Cytoxan Taxotere Chemo Ladies- February/March 2013
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So far I am working, but I don't think I could if I wasn't a telecommuter working a split shift. It's ideal, in that I have time for a nap in between segments of my shift. It feels like working with a flu-bug that is kept at bay only by Ibuprofen.
I was able to go to church yesterday and have been able to go out with my hubby walking the dogs for about 15 minutes so far each day.
My first infusion was last Thursday 3/7 and my next will be 3/28
This is going to take some persveverance, but it could sure be worse.
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How is everyone doing?
I had a better day today than yesterday, but still not easy. Yesterday I had weird random sharp pains in my head, ears, throat, legs, back & hips. I have spells where my ears ring or "roar" and pulsate and hurt. Today I had a little of that but not nearly as bad. Had a bit more nausea today than previously, but still keeping food down. The nasty taste in my mouth was much worse today.
Still I was able to put in 8 hours working and go out to walk the dogs with the hubby.
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GailAnn- Did your onco give you any anti-nausea meds to take after you had chemo? I was given a prescription for Phenergan to take in the event I had nausea after I had finished taking my 3 day post chemo dose of Zofran. If you are still feeling nauseaous, you can call your onco and maybe have your meds adjusted. It's okay to call the onco any time day or night to get some help with the side effects. Just don't think you can ride the side effects out because sometimes they can get out of hand rather quickly. As for the yuck taste, your taste buds have gone on vacation for sure. You may want to write down on a daily calendar, the side effects you are experiencing so you can tell your onco/ infusion nurse how you did with this first round. Hope you feel better!!!
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Thank you Melrose. You know I have experienced very little nausea and today it was just occaisional waves of it without actually ever getting sick. If it does return or get worse, I won't hesitate to call and they did tell me I could call anytime.
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Hi GailAnn I too had sharp pains in my head that came and went. I braced myself for a wicked headache but never got one and the pains came and went so fast I didn't need pain medicine. Going in for treatment number two tomorrow morning and hoping I dont have another reaction! Also having a neulasta shot for the first time the day after. I take claritin anyway for allergies so hoping it helps I've got several months of it in my system already
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Melody46, yep, what you describe is like the pains I've had. Sharp and fleeting. Hope all goes well for you today with the second treatment. I think there's definitely something to the Claritin for the Neulasata-induced bone pain. It sure seems to be working for me.
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I wish the Claritan was working for me (for the bone pain). My MO just had to give me a heavy duty pain med. (Dilaudid). Never took more than an Extra Strenth Tylenol in my life until all this BC mess started! Now my hair hurts at the roots. Going to get a shorty, short haircut today and have my cranial prothesis styled by my beautician who is a 4 year survivor. I know the hair will be coming out any time now. Are we having FUN yet?
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Carolyn, my scalp is hurting and itching too. That just started today.
I wonder if the Claritin would have worked better for you if you'd had it in your system before the Neulasta shot. As I recall you didn't start taking it until afterward?
I've had more sharp, stabbbing random pains all over today and stomach pains and cramps. Don't know if I'll be able to work my last four hours today, but I'm glad I've been able to work as much as I have so far.
Oh yes, loads of FUN!
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Oh, and I should add that the Claritan may not deserve all the credit for the lack of bone pain. I am fortunate to be able to take NSAIDS and have been on ibuprofen or Aleve around the clock. I don't like to think about the long term effects of that, but this seems to be all about choosing the lesser of two evils.
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Hi GailAnn- I find it helpful to keep a little on my stomach during the first few days post chemo. Just little bland things like some yogurt, pudding, protein drink to ward off the nausea. I've only had fleeting nausea twice and it was when I woke up during the night on an empty stomach. I'm guessing you got some Zofran for your nausea. Don't be shy about taking it if you need it, but it does constipate. For that I take Senokot S the night I have chemo and then colace on other days to keep stools soft. Some people get diarrhea instead of constipation, but i never have.
I also experience the random stabbing, fleeting pains everywhere the first couple days post chemo, then they go away. I haven't needed neulasta, so these are likely due to the taxotere. Tylenol usually takes care of the miscellaneous aches and pains for me.
I just had my second round last Friday and was much more tired days 1-4, this time. My MO said that would be the case. I did apparently faint when I got up during the night on Sunday when got up having belly cramps. No great harm done, but I did get a couple of small cuts over my left eye. Morale to that story is to get up slowly and dangle on the side of the bed when you get up those first few post chemo days.
The worst is past you- every day you'll feel better and stronger. The 3rd week you'll feel pretty normal before your next go round.
Melody46- hope your day for round 2 went smoothly!
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I'm going for round 2 tomorrow. Also have to have the Neulsta shot on Friday. I'm hoping for minimal SE's. I have the Claritin ready this time, I hope it works.
TMM-60: I'm sorry to hear there was more fatigue with the second round. Even more sorry to hear you fainted. Thanks for the warning, I will remember to take it easy getting up.
Gail Ann: The scalp pain for me has been pretty intense. Kind of like someone has pulled my hair really hard or I've had it in a really tight pony tail for days and just let it down. My hair was fairly long so I'm not sure if the weight of it makes a difference. Even now that I still only have a thin layer, it still hurts and is sore to touch. I haven been able to wear a full wig yet because the scalp is too tender but did have luck with a halo wig and hats. I'm looking forward to that to ease off. I hope it does for you too.0 -
GailAnn - Yep, you are right. The Claritan was not in my system soon enough. A bit of an over sight by my MO at Texas Oncology Assoc. in Flower Mound. I know better now though. I go for T/C Chemo Round #2 on Wednesday, 03/20 and the shot on 03/21 so I will be sure to have it in my system BEFORE the infusion and will take it for 7 days after the shot. Because of many pre-existing GI problems, I cannot take NSAIDS. What is interesting though is I take Carafate for reflux disease before each meal and at bedtime and I have not had 1 day of nausea or any sign of the need to vomit. I do faithfully take Docusate Sodium (the generic Walmart form of Colace - a stool softener) and Mirilax (like Metamucil but completely dissolves in any beverage with no taste and no thickening). Again I buy the generic Walmart version for the cost-savings. I put the Mirilax in my coffee or tea each morning and take 2 of the stool softeners at bedtime. My night stand looks like a pharmacy! Having my hair cut short today did cause the scalp pain to go away for now. My beautician Alice who is also a BC survivor gave me some oil to put on my scalp too but my Sister put it in her purse and I am not sure of the name as she is asleep right now. I will let you know though. I did get 2 cute wigs also and Alice did a great jobs cutting them and making them look very natural. I am a natural brunette so I got one the color of my hair which she cut short and spikey and I stepped out with a blond short one too. I intend to see IF blondes really do have more fun! I also picked up some head scarves and a couple of berets in case the wigs get annoying.
TMM60 - sorry about your side effects, especially that fall. Thanks for the advice about getting up slowly. I hope you are OK.
And to the rest of my fellow warriors, stay safe and well and keep those tips coming as we all continue on this less than anticipated journey. I am very glad to have found all of you even though the circumstances pretty much stink!
Good night all and may tomorrow be a better day!
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OMG I feel like I have the flu too ! I have had a cold which the OC is aware of but ache all over my body tonight. Will almost be glad to go in for labs on Friday to see what is going on. So ladies....when do the SE start to subside? Im five days out from my last infusion and two days from the dreaded Neulasta. No nausea at all tonight...Praises to God !
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Hi, I hope your TC#2 went smoothly. Im on week #2 after the first infusion (on a 3 week schedule). Wondering if you noticed a difference after the 2nd infusion that you didnt the first, either better, worse or the same. My side effects were relatively mild, wondering if they are cummulative or this is what I should expect.
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@TMM60 I hope your TC#2 went smoothly after they got the reaction under control. Im on week 2 after the first infusion (on a 3 week schedule). Wondering if you noticed a difference after the 2nd infusion side effects that you didnt the first, either better, worse or the same. My side effects were relatively mild, wondering if they are cummulative or this is what I should expect. i mostly had basically just 'flu like" symptoms including mild nausea, body aches, headaches and bad taste in my mouth. Now after 8 days I feel actually "normal" for the most part.
Still waiting for the hair to go though......I heard on TC it is usually around day 14 after start of treament. Anyone have experience on "when" for them?
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All good information from everyone. I have my first treatment in the morning at 9:15. I took the steroid pills and a walmart brand claritin (cheaper) today and will take the same tomorrow. I'm hoping i feel well afterwards because I plan to go wig shopping. I have the shot on Friday.
I didn't get the steroid energy people have mentioned on other boards. Maybe they are referring to something i will get tomorrow. I do have heartburn tonight and assume its feom the pills ive taken because i normally dont have heartburn.
I should really get some sleep. 5 hours until i have to be up and ready for the trek to the cancer center with my DH.0 -
Milo5 - for me it seemed as they have the date almost down to an exact science. On day 13, my scalp start feeling weird (weirder) really tingly and a little more tender in spots. On day 14, hair started falling out, not in giant clumps just randomly all over the head. Day 15, there was more. When you really notice is when you wash it. Prepare yourself, it was really hard. By day 16 when I washed it, there were piles, more piles on day 17. All the while hairs were falling out all during the day. Everywhere, I had ALit of hair nd it was pretty long. I would guess the amount of hair you start with will determine how long it would go on and the amounts you will see. I cut mine on day 18 to my shoulders, next day above my shoulders and then yesterday to just below my chin, I can't bring myself to buzz it, some girls do and it gives them a sense of empowerment, I don't think I could do that, it's not for me. Today is day 21 and its really thin on top. Not really a part on top, just a bunch of scalp. I forgot to mention that there was alot of crying and an anxiety attack in there too. It was the first time through it all that I really had cried. Luckily though I have had just enough on the sides and back to wear some cute hats and still look decent. I'm holding onto it as long as I can. The scalp pain can be pretty intense though. It's so tender. My experience has been difficult. I've had the hardest time with the hair loss. I wish you luck, strength and grace to get through it and deal with it. Just being told you will lose it and trying to prepare for it, doesn't mean that it's easier when it actually starts happening. Remember though, it's only temporary (I'm still telling myself this) it won't last forever and at least you know the chemo is working which is why we are all here in the first place.
I have my 2nd treatment in 3 hrs. I couldn't sleep either. The steroids do affect me, I took klonipin (actually 2 of them) but the steroids won the battle this time,
Good luck to all - glad to have a place where we can all share our experiences, I do think it helps to get that extra support.0 -
I'm starting to feel nervous now. Got my first chemo session at 09:30 tomorrow. Will also be trying out the Paxman cold cap. Not sure which I'm more nervous about. What did you guys have for breakfast on the day of treatment? Is the clarityn everyone's talking about for the immune boosting shot 24 hours after chemo? The nurse told me to take 2 paracetamol and that's all. I can definitely get hold of clarityn if that will help. Anyone know why it helps? I will be injecting myself with the immune booster. Is that what you're all doing? I know it's not readily available on the NHS over here, just privately. I read a book by Professor Jane Plant which suggested drinking both apple and fennel juice and also carrot juice - about half a pint of each - after chemo which apparently helps you hold on to your hair. I shall be drinking both of these when I get home and will let you know how I get on. Apparently I've got to take conditioner in which they will apply to my hair before they put the cold cap on. Another question I have is whether anyone is taking supplements alongside their chemo treatment. My oncologist said he didn't mind what I took providing I drop everything 3 days either side of chemo. I intend to take lipospheric vitamin C, colostrum and beta glucans. Would be intested to hear what everyone else is taking in a bid to boost their immune system. So jittery today, I can't sit still. Yikes.
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Roadshow my dr told me its ok to take a once daily vitamin and it does help a little with energy and makes me feel proactive. I had 2nd infusion yesterday and had another reaction-couldn't breath well turned bright red and heart rate jumped to 112. It wasn't as bad as the first time but now I'll be doing the last two on a very slow drip. On the bright side I''m noticing not as many side effects today, no head pain and no pins and needles in the bladder. Cant wait to see what the neulasta shot is going to do since this will be my first one. I am only having a 4 mg dose because my white count is up to 13, maybe if I'm lucky I wont need one next time, we'll see. I take claritin daily anyway so I might bump up to an extra 1/2 tablet at night today and the next few days.
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I went to get my first Chemo TX today and was told by my MO that I don't need to do chemo. I was blown away to say the least. I've met with him several times. He changed my TX plan after seeing my Oncotype score from AC+T 16 weeks to TC x4. He sent me to get a port last week, I filled my prescriptions, bought a wig, started taking the steroids and received the follow up call reminding me of my appointment. It's so unacceptable to walk in today and be told out of the blue that he no longer thinks I need chemo. I went back to my BS and she opened the case files and saw where he put notes saying I was the one that wanted the chemo in the first place and he had told me I didn't need it. That never happened...how could it happen when he gave me RX to fill? I didn't sleep last night in anticipation of today. I'm exhausted.
I am meeting with a new MO tomorrow so she can review my case and offer her opinions for TX. Wish me luck in finding a competent MO. I checked her background and it looks impressive so I'm hopeful.
Everyone have a great night. This lady is heading to bed for some much needed relaxation.
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Lolalou, that is mind blowing! I can't imagine the emotional roller coaster! It's hard enough to make the decision to do chemo in the first place! Your diagnosis is very similair to mine, except that my oncotype score was 21. I hope and pray you get some good solid advice and can make a decision you feel at peace about.
The_roadsho, I am taking a multivitamin daily, 2000 units of vitamin D, calcium citrate and L-Glutamine. These are not necessarily so much to boost the immune system as they are for overall health including bone health.The L-Glutamine is an amino acid that is supposed to reduce risk and severity of neuropathy and I'm only taking the day of the infusion and following week. My oncologist is aware of everything I'm taking and has approved it all. He specifically recommended the vitamin D. He did warn against taking large dose of vitamin C which is hard on the gastrointestinal system, since chemo is hard enough on that. If you are going to be getting the Neulasta shot, I highly recommend the Claritin for the morning of the shot and a full week after. I don't think they know exactly why it helps, but I think it somehow reduces the inflammatory effect of Neulasta on the bones.
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Hi everyone, so happy to find this topic. I began my first of four tc today. So far I am feeling pretty good. I am trying to stay as positive as possible, hoping this will scare off the side effects ; ) will take Claritin in the morning, have my shot tomorrow afternoon. Focusing on staying hydrated. Wishing you all the best of luck in your journeys!
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LW122713 Thanks for the info on the hair loss process. My oncologist actually DID say that amazingly with TC it is on day 14. I had another friend who had pretty short hair that when it started to come out (flying around the car when she drove) she went in the shower and just shampooed over and over and over, scooping up the hair and putting it outside the shower until it was all gone.
I think we as women idenfity with our hair, with our cuts, colors, perms, straightening, stying, and I think it is really hard for us (I KNOW it is for me) to lose that. I also felt that until my hair goes, I dont look "sick" to the outside world. Im carrying on my life as normal. However, once you are in a bandana or scarf or wig, people look at you different. Im was worried about those pity stares. But now, im on day 10 post chemo, and I still have all my hair, I feel like im READY for that next step. It just has symbolized to me getting closer to the end.
I know there will be tears, and my BFF and my daughter are going to go with me and the woman who has cut my hair for 30 years and is a dear friend will buzz it (waiting till the "clumps" start and I was told by the wig place to have them leave 1/4 inch when they buzz as it will be much more comfortable for getting used to the wig.
I have added Claritin to my list of pre-post chemo drugs, they give me Dexamethazone for days 1-3, Compazine and Ativan for nausea (which I have only needed a few times).
Im pretty close in schedule to several of you on this thread, chemo #1 as 3/5 and chemo #2 is 3/26. Good luck to all.
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Gailann (and Everyone),
The oil that I got from my beautician Alice is called Moroccanoil Treatment. It is supposed to take the tingling and hair root pain away.
Check it out on-line at www.moroccanoil.com
The bottle also has a telephone number: 1-888-700-1817
It is made in Israel but Distributed in the US by Moroccanoil, Inc. in Los Angeles
I rubbed some into my scalp for the first time just now before bed. The instructions say to rub it into a wet or dry scalp (hair). I think tomorrow I will use it after my shower when my super short hair is still wet.
Hope it helps!
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Lolalou - you need an MO that you can trust. I changed my MO when I went for a second opinion. They both left the chemo up to me and said it was my decision but liked the way facts were presented by the 2nd. It never hurts to "shop around" to find an MO you're comfortable with. I too have stage II a grade 2, my tumor was much smaller but it had spread to the sentinal node. My onco was 20 so we were on the fence just like you are. That's a large dose of mental anguish he paced on you to only switch it up at the very last minute. So sorry you're having to go through it.
Milo-5: The second round took much longer because I had an llergic reaction to the taxotere. They had to top call the doc and then add more steroids. I had purple discolatuons across my breasts kind of looked like bruises and purple/red splotches on my face and neck. Finally they went away and the dosing began again. It took 41/2 hours but other than that it was ok. Less burning with the cytoxan this time but I was prepared and loaded up on the ice chips. Today, just a little tired. Hope to get a full dy of work in with my halo wig/hat combination. Neulsta shot is today at 4 but have jut taken Claritin so fingers crossed on less bone pain this time.
Good luck to all today. With minimal SE's!0 -
Lolalou- that is just horrendous what happened to you! I'm so glad you are doing a second opinion with a different MO, hope you find her to be a much better choice.
I'm a day 7 on the second round and my head stubble from my day 14 buzz is falling out. My scalp is itchy. I gave it a good rub with Dove body wash and a washcloth in the shower this morning, but still lots of stubble left. I wish it would just fall out already! ARGH!
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Went out with my BFF (a guy who is not my husband but my best girlfriend who happens to be a guy) and had a glass of wine/appetizers and then we joined my husband at my sons baseball game..... having a great time with all our best friends, high school varsity baseball at its best, we were winning, then.... a "hunk" of hair came out.... dammit! Somehow I still hoped it wouldnt happen.
Made my excuses and came home and tried on both my wigs and, right now, I hate them!.....
Having a bit of a pity party...... shoot! Tomorrow going to the beach with five girlfriends.... then it will be better.
EVERYONE of us needs a pity party once in awhile! :-D
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