Sept 2012 chemo
Comments
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Good morning ladies,up early to take my meds and have some lite breakfast. Feeling the normal queasiness. I am taking my Neulasta shot at home today. Got it via a prescription this time and my daughter who is a medical assistant will give it to me. Doing the claritan this time to help with bone pain. Told MO about nagging low back hip pain. She said if it wakes me at nite to let her know but probably Neulasta related. Just as a fyi to all and not to scare, but my friends in the medical world and other stage IV's have told me bone mets hurt the most at nite and will wake you. This helped me understand my MO's comment.
Chemo 4 was uneventful, blood counts down but were good enough for treatment. Glad no more red devil, but 4 taxol to go.
All my Taxol sisters - you begin steroids 24 hours before correct? Thats what my MO wants me to do.
Hugs to all :-) -
Jojo2373 - Congratulations on being done with the AC's!!!! I asked about getting the Neulasta via prescription, and was discouraged from it - I wish I had followed up, because they are costing me $1800 each, I find out now!! Aaargh!
I am interested in how the Taxols go for you - are you doing 4 treatments, 3 weeks apart? and what dosage are the steroids? My MO said you start the steroids the day before, and also take them the day of; to avert any potential allergic reaction. I don't know if I can stand the 50mgs they are talking about (steroids), I was up all night with just 10 mgs (after the A/C's).
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Aic,
I actually found the second treatment to be easier than the first, I think because I knew what to expect.
Alot of my anxiety about the first treatment was that i didn't know when (or if) the SEs were going to end. It was the conbination of feeling bad, and thinking that I would feel that way for the entire 18 weeks. However, with the second treatment, I knew that I would feel bad for a few days, but that it was manageable, and that I would start to feel better relatively quickly. I also knew what meds to take at home right when certain side effects hit, so I felt I was more prepared.
Good luck with treatment # 2.
For those who are getting emend....Just a word of caution. It is a very good medication for nausaea, but it is very constipating. Start taking stool softeners before chemo!!!
Have a great weekend, everybody!!!
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Shocked - mine will be dose dense every 2 weeks. My steroid prescription is 20 mg day before. It seems everyone's plan is similar but different.
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Jojo, I am on Taxol right now and I don't take steroids beforehand but I'm on the once a week for twelve weeks Taxol regimen. I get a little bit of steroids in my infusion the day of. The steroids when I did AC worsened my stomach pain (might be related to my celiac disease...) so my Dr tried to get me to the lowest dose then and seems like he was wise in picking the 12 week program for me. It sounds like you will be on a once every three weeks? and then it's probably a higher Taxol dose on chemo days so I can imagine the Dr starting you out with plenty o'steroids just in case. and CONGRATULATIONS! on being done with the AC!!!! WOOOOO!!!!!
Toastiecat, that Halloween costume suggestion seems pretty harsh to me! I think I would have blurted out "How rude!" or something like that. I'm not always good at holding my tongue. Better suggestions, obviously, GI Jane, Ripley from Aliens and, for the Trekkies,
Cheers everyone!
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Well, I've joined the bald club and not sure about it. I can't get over how drafty it is to wear nothing on my head. But it is so sensitive that it's hard to find the right thing to wear that isn't too hot or itchy or whatever. Wearing my scarf now and it seems ok. My sleep cap made a big dent in my head from the seam. I need to find something with spandex like a swim cap that is seamless. Hmmm. Anybody have something they love for at home? Thankfully my precious hubby took me to the salon and my stylist gave me the royal treatment even washing my scalp afterwards. I feel very blessed for that. Planning on dinner with friends tonight so the wig it will be. Hoping that is tolerable and not too cumbersome. A very rainy day here so I am missing my son's soccer game which he was not too pleased about. Just can't risk hanging out in the rain for now. Hate disappointing my kids. Feeling good this weekend and so happy for that! When you feel so bad, the good days seem so GOOD! So let's celebrate those while we can. Praying for low se's for all who just sat in the BGC. Hugs to all!
Becki
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I finished round two yesterday. I had an allergic reaction to the taxotere. As soon as the nurse stopped the drip and gave me Benadryl I felt better.
I came home and took a shower. My hair started to call out in massive chunks, so I shaved it off. Boy was that hard. I feel the same as everyone else. My scalp is super sensitive. I'm sending my husband out to pick up a running cap saw at Target the other day. Hopefully it will feel ok. I can't go topless yet, my kids are a bit freaked. I bought a bunch of soft hats from Headcovers.com that I love, but they are uncomfortable right now. I'm actually wearing one inside out right now because of the seam.
I am cleared for just half dose (8mg) of the Decadron this time. Last time they made me a bit crazy in the head. It may be worth asking your Dr. to adjust your dosage if you are having trouble. Mine said it is really important to take because it helps with how well you handle SE before Taxotere or Taxol during and after chemo.
For those of you finished with the red devil......I applaud you! You are made of some tough stuff! Hang in there ladies! -
Timbek, I'm wondering if a Buff might work for you? Some ladies going thru chemo really like them but I admit I don't have one. I've been able to just wear one of my bandanas at night without problem. I do need to keep my head warm, it's drafty like you said.
http://www.sahalie.com/jump.jsp?itemID=11441&itemType=PRODUCT&path=1,3,759&iProductID=11441 -
Good morning sisters!!! just had a quick question.......my lower back hurts ever since i got the Naulesta shot and it hurts every day i been in pain for 10 days no matter what medication they give me....is it because i had a small herniated disc...did this trigger to come back that was a year ago...i cant get up...it hurts so much everyday...
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JoJo great news you are over and done with the AC!!
Timbek head covers.com has some seamless hats you could try. I have some buffs I bought from a tiny retail store called Ardene's .....6 for 10 dollars and they work great. Or if you can sew, all you need to do is make some tubes the size of your head with stretchy material about 12-15 inches long. Tuck the end in at the back of your neck. MCcalls also has 2 patterns for headscarves for chemo patients.
I live up in British Columbia and the weather is starting to get below zero in the mornings and boy my head can get pretty COLD..I do not know how all the men with shaved heads can stand it.....then other times when the woodstove is going I can go to the other extreme of HOT....that's when I just go bald around the house....my DH is totally okay with it and even though I thought I would never be able to walk around like that...it doesn't even bother me any more.(at home)....
I guess as time goes on we just adjust with the situation. -
That's the truth - adjusting with the situation... Last night for the first time, I took my hat off in public, too tired and hot to care (we had been waiting on a cell-phone activation that took 2 hours+)... I am rather proud of myself, I must admit. It is getting easier as time goes by, I am no longer hating the sight of myself bald, finally adjusting, I guess.
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Becki i wear some knitted soft caps at nite. Very warm.
Allurbad, mine is every two weeks. It is an option as well as weekly or every 3 weeks.
Patricia, sorry bout ur pain. I hurt there too and just got the Neulasta shot. Ugh -
No doubt about it, people say the most insensitive things. I have had a few of those comments directed at me, and not only do they make me mad, that anger has a strange staying power I don't like.
That said, there have thankfully been a few priceless instances where I've gotten inappropriate comments that I've gladly welcomed. One of my dearest friends texted me the following when she heard I was off to my super pixie cut/shave. It read: Do tell- Ork or Sinead? I read it and laughed. (I told a small group of friends and family that laughter is how I'll get through this - so make me laugh, no matter how inappropriate the comment might be.)
She later assessed the new me in person and said, "Nope, not even close to an Ork. Your head's way too small. And you've got those straggler hairs. More like Gollum." We both cried we were laughing so hard. Temped to change my Avatar to Gollum.
Happy Saturday everyone!
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Jojo...but does it hurt all day every day???...My Onco said that it shouldnt hurt any more???
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Not all day Patricia, mine comes and goes
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I get taxol every 3 weeks with steroids. The steroids are terrible, couldn't sleep, very moody. My MO did give me a sleeping pill for the next round.
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Jojo my knees hurt more then ever now that I am taking the shots . I have always had nerve problems and the pain would go from my buttocks to my feet . Now it hurts me almost every day I spoke to my MO and he said we will check that later . I am praying nothing is wrong .
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Prayers with you Cherioo
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When life, Gollum, thats who I feel I look like!..lol..
Cherioo and Patricia I hope you both feel better soon. -
Hey everyone,I noticed a few questions about Taxol...I haven't had anything else yet but I do get Taxol weekly with Herceptin. At my first treatment I wasn't given steroids to take the night before and I had an allergic reaction to the Taxol. Now I take steroids 12 and then again 6 hours before treatment so in my case that's 9pm and then again at 3am. And luckily this does the job because I wouldn't want to have another reaction again. In terms of SEs, my only complaints are actually with the steroids! They keep you up so I was prescribed zopiclone sleeping pills. The steroids make me grumpy and they really make me hungry. Also, twice my face has broken out pretty bad...worse than as a teenager! Mybdoctor said it was an SE of the steroids. In terms of the Taxol, I get copies of my bloodwork every week and I noticed my WBC is starting to go down. But I don't feel tired. I haven't lost my hair (treatment #6 tommorrow). I am getting another heart scan at the end of my weekly treatments to compare it to the one before I started chemo to see if the Herceptin affected my heart before we start round 2 of chemo. I am starting FEC in December. Anyone else on that? What is that like?
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Hi ladies,
I had my second round of AC on Friday. I got ridiculously nauseous the first night and got sick but felt much better the second day. I made it to my conference to present my poster thank goodness. I slept so much last night, yesterday was so exhausting. However, today I am going to lay in bed all day and rest...so excited
. I hope everyone is doing well and dealing with minimal SEs!Justine
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Justine, I am so happy that you got to do your presentation. Rest today, better days are ahead!!
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Whats everyones's CBC's been running? Mine gets lower each time even with Neulasta. I think I barely qualified for AC #4. Mine were WBC 4.5,HGB 10.3,HCT 30.9, RBC 3.2. Platelets were good though at 303.
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Good morning ladies, I hope everyone is doing well, staying strong, and hanging in there.
I'm 3 days out from my second round of TCH, feeling ok, some weird stomach issues, more tired than the first round-has that been the case for others?
Hopeing the new anti-nausea meds and adjustments work and it won't be too bad.
Mariposa- how are you feeling this time out? thinking about you and hoping your doing better than the last time.
Timbek2- welcome to the bald club, I hope you are adjusting, for me it did get easier with time. Love your attitude about celebrating the good days! Also noticed you were from Peoria. That's where I grew up and where I am being treated, Peoria Surgical; Dr. Mammolito and Dr. Jones...Illinois Cancer Care; Dr. Thomas.
Justegan- glad you made it to you conference, rest up, relax, and take care of yourself.
Patricia & Cherio- thinking about you and hope you are feeling better
When I went to my Look Good Feel Better class, they showed up how to make a head cover by cutting off the bottom of the soft T-shirt, they said there were how to videos online. It looked and felt really comfortable.
Again, hoping everyone is doing well, minimal to no SEs!
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Butterfly and Coco,
Thanks! I am looking forward to resting today!
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patriciahurtado
Hi Patricia,
Just want to let you know what happened to me regarding the neulasta shot. I had my first one this past Monday, got the shot, went home and was fine the rest of the day and evening. Slept through the night, the minute I woke I had pretty intense pain in my lower back, and also into my hip and the joints. Now I never wake up in pain, so I know it was attributed to the neulasta. Had 3 more shots, got a little better each day, but the last day had a bout of nausea. Friday no shot, by Saturday I felt better, like myself. So now I go this Tuesday for 2nd A/C chemo. I'm not looking forward to it, but at this point now I dont want to postpone the treatments, I want to try to get this part over with. I hope the 2nd is better than the first. Good luck with the back pain, hope it abates.
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Is anybody else just SICK of having to ask for everything? I keep getting this "we want to let you set the pace", "I don't want to bother you", "call me if you want company", "call me if you want to talk", "call me if you need anything", but having to ask for EVERYTHING is such a drag, I just end up doing without. Since I went to work on the boats, people call less because they never know when I'm asleep, and I guess this is kind of the same, but COME ON! Let's have some participation, people!! (Can you tell, I'm sad from all this Chemo?). I'll be better tomorrow.
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Shockd - I know what you mean. I wish someone would just show up at my house and say, "I brought dinner," or "I'm cleaning your bathroom." It's so hard for me to ask for help to begin with, that it stresses me out more than just doing something myself.
I think it kind of takes people who have been in a tough situation to know this, that saying "let me know if you need anything," though well intentioned, isn't really that helpful.
I'm in graduate school, and my department just did something so amazing for me. I had lunch with one of my professors (a BC survivor) and she asked me if I had been to a nutritionist. I explained that no, I wanted to but my insurance wouldn't cover it. A few days later she emails me that she took up a collection in the department, and they're paying for me to go see one. I was speechless. So practical, so thoughtful...but I don't know if someone who hasn't been through this would have even thought of it, you know?
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Okay, a question for the ladies with kids: have you found any books or other resources you like that explain cancer/provide support to your kiddos? I have a much younger sister (turns 10 tomorrow!) who is having a tough time with my diagnosis. I've been looking around for books, but they seem to be mostly for younger kids, or specific to a parent with cancer. Any ideas? Thanks!
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Toastiecat: I have my 7 year old in a 6 week course called 'Wonders and Worries'. He is the youngest one registered and I find it very good. They meet once a week and they each put together a binder that they take home at the end of the course. There have been two sessions so far. The first one they got to know each other and learned about each other's loved one who had cancer. Then the teacher explained "confidentiality" and what they can and also what they shouldn't talk about outside of class. This past week was a crash course in what cancer is white blood cells, red blood cells, platelets, and what does chemo do. I was amazed at what my son was able to explain to me. After each session the instructor emails us what our kids learned.
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