August 2010...anyone starting chemo besides me?!
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Sweeney: That made me laugh out loud
I too hate my wig. It wasn't cheap but still looks so fake and it seems so out of control. I don't know. I just can't seem to get it to look more natural. I am trying it on over a head of hair so that could be part of the problem. I called my hairdresser today to schedule getting my head shaved about 7 days or so after the first treatment. My hair is long so I'm going to donate it. I work from home so I expect to wear a scarf or hat most often.
Wherria: I agree with Calamtykel. They are probably thinking that since you are on chemo that if it is something then the chemo will get it. But I can understand that for your own piece of mind it might be better to know now. Maybe you can explain that to them. Knowing that it is nothing to be concerned about would give you one less thing to worry about right now.
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Just a reminder:
Chemo is tough in the short-term but don't forget how many millions of people are alive today because of it's life-saving benefits. My BIL is 14 years alive since a lung cancer dx, subsequent surgery and chemo. The little trouble we have to go through now is going to translate, for the bulk of us, into many more years to come. That, in and of itself, showcases the value of this short-term inconvenience. I wish the medical community had come farther than this by now but, at the same time, I am grateful we have come this far. Additionally, not one of us on this thread has a choice so we can only try to make the most of it!!!!!!! Rabbits out of hats!!!!!!
As for cells, please, our body TOTALLY knows how to repair itself and it makes new cells constantly and for us that means HEALTHY cells. Don't forget what else chemo could be doing away with as an added, albeit unknown, benefit. Our body will give us new cells but it does not know how to handle invaders which is where chemo comes in. I like to see it as a fresh start.
For all of those worried about healthy cells being killed, remember all those folks who have been dousing themselves with cell-killing narcotics, like heroine, for years and years and they are still trucking. No, our situations are not the same but if Keith Richards is still alive after 40 years of sucking up every illicit drug he can get his paws on, I am only pretty sure we are going to be ok!!!!!!!!
Liz
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LIZ - I am by no means a medical professional. I also read about the Claritin on these boards and thought - why not. I asked my Onc who did not endorse no deny me the option of taking it. She sid there are no clinical research to support that it helps, but she too had heard of other patients taking it getting some relief. I have read of some who did not take it with their fist shot, suffered, then took claritin with their second and did not suffer. SO, I figure I'm not going to keel over by taking it and if it helps why not. I think it has something to do with changes in bone marrow pressure and inflammation and the anti-histamine in claritin. See http://www.medscape.com/viewarticle/566300 fr a more clinical take on it. Hope it helps you. I too am a wus when it comes to lasting pain.
Michelle
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Hi Mlv2356---Regarding the Dexamethasone--I took that as prescribed during chemo. I am guessing it helped with my nausea--although I was pretty sick right after chemo. I did notice a real energy drop in the last few days. I know that my doctor mentioned that this is the time when your blood cells drop the most so I'm not sure if the lack of energy is due to the Dexamethasone or the blood cells.
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Mlv: i will totally chow up some claritin....crap, I will make smoothies with it if I find it negates pain from Neulasta shots! It just seemed interesting to me.
Question: I know there are some of you that are self-administering Neulasta. When I asked my onc's nurse yesterday she asked me if I was a nurse!!!!!!! She was being cocky and so I questioned the need for a degree to jab myself with a neulasta shot!!!!! How did you get to the point of being able to do it yourself? I only ask b/c one day is chemo, the next Neulasta and I live 30 minutes from the hospital, have to park in a city-type, multi-level garage and walk about 1/2 mile to get it!!! I am not relishing this idea but surely I will do it if I have to. Just wondering how some of you got on self-administering.
Liz
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Lizzy - be SURE to check with your insurance company if you want to self administer....mine denied it and I even had a real oncology nurse friend who was willing to come over and give it to me. Stupid insurance! It's like a $3000 shot too! The doctor was totally willing to let me take it home, but she said "you do NOT want to do it unless your ins is going to cover you 100 percent on it."
The shot goes under your skin - it's not in a muscle. So I don't think it's difficult but I don't think I'd attempt it myself.
By the way, thank you for all the encouragement about cells and chemo. It's difficult to be positive knowing that your body's being assaulted by this stuff and all the strange changes which take place at this time.
My pain hasn't been bad at all from the neulasta and it's been about 26 hours since i had the shot, so we'll see how tonight goes. Remember a very warm bath in epsom salts can do wonders too! I've just been "blah" today and most of that has been sleepiness and my tummy.
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lizzymack1 - my dh is a diabetic and gives himself insulin shots daily. I asked for a RX to have him give me the shot at home and after the 1st one the onc ofc was willing to do it. we have 3 already loaded needles in the fridge. he watched the nurse do it the first time and it is not any different then what he does daily.
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lisaenglem: Sorry to hear that you also had a bad reaction to the Neulasta. It can really hurt, can't it?! Like you said, I found that with the bone pain moving didn't make it worse or better, but moving around was very hard for me because I was having sever muscle pain and spasms at the same time. Boy was I glad when pain from both started to subside, though it wasn't until about Day8! I tried the claritin as rose rx brought up. Don't know if it would have been even worse without it or if it just didn't make a difference, but I'll be taking it again next time, just in case!
LadyinBama: Yea for getting the drain out!! What a long ordeal you've had with that!
Calamtykel: I'm sorry to scare you about ITC pain killers, but let me just say again that different drug cocktails require different things. Advil may be fine with the regimen you're on, even though it's not fine for the regimen I'm on. My point was just to encourage everyone to make sure they've talked about it with their docs, so that everyone knows what kinds of OTC drugs are or are not safe. Still... sorry.
mlv: You were asking about the Decadron (brand name for dexamethasone). It helps on several fronts, mostly nausea and inflammation that causes pain. I have wondered about those of you who have said your onc's are choosing not to use it, because from my reading it is a first-line defense/prophylactic against the more severe nausea that can happen immediately following chemo and in the first few days afterwards. I would be interested to know why these particular onc's are against using it. It does have side effects (many possible ones in fact, as with any drug -- you might look at drugs.com or rxlist.com, both reputable sites if you want more info). One is certainly a feeling of being wired (this is true with any steroid) and possible insomnia. Others can include depression, weight gain, muscle weakness/discomfort, acne, headaches, and sweating. Keep in mind that many of these (and other) se's happen when people are taking it consistently over time, not for a few days every few weeks. Still it effects people in different ways. I had no insomnia from it, nor any feeling of fatigue when I stopped it (the fatigue had already set in!). Then again, I am only on half of what is usually prescribed because of other health problems. So, maybe, what do I know? I think the most important thing to keep in mind is that you should closely monitor any se's and let your onc know about them, because if you're having se's that are related to the Decadron, a dosage adjustment might need to be made.
I was feeling better for a few days, but starting yesterday and throughout today (Day 17) I have not felt well. Very fatigued, a little nauseous, with swollen glands in my neck, an earache, a mild fever... I don't fell exactly sick, more like I'm getting sick. It's disappointing because I was hoping for a nice week or so of feeling better before next Tx. Now I'm worried about having a fever, and worried that if I do really get sick I won't be able to have my next Tx as scheduled. Oh well, just gotta wait and see. I'm still feeling much better than I was days 3-10, so I am entirely grateful for that, and not wanting to worry needlessly. What happens will happen. I will just take good care of myself, and assume the best!
Good luck to those of you starting tomorrow, and for everyone else, one more day down! May it be a good one!
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It is very very simple to administer the injection. It comes in a little ice chest from the pharmaceutical company supplier. I have to pay a $200. co pay for each shot.
The needle is very very tiny, very short. You wash your hands, wipe in circles with an alcohol wipe take the little guard off of the needle. Put the little needle on your skin, I use the side of my midriff buldge, just not in the middle front. So you have the little needle sitting on your skin, push it in, it is so easy. Then push down on the plunger and the meds go in. You are done Tada! Total amount of time about 3 minutes maximum start to finish.
The nurse who taught me said most people who are self injecting do it just like I do. Others when doing the shot sort of throw the needle right in.
I noticed Nuelastas instruction sheet said to pull back on the plunger to be sure you aren't in a vein but the nurse didn't mention that.
I too am thrity minutes from the hospital so I prefer the home dosing. I hadnever given an injection to anything but a turkey, ina roast pan before.
I hope this helps and the nurse you spoke to is a droid.
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mlv2356, I take Dexamethasone in iv drip and for 3 days after chemo. Onc says it is so that you don't reject the chemo or have an allergic reaction. I would check with your Onc on that one. Hope your second treatment goes well. I had my second treatment on Monday and am doing pretty well. I have an anti-nausea patch that I put on my arm the day before chemo and leave on for 5 days along with zofran as needed. The patch is called Sancuso. I think they gave me the patch because I travel so far for treatments. Has anyone else had the patch? Well wishes to everyone. Coleen
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Mlv2356 - I get an IV drip of Dexamethasone with my pre-meds, but I don't take it orally. I have TypeI Diabetes, and the steroid really messes with my blood sugars. As it is I run really high blood sugars for about 2 days after the tx. If I took it orally, too, it would be worse. I haven't noticed any insomnia from it though.
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Ginger and Zenith: as easy as you both make it sound is as easy as I thought it was but I will just go back to the hospital for it. I am sure a $3000 shot becomes $5000 after I get it at the hospital!!!!!!! I better bring my own Tylenol or that will go to $6000!
Reminder::: Guys the closer I get to starting, the more things are coming to me! Shower curtain liners: most people have glass but if you don't, it is important to change the shower curtain liner "regularly." What regularly means I don't know! I am going to do it every 2 weeks but I live alone and don't allow anyone to shower here!!!! Boyfriend comes over and goes home and that is that! Also, for those of you with families and more than 1 bathroom, one should be exclusively used by you for the duration and get some Tilex to clean the glass each time you are done.
I am sure I will have more revelations as my date draws near! All the scans are done by the 23rd and I think my onc is ordering rapid results so I believe I will start late next week.
I hope you are all having a good night-
Liz
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Ah yes the Dexamethasone (sp) must be why I have been experiencing road rage the last two days:). Anyway, I went to work today, a little squeamish, but around 11:00 started to feel pretty good. One of you recommended ginger chews. Found that 1/2, letting slowly dissolve is a miracle drug. I had not taken anything for nausea and got too hot yesterday and was sick. Decided not to do that again...I have a plethora of nausea meds to choose from. I sympathize with calamtykel and her tummy. I was only sick for a bit before I got some meds down. But those heaves are nothing I want to experience again. They come from your little toe and all the way up.
Anyway after my good day at work (I was so proud) DH came in (we call it "nutting up") over a denied BCBS bill for $3,000. I did inform him I did not get C on purpose. HMMM. My lovely daughters brought me a card and a pink sock monkey.
All in all a good day. I will get the Herceptin topped off tomorrow. Made the big annoucement at work today and had lots of hugs, but some advice/stories that I did not need. Went to "Look Good, Feel Better" last night and saw some really neat ways to tie turbans. Also a nice bag of makeup and cleansers. Thanks to all of you for your support and info. Beth
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I've just got to share what happened when I got my drain out - I hope I don't gross out anybody. The fluid was down to almost nothing the last two days, so the nurse said come on in. When she pulled the drain tube out - it turned out not to be finished draining but just clogged up. Stuff just flowed out of my side. It got my leg and jeans soaking wet. The nurse said that had never happened to her before. Leave it to me to have something weird. Anyway, she finally mashed and mashed and got a lot of stuff out and when it seemed to have stopped, she put a big gauze thing on it that looks like a Kotex and bandaged it up and said I should be fine. She said it was good that it came out since it was clogged; it could have caused a worse problem.
When I got home I called my other surgeon who had said to call him when the last drain came out and setup an appt to get my port put in. Well, he is doing it in the morning! I have to be there at 7 a.m. At least I won't have long to dread it. I don't see the onc until next Tuesday; so I guess we'll setup a chemo start date then.
Good luck to all starting soon. I pray for all of us daily.
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Anybody have some good ideas of drinks to help with some nausea? I am drinking lots of water but would like some other ideas....just to help with some slight nausea and a bit of sore throat (more like acid reflux). Thanks guys
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Good luck to JUSTDUIT, KAZMTAZ, and IOWASUE44. I will be thinking about you all tomorrow! Best wishes for a good treatment. Thanks to the ladies on the boards for the support!
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Rachel: I bought 20-6 packs of BOOST! Not joking. They were on sale at CVS and I figured once I start, I am going to have my days. We desperately need nutrition so I figured liquid nutrition was best. I am sure Special K, Ensure etc... all have some sort of nutritional drink. Of course, there is always my favorite, GATORADE! Just my thoughts, China!
Ladyinbama: that nurse must be brand new or s/he was lying when they said that never happened before!!!! That happens a lot with JP drains. What a nut job! If it never happened to that nurse before, then how the hell did they know exactly what to do?! That happened to me...not to that extent but some came down my side when the premature drain had to be pulled. My PS has the best PA in the universe and she knew exactly what to do and did not make silly remarks! I am so glad it is out for you now and you can now join me in the chemo dance! I think you and I will probably be starting right about the same time.
Don't forget girls...
JUSTDUIT, KAZMTAZ AND IOWASUE ALL START TOMORROW...so please send good vibes their way. Best of luck to all 3 of you. Can you imagine what experts, sadly, we will all be by Halloween?!?!? I know, you all want my face on the avatar to print and throw darts at! I feel the love! Experts by Halloween!!!!!
Your FEARLESS Leader!
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Beth: that is really nice that "Look Good, Feel Good" gave you a grammy's-style goodie bag for attending!!!!! Seriously, though, that knot tying part would be of serious interest to me. Someone else here, whos sister owns a wig shop, was told by her sister one trick is a ponytail holder. I think I like that b/c I don't have to worry about slippage. I do have a small neck and head!!!!!0
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Okay before I head off to bed a few things come to mind...but I can't remember who specifically asked, sorry!
- Good things to drink- I lived on gingerale. Ginger helps the tummy and it didn't taste like poop. Everything else did.
- In Canada I think it's pretty much protocol to give yourself your own Neulasta shot. A nurse teaches you and/or a friend/partner and then you're ready to give it yourself. So any nurse saying you need her is full of it. Just tell her about how it's done in other parts of the world.
- I bought an exercise bicycle and stationed it downstairs in front of the TV, what can I say I"m a lazy exerciser. But 30 min in front of HGTV is NO hardship at all and it makes me feel great. My mom who is an RN says that it's just as beneficial to break that 30 min into two sessions of 15 if it gets to be too much.
- For those of you having issues with drains and ports and the like I'll be thinking of you wishing you the very best. XOXO
- As for the steroids before treatments, again in my Canadian Cancer Centre up here in chilly Ottawa, they will not administer my TC treatment without my having taken three rounds of steroids previous to treatment and then three rounds post treatment. My onc said that the effects w/o the steroids are "unbearable".
Okay so there's my thoughts for what they're worth. Sleep tight guys. Especially those who start tomorrow! XO
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MLV, regarding the Dexamethasone, I too was told it is the first line anti-nausea med for chemo, so I will def be taking that! I had it IV last time but will be taking it orally this time, starting tomorrow morning.
Colleen: I too had the Sancuso patch, although I put mine on the day after chemo and leave it on for seven days. It must be good, because I had no nausea for my first round. I even had to fight my insurance company to cover it because I didn't want to mess with a good thing. If it ain't broke, don't fix it!
Calm, I am sorry you are still feeling bad, I hope you feel better soon and get at least a couple of good days before your next round!
Sweeney, Thanks for the chuckle. Aren't those little ones adorable!!! and SO HONEST!
As for me, today was a little better on the hair loss. Day 19 and I can still get away with my own hair, although my hairline is WAY UP on my head! I am hoping to get through the weekend. No wig for me, I have one but I am not comfortable in it. Just feel like I am lying to everyone. It is not me even though it looks just like my old hair (I cut all my hair off a couple of weeks ago and donated it, so even though I still have my hair, it is not my "old hair"). Somehow can't get around it being fake hair. Right now my goal is to go to my second treatment Friday with my own hair as the nurse told me that everyone has lost their hair by the second treatment. I want to be the first to show up with my own hair!
Well, good night all. Good luck to all those who start, or repeat, tomorrow. And to all those suffering side effects, may you wake up feeling great tomorrow morning!
Debbi
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Hi ladies, i thought I posted this this am but I don't see it and now I am running out of time. I have a neat chemo bag some long ago school pals got for me bought it fill with chemo needs, just wondering if any of you that have had a treatment or two having any suggestions of things you took or needed and didn't have with you that you wished you had please let me know I have my 1st TCH tommorow labs at 8:20 long day Onc said plan on 5 hrs. and she wants the 1st one at the large hosp. she is out of to be where the 1 st treatment is and it is an hour and 45 mins. there one way so probably a long 9hr. day after the 1st one Onc travels to the local hospital on Fri. and I will go there. Im thinking that is a LONG time for me to sit still lol. Thanks for an suggestions.
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Also best of luck to my chemo sistas starting treatment tomorrow !!!!!I will have plenty of time to pray for all of us. G night
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I only had to pay a $40 copay for $30 total. anyone still having surgical pain i.e. pain in the breast (or non breast area) and/or pain in arms? I am still taking 1-2 percocet a day because it hurts and wearing the postsurgical camisol hurts even tho it is soft it presses against the foobs.
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Hi girls! Looks like I'll be joining you. I met with my oncologist for the first time today and I'll be starting TCx4 on the 27th. I was happy to receive a low Oncotype score but with my young age and a positive node my Dr and I both feel that chemo is the way to go. I look forward to getting to know you all. Hi to all the July Mastectomy ladies too! 0
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Lady: something else occurs to me: it seems like the drain may have been removed prematurely as it was clogged. Make sure you take notice of the foob area and if it is getting red etc... as there is still fluid in there and your body may not be able to naturally get rid of it. Please be careful about that as this is the reason why chemo was held up b/c I got an infection and was on 1500 mg of Cipro and Keflexin also, after 2 weeks of Cipro did not clear it. Just an FYI as it popped into my head as I am going off to bed!
Sweeney: the recumbent bike and HGTV! No better pairing!!!!
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LADY - I had a drain removed too early due to the bulb acting up. Every 3-4 days I went in for a syringe draining. We would get 100cc or more in the beginning but after a couple of weeks it dwindled to about 20 ccs after a 4 day period. I would check the jiggliness of my underarm and call to see the doctor if it got too jiggly. Hopefully you don't need to have this done, but thought I'd let you know of this option.
Thank you ladies on the Dex input. There is some confusion on my part as to dosage, when to take etc but will try to clear it up at my tx tomorrow. Thanks again. Michelle
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So, I finally have a start date: next Wed. 8/25. Eight rounds - 4 AC and 4 Taxol.
I'm terrified.
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I start chemo at 10am. I took 8mg of dexmethasone 6 hours ago. I was so nervous to take the steroid but I am doing great! I feel like I can breathe better and have tons of energy. I take dexmethasone again tomorrow morning before I leave. I will get some labs and see the doctor. Then I will go to the chemo lab at 10am.On Friday, I get the neulasta injection.
I will take 6 rounds of Taxotere and Cytoxan. I am nervous about it. I have a lot of people praying for me. I will let you know how I do.
Good luck to others starting chemo today. I hope it all goes smoothly!
God Bless,
B
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My hair is coming out all over the place especially if I tug even a tiny bit. I put some in a bag so I can compare whenever it comes back. My hair is a bright brilliant white, no color at all. I just got used to it being white a couple years ago and stopped coloring it. It is exactly my Grandmas hair and I grew to love it. Now I am unsure just how or what to do to get the rest gone without shaving my head.
I also bought a few scarves from ebay and just do not have any idea how to tie them,
Ginger Brew is a good drink as well as sugared ginger slices. Really help me with nausea.
Two days past chemo and feeling okay. I was taken off of one antinausea drug that was ginving me a nasty headache and feel much better now.
God Bless and keep praying for all of us.
Night Ginger
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Well, I appear to have turned a corner!
I marathon slept last night. I can't believe how much I slept yesterday during the DAY! More than I ever have in my entire life. I think it was the neulasta shot too. I fell asleep around 9:30 last night and woke up at 6:00. I did get up a couple of times in the night for bathroom breaks and to keep on the anti-nausea stuff. I'm not letting THAT go quite yet!but this morning I took a pill at 6 and I'm okay now, an hour later.
The only disturbing thing is that I woke up with a pain in the side of my face where I had a root canal two months ago. However my nose is also stuffy in that side and I'm PRAYING it's sinus related or something with the chemo and not some sort of abcess or something. I guess time will tell - I shudder to think about it. But I know I can't be the first person......so I'm trying to just enjoy feeling better this morning and not worry too much.
Think I'm going to get the courage to call my hairdresser today and make an app't for Saturday if possible for a cut down or shave down.........
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