? I'll show you a BAD hair day. Pffftttt. Whatever.

Txsurvivor13

Hi there! I am new to the forum and this is my first post. I was diagnosed in September 2013 and had my first round of AC chemo on September 18th. I just finished my 3rd of 4 on October 30th. I have had the typical side effects. But the one that baffles me is the sensation of sore skin. Has anyone else had this?

Anonymous

Has anyone had left mid to lower abdominal pain sharp, not always present, eating sometimes makes it worse? Doc initially ignored it now wants ultrasound and said perhaps diverticulitis. Not really sure what that is and scared that it might be a cancer progression. Any thoughts? V

70charger

HVV I have been having those type of pains for the last 2 days. Thought it was just trapped gas. mine seems worse after eating. Bowels have been moving.

KBeee

luvmycanadian, welcome! I have not had what you describe, but a few posts above yours, lighthouselady described some skin pain.

HVV, I am not sure what regimen you ate on, but I am on TC, and I have had severe abdominal pain each time from days 3-6... this time through day 7. My doc pretty much ignored it and said to just call if it got worse, so I have just dealt with it with a lot of Ibuprofen. Today is day 7, and if it is still present tomorrow, I may actually call about it. The problem is that it is not constant like yours, so of course if they have me come in, it will be gone then...that is pretty much how it works.......

Anonymous

I completed ACx4 and am now done Taxol number 7 out of 12. It is not always present so can't get to the er to demonstrate the pain.

hockeymommy

hi ladies,

LHL- yahoo on taxol #2!! We only have two more to go!! I am starting to see a small light at the end of the tunnel. As for skin pain I have it too! Not really sure what it is all about.

Cougar- congrats on the baby!! I love his name!!

Well I am feeling pretty good so far after taxol #2. A little tired but no other side effects right now. Hope everyone is feeling well !!

knightzoo

JellyK-my chemobrain got better after a few taxols...maybe yours will too? Eating ice chips during infusion has helped with my taste buds.

So glad your counts were good to go LHL!

Hockeymommy-are you weekly taxol or dose dense?

I saw my MO today - I asked him about doing my first AC a week after my last taxol and he said YES. I'm sooooo happy!! That cuts one week out of my 20 weeks of chemo Still waiting on the genetic results, blood was drawn Oct. 8. Nurse is going to call the lab in the morning. I'm ready to start making plans for surgery and need that piece of the puzzle to make my decision. Is there a thread on here about lumpectomy vs. mastectomy? If anyone was given a choice - and you'd like to share why you chose one over the other, I'd love to hear (assuming I'm BRAC negative).

Taxol #9 tomorrow, bring it on!

hockeymommy

knightzoo- I am doing dense dose taxol. My end date is Dec 5!! Yahoo!!

lighthouselady

JellyK - the fatigue on taxol is way more extreme for me than it was on AC. Not sure if it's actually the taxol or just the cumulative effect since I've had six treatments total? I don't know. I hear you on the chemo brain, too. I can't concentrate on ANYthing. I'm a huge reader and I don't even have the motivation to read a book because it seems too overwhelming right now. I'm glad you're not constipated anymore. I was last week, but the last few days have been much more normal.

peacockgirl - I try not to get mad when people say stuff like that, because I know not everyone's problems are as extreme as cancer. However, it's really frustrating when it hits you like that. One time I had one of the softball moms complaining to me about how it was so hard for them to get to practices, she has this & that and church and whatever, and she said "I just don't think you realize how busy I am." This was about three weeks after I was diagnosed, and I felt like saying, "Really, want to trade my month for yours???" I know I have a long wait until my hair grows back, but I'm READY. I'm sick of my wig. I'm sick of my hats. I don't want to shave my head (I'm kind of sentimentally holding on to the bits of hair I have left) so I can't even go topless because I look like someone wearing a scary almost-bald halloween mask. LOL

luvmycanadian - I have the same skin problem. I didn't have it on AC, but I do now that I've started taxol. I mentioned it to my MO today at my appointment, but he didn't really say anything about it.

HVV - I haven't had any abdominal pain, so I'm no help. I will say prayers and think good thoughts for your ultrasound - I'm glad you are getting it checked out. Hopefully it's just a bad side effect and nothing more serious. I think this is something we're going to have to be conscious about for the rest of our lives.... wondering if every ache and pain is going to be cancer-related.

hockeymommy - We should have a virtual party the night of 12/5 :-) Celebration day for both of us! I'm glad you have the skin pain too. Well, not glad YOU have it, but glad I'm not the only one with a weirdo side effect. Taxol makes me SO tired.

knightzoo - Yay for cutting down a week!!! That was my big argument for doing dose dense... I get to finish four weeks early and that is huge! You should have your genetic results by now! Mine took just under 2 weeks.

Speaking of genetic testing... my mom got tested last week and today her genetics counselor called to say that Myriad (the lab) couldn't interpret the gene mutation number from my results - they speak a different "language" and wanted the actual report from the lab that did mine. Get this - MYRIAD did mine too!!! How can they not "speak" that language when they're the ones who did the test?!?!? Stupid. So I emailed her my actual results page from Myriad and we'll see what they say. Both of my grandmothers had breast cancer, so we're not sure which side it came from for me.

I'm feeling decent after taxol today. Just really tired. I told my MO about getting really bad restless legs last time during premeds, so he switched the benadryl out. Well, it didn't work. It was worse this time. I had to stand/walk for almost 2 hours. Needless to say, I didn't get to ice my fingers & toes. :-( I haven't had any nail problems (yet) or neuropathy, so I hope that continues, even without icing. The chemo nurse told me next time to tell them I don't want any meds like that. Since I haven't had any allergic reactions to the taxol, they can just put a "hold" on that order and not give it to me. Hopefully that will get rid of the restless legs during infusion. It's awful.

KBeee

LHL- They are probably giving you a huge steroid dose with the premeds, which could be causing it.

knightzoo, It is a big decision so you are wise to give it a lot of thought now; there is no right or wrong decision; it is what is right for you. For most people it is tough. For me it was easy. I did BMX. My reasons were...1. I was not well endowed. at all. If you take a lump, well...there really is not much left, so that meant the breast had to go. 2. If one had to go, I wanted the other gone because: a. I did not want one droopy breast and one perky breast; b. I am 43; If I got BC this young in one breast, I did not want to walk on egg shells waiting for it in the other, which I already had a biopsy on once prior anyway; c. I wear an airpack at work, and if it would not sit even on both sides, it would probably hurt my back. People have different experiences with surgery. Mine was a breeze. I was released the next day, took prescription pain meds one additional day, and took ibuprofen for about 2 or 3 more days. I went to my kids' national triathlon event 5 days later ... with my drains in my pockets . The tissue expanders are kind of like an iron bra, but they really do not annoy me at all. I am definitely looking forward to my new foobs 1 month post chemo!

lighthouselady

Kbee - glad you had such a good surgery experience. While I'm not glad I'm BRCA+, I am relieved that it takes the decision out of my hands pretty much. I'm only 40, and like you said, having it this young in one breast, chances are really good (especially for me) that it would eventually come back on the other side, so bilateral mx for me, too. I'm also having a hysterectomy at the same time, since being BRCA 2 positive means greater chance for ovarian cancer. Going to be a long surgery! My surgeon said she could probably save the nipple on the good side, but for symmetry, it would be better to just remove both. I'm struggling with that, because it would be kind of nice to have one with sensation, you know? But leaving that means leaving breast tissue that might invite cancer cells to visit. <sigh>

SpecialK

lighthouse - nipple sparing does not provide sensation at all - they core out the underside of the nipple - it is just a decoration. You would be better off losing them both and getting nip recon and/or tattoos.

knightzoo - there are a couple of threads regarding lumpectomy vs mastectomy - I will link. Here was my reasoning as I was originally a lumpectomy candidate. My lump was way over on the right side of the right breast, pretty close to the underarm. It was 2cm of both DCIS and IDC and I was a full B/small C - this was going to take a chunk out and I was concerned about the remaining nip pointing to the right and the side of the breast caving in so they could get a large enough area removed. I had more than 20 years of watchful waiting, needle aspirations, ultrasound guided aspirations, lots of lumps so self-exam was useless, a mammo every six months at one point, numerous ultrasounds, etc. My lump was not seen on my annual mammogram, so imaging was not reliable for me going forward. I knew that I would never relax if I did a lumpectomy, and left breast tissue behind since I had developed cancer in one breast already, so I requested a BMX and my surgeon readily agreed. Turned out that I was unexpectedly node positive, with 20 IST in the sentinel, but a much larger positive node further up - the size of a stage 1 breast lump. My positive nodes did not show up on any imaging either - including MRI, and were not enlarged or palpable. I also had ADH and ALH in the left side that was undiagnosed until post-op pathology.

http://community.breastcancer.org/topic_post?forum_id=5&id=811876&page=1

http://community.breastcancer.org/forum/91/topic/813768?page=1#post_3762516

http://community.breastcancer.org/forum/91/topic/813037?page=1#idx_6

Look at Beesie's post from June 13th at 4:22, it outlines some really great info on deciding.

http://community.breastcancer.org/topic_post?forum_id=68&id=806074&page=1

Srmill

luvmycanadian

If you get the neulasta shot after A/C, it can make your skin feel sore. I stay that way for 3 or 4 days after each one.

JellyK

My new battle cry :-)

lighthouselady

LOL I love it Jellyk!

alfranco

knightzoo

Thanks for sharing your surgery stories...and SpecialK - I feel like you are our group's little guardian angel. Thank you for taking the time to help us!

I'm pretty sure MYRIAD is the only lab in the US that does the testing. My patient navigator told me that their patent on the technology will run out soon and then more labs will pop up, hopefully making the cost more affordable.

FYI: I went to the dermatologist this week about a mole. I kinda thought they'd watch and see since the chemo should be killing everything bad right? She said actually I should be watching my moles closer because they can change faster during chemo. So heads up everyone on that!! Bummer, huh?

SpecialK

knightzoo - when the Supreme Court struck down Myriad's patent on the BRCA process other labs were free to begin their own testing processes. I think you can go outside of Myriad now, when I google Quest Diagnostics comes up on the first page along with Myriad.

I will just add - I was drawn to the Sept/Oct chemo groups this year - I have only participated heavily in a chemo group one other time and it was a Feb group, I think the year after chemo for me, I was Feb. '11.. In both cases it was because I saw a question that I felt I could answer. I think the reason I have participated with you Sept./Oct. ladies is because this was my time of diagnosis, Sept. 27th and I have been thinking that I am so fortunate to have reached the three year cancerversary - I remember how shell-shocked I felt and if I had answers to some of your questions I could allay some of your concerns.

lighthouselady

SpecialK is right. When I had my genetic testing done in August there were two other labs charging half the cost of Myriad, but that meant they were backed up where the test results would take two months instead of two weeks!

mankatostate

knightzoo- I had a lumpectomy (can't spell). I almost prepared myself for mast because I thought I would have the gene. Aunt died of BC and mom of overian...different sides of family though. Turns out I didn't and I still at that point thought I might do mast until my breast surgeon said of course you want a lumpectomy don't you?!...I trusted her and she seemed to think in my case saving breast was great option. My lump was smaller and I had bigger breasts. In fact I got a breast reduction out of it as I had a great plastic surgeon reduce the other to make them match. There is a law that insurance needs to cover that. I was in the twin cities at a breast cancer center. Now that I am months away from that... a) my husband who said it didn't matter now says he is glad I kept them. b) I too am glad I kept them. That is just me though I am not stressing over if there is more cancer or not yet...maybe in time I will and might change my opinion.

josgirl

LHL- in same boat on the hair I appreciate that I have some tufts (being generous here) that poke out of my hats. Makes me feel like I can fool some people. Foolishly thinking it will be a help when the rest comes back in. Haven't worn my wig at all. Too uncomfortable and always thinking it's moving around. But I got a few cute hats and while so not a hat person I am coming to like them!

Knight zoo - I had a lumpectomy. Mostly because I am a DD and had a lot to spare so no worries that they would be unmatched. But the biggest reason is I am 34 and really want more kids. And keeping my right breast intact allows for the possibility I may be able to breast feed. Granted there are a lot of unknowns in this but having a reduction (with umx) or bmx would be a certain outcome. Funny I always wanted a reduction and joked with a few friends this was my chance but at the end of the day I want the possibility of Breat feeding in my future if I can will it! But if not for that the decision would be more leaning towards a umx and reduction or bmx for many of the reasons the other ladies described. And I am still thinking of doing the surgery when I am done having kids depending on my anxiety levels. But also just in case this matters you also have to do radiation with a lumpectomy. Mine is a 7week treatment every day mon-fri so after all we've been thru it is a factor in the decision.

PeacockGirl

knight zoo..I was always given the option of lumpectomy or mx..both my surgeon and my onco told me they would have equally positive outcomes. The day after diagnosis I wanted them off. Both ..even the healthy one. But days went by, plastic surgery consult scared the hell out of me...i was told as triple neg I needed rads no matter what and plastic surgeon said radiated tissues would generally not support an implant so I would need muscle flap surgery or else the inplant would fall into my armpit. No way, as a fitness professional I need all my muscles. In the end I made the decision to do lumpectomy and treat the disease I have and not make a decision out of fear of future disease. I can always opt for bmx in the future, and like everyone says it is the decision we can LIVE with, and I came back BRCA neg. At this point I couldn't live with the idea of a mastectomy...all I did was cry. Reconstruction is no simple boob job and I wanted nothing of that. When I chose lumpectomy the tears ended and I personally felt more empowered. I am a Small b cup and Thus is my story. You will come to the decision that is right for you, trust your gut, talk to professionals and ppl that love you, the answer will become clear and you will feel right about it when you do.

VintageGal1111

Hi Lighthouselady

my skin hurts, to the touch & even in some areas when nothing is touching it at all. Kind of like skin nerve endings rather than a body ache. I think it is from the Neulasta shot. I get it the day after the shot for a few days.