September 2013 Chemo Group
Comments
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They say it helps with nausea....guess we'll see. She said taxol is a 3 on the nausea scale and A is a 5. I've had zero nausea with taxol with just the premed steroid.
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I've had zero nausea on taxol, too, and I'm even doing dose dense. For me the nausea on AC was about a 10. LOL But it was mostly just queasy feeling and total yuck mouth. I was only sick enough to throw up once and that was the night of my first infusion. Maybe more steroids do help and that's why I felt so yucky. LOL -
special K: yeah I have my last 2 chemos scheduled in the next 3 weeks (dec. 6 and dec 20), and I am afraid of flying in the condition that neulasta leaves me in (such horrible bone crushing pain!) and I would have to wear a mask, etc. fear of getting sick away from my home hospital. I've been so good so far avoiding even a cold and have never spiked a temp over 98.6. I've decided to plan a trip in January after chemo is done and before rads start, my friend will need more comfort then after all of this initial outpouring of support immediately after his death calms down. If anything it spurs me into doing MORE when my treatments are over, making the most of my time. enjoying things I love, saying NO to things I do not love... life is short no matter what, BC diagnosis or not. we could all keel over at the dinner table for whatever reason.
my eyelashes and eye brows are really starting to thin. I'm losing that contrast with my eyes and my face just looks flat, pale and bizarre. there's a look good feel good class early in December I'm going to check out. Mostly because I am completely inept at penciling in eyebrows and don't want to look like a clown.
I've challenged some friends to a bit of a 'streak' of walking or running at least a mile a day between thanksgiving and new years. a few took me up on it. if anything it keeps me motivated. i'm pretty good about getting 4 days of walking in per week now but on neulasta SE days i'm very bad about even moving. so this puts a good challenge ahead of me. I actually JOGGED a block on thanksgiving evening and surprised myself I could do it (but then I was hella mad about my friend's death and just wanted to push myself). I would have jogged further but my HUGE infinity scarf was bouncing everywhere and hitting me in the face. I was all bundled up and not exactly dressed for running.
ps-as for nausea. I definitely had to take Phenergan for the first 3 days after AC. I had Zofran but didn't take it at home (not a fan of shunting my serotonin) I haven't had to take ANY nausea meds for taxol. and actually here lately I haven't had to take Colace anymore either. that's an improvement. but then I didn't have to live on Percoset for neulasta pain this last round unlike I did for taxol #1. here's hoping the last two taxol treatments are like #6.
pps-I agree with LHL. It is SO odd how everyone's ONC is treating us different. I too only had steroids in my pre infusion meds, not in pill form that I had to take before infusion and days after. My dose was about 26mg on A/C. They have lowered it to just 8mg on Taxol. I definitely notice a HUGE improvement. No major mood swings, days of crying jags. Rageful thinking is gone. if anything knightzoo as for Xanax. it helps immensely with those mood swings!
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Peacockgirl, I am glad you are able to make the trip in January. There is always so much support right away in the beginning, it can be overwhelming. Being there once the attention is gone, the people are gone, the help is gone...in the long run, that will be so much more helpful for your friend. Unfortunately, missing the funeral does not help you to have some of the closure. I am so sorry you have to deal with this. -
peacock - I did not find the Look Good class to be all that helpful - the lady that conducted it was obsessed with showing us how to make a hat out of a t-shirt, but not so helpful on the make-up, even though she was a make-up artist. Here is a link to some stuff from Sephora that may make it easier for you:
http://www.sephora.com/brow-envy-brow-shaping-defining-kit-P279509
My brows thinned but did not fall out so I used this, it is like brow mascara:
http://www.sephora.com/tinted-brow-gel-P187202
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Peacock girl-
Does Zofran hinder serotonin?? Is that what you meant?? That would explain my not sleeping well after chemo for days...I think I took Zofran 5 days...
My closest look good feel good class is 45 minutes away...not willing to go that far in case not worth it...my eyebrows are still here...
I am amazed at how my leg hairs keep growing- fast- and my nails and underarm hair but the hair on my head is falling out...why????!!!!!! -
yes Audra zofran is a seratonin inhibitor. In contrast the Elavil anti depressant I'm now on is a seratonin booster. Special K that us kinda funny about the tshirt into a hat project..thanks for the links I'm going to need to get adept at fake eyelashes here soon too! -
omg! that is why I was so depressed and worried and glum on the Zofran! Oh my! interesting!
Good luck on fake eyelashes, share how to use them as might need some as well..:) -
peacock - she was SO into it! It is not that hard, but she was fumbling around. She brought t-shirts and had very dull scissors, it was a mess. Here are the instructions, and it really does look cute and the hat is comfortable because it is t-shirt fabric.
https://www.facebook.com/video/video.php?v=126130780852828
I only wore fake eyelashes a couple of times - I just used a lot more eyeliner and darker eyeshadow, darker lipstick and big-ass earrings.
Here is an interesting link - these seem to be made for those who have no eyelashes:
http://www.blinkiescosmetics.com/pages/About-Blinkies.html
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i just had this conversation with Hubby. I don't think I will even bother with fake eyelashes. My eyes are very sensitive and water all the time (even before chemo), I doubt I'd do very well with them. My bottom lashes are gone and I only have a few on the top left. Hopefully they'll start growing back soon since my last tx is coming up. -
lighthouse - your lashes may cycle, so don't be surprised if they come back and fall out again. This did not happen to me but the eyelashes have a hard time getting back into the rhythm of occasional loss, so sometimes they do this. I had Taxo-tears also and used waterproof eyeliner pencil - this one:
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Hi All,
My break between the ending of Taxol and the beginning of AC came at the perfect time. I actually had a bit of energy over the Thanksgiving weekend end. We hosted our family get together yesterday. Hubby did the vast majority of the work. Things went great and I think everyone had a really nice time. I go for BRCA testing tomorrow and have my first AC on Tuesday. I'm getting nervous about the AC. -
specialk, thanks for the info, i will definitely go to sephora for that brow kits looks great! Boy i sure need it i look really strange. My brows almost gone eyelashes just about gone, my eyes are watery and every morning i have to put warm compresses on them to get rid of the crusties, im starting to look like the walking dead!
I start taxol next week, i just hope my energy is up, i find the sides are still lingering after my last AC which was on nov. 17. -
Peacock: So very sorry for your loss! Sending big hugs your way!
Eyebrows/lashes: I bought the SmartBrow product and I think it works really well. I have maybe a half dozen actual eyebrow hairs left on each side but I do have those little short fuzzy facial hairs. I think as long as you have those, this product can make them look like eyebrow hairs. I don't know what it would do if you were completely bald though. I would post a pic but I am not even in taking a shower mode today let alone putting on make-up. It takes a bit of practice to not over-do it and end up with Sesame Street Bert eyebrows, but it looks natural to me and not like an eyebrow pencil. It also stays on until you wash it off with soap. I also used the SmartLash product before and it worked pretty well to help my eyelashes grow thicker and longer. I just noticed that I have a couple clumps missing on mine
I was really hoping that I wouldn't lose them. I don't know that I would use fake ones; that seems like waaaaaay too much work, plus, knowing my luck they would just fall off somewhere anyway lol. I have some super long green ones that I used for Halloween last year, do you think that would look good?!
I have been totally getting my butt kicked over here. I had a nice break from the skin/muscle pain but again, I spoke too soon lol. I am a gigantic bruise covered in a sunburn. I could barely sleep the last couple nights because it hurt so bad. It is from the nape of my neck all the way to my waist and partially down my arms. It is like wearing a short-sleeved shirt. A short-sleeved shirt of pain lol. It hurts all over but those areas are 100x worse. So weird. I also have been dealing with night sweats that make it impossible to sleep! I wake up freezing and hot at the same time. My room is really cool so I don't even know why I am sweating. I don't think it is hot flashes. Not sure what is going on or how to make it go away!
I managed to get one of my papers written. I honestly don't even know what I wrote; I hope it is good. Now I just have another paper to write and THREE huge tests to study for in the next eight days and then I will be DONE! I am so excited to not have to deal with school for a month. I want to clean my house and organize and do holiday type stuff and bake and get a tattoo! LOL, end of semester cheers. -
KBee,
Round 5 last Wednesday for me and I had a nice dinner with family on Thursday, but have not eaten more than half a light roast beef sandwich since. Tried the stuff I can usually keep down (potatoes, a little chili, bread, berries)... to no avail. Must just be the cumulative effect of chemo. So glad there is only one more round for me. -
I wanted to ask what kind of deodorant you guys use? I remember reading about parabens (is that right?) when I first found out about my diagnosis and how they are found in a large percentage of breast cancer cells so I was wanting to avoid anything with that in it... Who knows, everything is bad for us, right? I was just wondering what actually works well and is safer to use and okay for rads. -
I switched to Toms deodorant. I saw that recommended by a lot of people, and Jasons. The Toms I bought at CVS or Walgreens, the Jasons I had to order from Amazon. Neither one has aluminum in it, which is the big no-no for breast cancer. -
what do you mean aluminum 'no no ' for breast cancer? Does it cause it? or what?? -
Jasons is also available at Whole Foods.
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Venting alert.... I am TIRED of feeling so damn SICK!! In three freakin' days, I can't keep a gosh darn morsel down without a fight!! Trying to keep liquids down is even worse!! And I absolutely hate that feeling in the back of my throat like there is something stuck. I know it is just an agitated esophagus... but it is really agitating me!!
Question... does anyone else get a rash where skin touches each other during the first 72 hours after chemo? It is like a burn where the chemicals are leeching out and there is skin to skin contact (like where one's breast touches the chest when not wearing a bra. This is the second time it has happened and it is extremely irritating!!
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Ugh! I am so maaaaaad! My former sister in law (my ex-husband's sister) was just here for a visit after spending the weekend at her parents. I have no relationship with them as they have done some pretty nasty stuff to myself and my children in the past and I was just finally done with the drama. They haven't seen me or my kids in two years. My kids' dad hasn't seen them in over 3 now- his choice. Anyway, I got to hear about all the gossip they are talking about me: someone saw a picture of me with no hair (can you believe what she looks like?), how many breasts am I going to lose? (who's damn business is that and why does the conversation always come to that first thing? I don't know how many people have asked me that off the bat: are you just having a single or double mastectomy? It irritates me!) My ex was there with his friend's daughter that he is adopting when he hasn't even seen or provided for his own kids. Oh, and the really great one: what is she going to do with the kids if she dies? Well maybe if all those idiots weren't psychotic horrible people then maybe I would HAVE some place for my kids to go if I die. But the fact is that I don't. My grand plan is that my ex sister in law takes them temporarily until she can find a wonderful adoptive home for them (she can't take them forever because she has 3 of her own and two are special needs). How sad is that? That is the very best that I can do for my kids, and I am pretty sure that won't even work legally. I wouldn't put it past my ex mother in law to try to get them just to spite me. God help me, I WOULD come back from the dead to kill someone before I let her destroy my kids like she did her own. She would just split them up anyway; she has always rejected my oldest because he is "different" (special needs). Now I am just so worked up about it and I don't know what to do. I mean, I should have something in place and all this chemo and surgery is dangerous, but what do you do when you just don't? I really didn't need this right now. I hate having to think about this kind of stuff and I hate being the topic of other people's gossip. And I hate having cancer! I am not allowed to die. EVER. Sorry I just had to get this out. -
KjSimpson: so sorry you are having trouble with food. Your chemo is different than a lot of us, is carboplatin the culprit? and the thickness in your throat, that honestly sounds like a little bit of allergic reaction to me. And with the rash you describe on your skin on skin contact, that sounds like allergy too. Is there something you might be reacting to? I only say that because I suffered with chronic hives and angioedema (facial swelling) for YEARS! I would get that throat swelling thickness too although thankfully it never progressed to anaphylaxis, it just felt like I had a golf ball in my throat sometimes. They never could really figure out what was wrong with me only that they suspected it as an autoimmune problem. it slowly dissipated and went away around 2008. I sometimes wonder if that immune system malfunction somehow contributed to my BC. Will never know.
I've developed a bit of a productive cough the last couple of days. Temp still normal but it's weird. Husband keeps naggin' me to call the onco office this weekend but I'm like why? They will ask if I have a temp and when I say no, and if the cough isn't dry or accompanied by shortness of breath ...they will say nevermind. I know that. Have noticed Taxol makes me swell up in the evenings. Hate that. Oh hell let's be real... I hate all of it. At least my appetite is good. I can eat tons of anything. Good thing I have lots of drawstring yoga pants.
19 days until the end of chemo. I have decided to have champagne on Christmas Eve and Red wine on Christmas Day. Heck it's what gets me through the day just thinking about it.
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Peacockgirl - I am eating everything in sight, too. With AC I lost a few pounds, and on Taxol I've gained them back and then some. Ugh. -
Mamastewart-
I am SO sorry and I totally get it. My own parents haven't spoken to me in 16 years and sided with my ex husband years ago, whom they hated the whole time I was married to him...all that to say, everyone that is from my home town or past always has to regal me with what they say about me and on & on...I totally get it! Infuriating!
Met my now husband 16 years ago and we actually chose his old college roommate for our kids to go to if we died...good reliable family good with money, Christians, etc...anyhow -- just thinking for you what about a good friend? Instead of family?? We have so many great friends that are way nicer, kinder , reliable compared to our families..
We have some relatives far away out of state we visit and see and love but still had the friends for our will to parent the kids...anyhow just a thought...but
YOU ARE NOT going to die! You are going to make it through this and be EVEN STRONGER than you ever were! These meds suck and cause all sorts of scary effects but you will be around a long while and raise your kids yourself!
SCREW those gossipy mean people! -
MamaStewart-sorry to hear that. I know what you mean. They have no lives of their own. They should have stepped up and try to help you in some way. It's not easy, you are a strong woman and we are with you spiritually. We are going to make it. Don't let them take your peace.
Kj- I agree with Peacockgirl. You may want to call your Dr. Hope you feel better.
I am just having too much heartburn, have taken my zantac but still feels a bit strange.
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Well I had my first taxol treatment this past Monday. Did fine then next day got my neulasta shot. By that night my body was starting to hurt. Got through work Wednesday with some bone pain. I have to say when the pain did set in my bones and joints from this one it was almost as bad as labor pains. I was in excruciating pain from my waist down to my toes. Managed to go to my sis in law for thanksgiving and eat but my husband had to take me home right afterwards. Pain pills did not work, nothing worked. Finally got it somewhat under control with stronger pain pills. Thought for sure it had to be the taxol but nurse on call said it was the neulasta shot. I have had 4 previous to this one and never had bone pain. At times i couldn't even walk. How am i supposed to work like this? If this is what I have to look forward to for the rest of this I think I would prefer to stay on the A/C. Neuropathy started 2 days after treatment. My hands and feet stay numb and tingly all the time now. Shoes make it worse. On top of all this I am completely broke out in a rash over most of my body. Horribly itchy. Nurse on call said it is not from taxol but that is the only thing I have done differently. Went to immediate care and the doc did not want to give me a steroid to get rid if rash because she fills that I am already taking enough other meds. I go back to work in the morning and I am not sure how that will go.
Just wondering if any of you ladies have had these reactions. Is this normal? -
srmill ...I had aches and pains with neulasta on AC 1-4 but nothing like its combination with the first taxol. That was excruciating, I was barely upright for 3 days. The second taxol (chemo #6) was more like regular old neulasta...so I am not sure if the horribleness of chemo #5 was the two drugs of taxol and neulasta together, the AC hangover or just my body's first reaction to taxol. I hear it doesn't go into solution well so they dissolve it in a lot of nasty solvents which our bodies react to. With taxol #1 I told my husband my feet felt like I was wearing shoes 3 sizes too small and I was barefoot! I have had a bout of tingly fingers with each taxol but they don't last long..maybe a few minutes each time. I'm sorry you are having such a bad time of it, I hope your next infusion isn't as bad .....as I have experienced. Lighthouse lady had a similar experience, taxol #1 was terrible where 2 and 3 were not as bad. Ugh I would never want to go back to AC... -
srmill - I don't believe it when they say the pain is from the Neulasta. It may be from the COMBINATION of Neulasta and taxol, but not the Neulasta by itself. I had the Neulasta with all four of my AC treatments and never had one ounce of pain. With Taxol, from days 3-6 I am in horrible pain, and it's like you said, nothing really works. Peacockgirl is right, though - the first one was the worst. My latest one (3rd) was almost bearable. :-) I'm sorry the neuropathy set in so quickly for you. I haven't had any at all up until yesterday when the toes on my left foot started to feel numb. Maybe you could try icing your hands and feet during chemo next time to see if that helps. I had restless legs so bad during my treatments that I couldn't sit still long enough to ice, but I had planned on it. I may bring my frozen peas this last time at least for my feet.
Anyone else still having sleeping problems? My body is just so so tired and yet I can't sleep. Mostly it's because my restless legs syndrome acts up constantly, but sometimes I'm just so awake I can't get to sleep, even though I'm exhausted. That was one thing on AC... I took so many nausea meds that I was sleepy all the time! LOL -
ugh sleep. I slept so well as a healthy person. Can't even nap now. How am I even functioning? So tired but can't sleep. I've read anemia can cause insomnia plus that lovely crash into the chemo pause wall can't be helping. Lighthouse lady I've read anemia exacerbates restless legs too...so sorry you are dealing with that. I would get those sometimes pre BC but usually when I stayed up too late..kinda like my body telling me to go to bed. But I feel for you they are miserable. It's bad enough getting BC why can't we catch a break and at least sleep our way through this miserable treatment??? -
Thank you Audra and alfranco. I just deleted my post. It really doesn't belong here. It doesn't belong anywhere I suppose. Just stupid drama and I am guessing I am steroid-crashing. I was just really really upset. I am really sorry about your family Audra. I will never understand how people can turn their back on family like that. My kids can't go to my family because the only person that would be willing to take them (and I would feel comfortable with taking them) just can't. As far as friends...well depends on your definition of a friend. Someone who visits occasionally or you visit, exchange phone calls, checks up on each other, is in your life with some regularity? Well, I guess I really don't have any of those either. Even my ex SIL and my relationship has pretty well gone away. I don't know if it is the cancer or what, but I will blame it. It was just a series of events in my life that has really left me totally isolated; from moving here from out of state, to being in a marriage where I was kept from people, to myself working out of town, to having a special needs kid and then being on my own to where I really couldn't get out much...yeah, I really don't have any friends. I have acquaintances, but that is really the extent of the depth of it. And as far as taking my kids, well, my kids would likely be just as good off with getting to know a total stranger than with one of my acquaintances; they would know them just as well, you know? I just hate that I have been sitting her thinking about this crap. It sunk me, too, that my ex has let himself go even more and now I know that I am the only one my kids have, without a doubt. Regardless if he is "adopting" someone else's kid or not, he can't even take care of himself and I guess he is now an alcoholic (his words). I just kind of hoped that he would get it together for our kids. I hate that I am literally all they have. It terrifies me now more than ever. But you're right! I am going to be fine and raise my kids myself and not worry about those bastards! I just really need to get a support system and a LIFE lol. I just really don't know how. I have been living under a rock for so very long.
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