Chemotherapy for Stage IV
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Welcome Lattie...
YEP it is 334am steroids and I slept from 8ish til about 1230 and have been up since then.....will take benedryl to go to sleep in a few, it is quiet in here....watching CNN, it is interesting.....
well just went to the bathroom and WATERBUG, I have lived here 13 years and NEVER have seen a bug other then 1000 leggers, omg, feel bad but the wb went into the toilet.
chemo was ok they had a phillies party with hot dogs, potato salad, macaroni salad, chips, popcorn, sodas, baked beans, sourkraut, chili for the hot dogs, cake, brownies, cookies, veggie tray.......the oncology unit is so wonderful to us......got chemo down to 5 things plus zometa....slept from 8 til 12.30 am and have been up since then....they have the party every year, actually I moved my chemo til today cause of it, lol..
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Thanks terry and Glenna. Terry, I did AC in 2010 and it was really hard on me. But I made it through 4 dose dense tx. Are you taking emend for the nausea. It's amazing and really helps.
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Latte: I did not have steroids for meds at home after the infusion. I did need a nausea med, but not a lot. I had mild to moderate nausea. I used compazine for the nausea. I forgot to mention that I was given two Tylenol with the Benadryl when I went in for the drip as pre meds. Neuropathy was a side effect for me. I hope things go well for you. Oh, I had Taxol once a month. Jean
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Hi ladies,
Latte I have done Carbo, and Taxol. My stomach hurt all the time, very tired so needed to rest a lot, constipation use miralax it works. You take it everyday. Fingernails started falling off turned brown. They were ugly. Lost my hair 4 times. This time I am on CMF and have not lost my hair. I do treatment every Wednesday. I went to the hearing Dr. and got tested. I started having a hard time hearing things. I did Cisplatin and I know Carbo is the sister. This drug some tell and some do not but you can loss your hearing. I lost 40% in both my ears. The hair follicols that are located on and behind your eardrum are long and bring the singal for vibration and sensitivity. So mine are not long anymore and they are short. These do not grow back. It is amazing what I can hear now! They are so small and no one even knows I have one. I do Zometa for my bones. It has the same side effect for the jaw. I have been on it for 3 years and no problems. The first infusion I got flu like symptoms and that was awful, after that it never bothered me again. As far a taking care of young ones. I would see how you feel and see if you have someone available just in case. I asked people from church, my friends and they would come and help me take care of my granddaughter. I wish you the best and hope you have none of these issues with chemo.
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Thanks Padiddle. You make it sound doable!
Thanks Elizabeth for the info. I really hope I dont have all those SEs but at least I know what to possibly expect!
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ebann sounds hard.
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Hi Ladies..I was wondering if red devil (adriamycin) has affected anyone's eyesight. I have finished 4 (3 week cycles) and 2 more to go. I now have double vision and its getting really hard to see to drive. It makes me dizzy and nausea. My onc said that it can happen and will regain it back when I am finished.
Thanks so much for your help.
Terry
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Hi Terry: I did not have that side effect. Wish I could help. I hope someone will have more input for you.
I would like to know what "Reggie" means. I've been seeing that on the boards and I have no clue what people are talking about. Curious mind wants to know.
Had Abraxane #10 Monday, so I've just started my fourth month on it. Nurses are having trouble getting blood drawn from my port, so they could not get enough blood for the monthly tumor marker. They are going to try again Monday when I go in for treatment. Anyone else have trouble with blood draws from their ports. The nurses have me go into different positions and a flow of blood starts, but quickly stops. They have a hard time getting enough for the CMP and CBC. Any helpful tips?
Jean
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Padiddle - are you on warfarin? I am, 2 years now...but very very low dose 1mg. I've seen what the nurses have to do to pts who's ports plug up. The other thing is the flushing...my nurses have 3 syringes they flush me with after tx every 3 weeks. Sounds like you have been doin Abraxane every 2 weeks? If so, the warfarin is only thing I can offer up. Hope they/you find the answer to keep your port functioning
.Terry - Have not had that tx but the CTH did affect my vision also. But it did go back to pretty much normal. I went to get new glasses 5mos after tx I think. Very very little correction from the previous 2 year checkup.
Latte - I had same se's as many of these ladies on Carbo/Taxotere/Herceptin. I was on the steriods, given antihistimine in pre-drip and I don't remember what all else. Did get neulasta shots too. I was told to take a benedryl and 2 ibu's night of tx and for 2 days thereafter, so 3 doses. I forgot a time or two and the se's were much worse. I too lost my hair, hearing seems OK, my nails lifted about 1/2 way down, looked awful, smelled bad...but they grew out. Weaker but I have them now. I kept OPI Nail Envy Original on mine during my entire tx. I too took something when needed for nausea....but always had ginger tea, gingerale, gingersnaps before I'd take the compazine. OH...not sure if they told you, but the tx's are cumulative. I thot after my 1st...4 days of ick...then I was up like 'nuttin to it honey'. #2 it was 5 days, #3 longer etc etc. Near the end I was down for almost 2 weeks. OH...and TRY to get up, even with help, everyday or every other day at least, and walk around the house...even 5 mins. It's hard to do as you won't feel like it, but really is beneficial for your aching bones. I got dizzy alot, fell once, well more like crumpled to the floor, early in tx...after that...my DH made sure someone was here with me while he was at work. I can't imagine have little ones, but think Eban has good advice. It's OK to ask for help...many good people out there want to do something but don't kno what, so dont hesitate to let family/friends kno what you'll need...k? Good luck and keep us posted!
Eban - had not heard of the ear thing. Very interesting. I have not been checked, but have no 'base line' either. Just feel like my little bit of loss is from getting old...LOL. Maybe some of you others just starting out should get a 'base' hearing test before or early on in tx...I wud had I known about this. OH...and I too do Xgeva for bones, same se for jaw, but no problems so far (about 2 yrs).
Blondie - sounds like a fun fun party and worthy putting off tx by a day. LOL! Glad you found an onco team you like...that is sooo important!
Keeping you all in my prayers and sending positive energy your way,
Sue
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Hi Glenna - I'll 2nd that HOORAY! What does the neurotin do?
I have a question. How many IV's TP's have stopped Herceptin, how long ago, and what, if anything, has happened since stopping it? I've been on herceptin almost 2 years now, my onco wanted to go 3, but LVEF rate is down. If it doesn't pop up on next text at end of May, we will stop it. Kinda scared...any input wud be appreciated! I've been to the TP threads, but so many are NOT IV's.
Love & Prayers,
Sue
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My port gets balky every now and then, so they do a super flush at the end of treatment when that happens. It also helps if I relax my shoulders during the draw - my nurse has to remind me frequently as I do tend to tense up, and the blood return just STOPS. She showed me. Of course, then I got all squiffy, as I'm blood and needle phobic.
So here's what I've learned about throwing up during treatment. Waste no time with the dinky emesis basin (two words: splash back) - go straight to the trashcan. They usually have one for trash and one for medical waste at each chair. Choose the medical waste can, as it will have no stinky stuff in it, just a lot of tubing and spent bags, normally. Should you choose the regular trash can, and some one has left an old sandwich in there that may have been tuna fish, you might just barf more. Lesson learned.
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Padiddle, Reggi means regression
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Hey Jennifer and ladies,
The onc switched my meds at the last second and I'm on Abraxane instead of Taxol. Heck and I did all my homework on the Taxol.
Jenn I was sitting in the chair before I got hooked up searching for Abraxane when I found this thread. I located the trash can right away just in case - great advice. Glad I didn't need it.
After Abraxane #1 I feel a little light headed (could be from the nerves and no food) a little achy in the joints and a funny feeling throat.
I've only been home about an hour so I'm kind of waiting on the bomb to blow.
Would love to know any ones histories and experience on Abrax so I can know what to look out for.
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Thanks Jo! I've been wondering what that one meant.
Thanks Sue! With my first port, I was on Coumadin. This port (power port) no blood thinning med was offered. When I mentioned that I had taken Coumadin with the first port, the nurse said they inject Heparin which is suppose to keep it from clogging. They do flush it a few times when I go for treatment. (After the blood draw and when they are done with the chemo).
Thanks Jennifer! I'll try relaxing my shoulders. I thought about taking a baby aspirin once a day to see if that would help, but not sure if I should or not. Sounds harmless though.
Johnsl1: I've been on Abraxane and it hasn't been too bad for me. I don't know if you are getting monthly drip or weekly. I get three weeks on with one week off. I've just started my fourth month and had my 10th treatment Monday. I use very little nausea meds (maybe 1 or 2) a week. I feel a little under the weather three days after the treatment but not horrible. Hope it's an easy one for you.
Jean
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Johnsl1, I was allergic to taxol so Abraxine in January. I was 3/1 and had 171mg for 6 weeks and put me on my butt! Bad diarrhea for the first 3 days then sore throat for a few days. Couldn't leave the house! By the weekend I figured I'd live then along came Tuesday
(. Onco then lowered my dose to 137mg and it really hasn't been to bad...drink lots of water then drink more!
My urine burnt my vagina and nurse told me to use plenty of zincofax (yep diaper cream) all over down there.... best thing I ever did...when my personal doc examined me she couldn't believe that the chemo had caused a razer like slice next to my urethia (sorry TMI?)...... my whole stomach area is swollen but I have liver mets. Of course, ALL hair vamoosed, nails are gnarly, joints hurt, eyes really watered and my tears burnt my cheeks but that was on the stronger dose.......on the other hand I have the clearest smoothest skin ever! Lol, Xoxox. Jo0 -
Thanks Jo and Jean,
All I know right now is I'm on 3 weeks on 1 off but I don't know the amount it's a little bag that takes less than an hour to do it's thing; the before and after flushes take longer.
What about mouth sores? When does the hair go?
I haven't told my family yet and I was thinking I might ought to do that before I become hairless.
I'm really hoping to keep working with this, the onc says the 3rd and 4th days are the toughest that puts me over the weekend.
Met some nice folks over there taking treatment. One lady finished up today so it was a happy occasion. She asked me when I would finish, I read somewhere you weren't suppose to talk about prognosis, so I just replied that I didn't know yet.
Another poor soul was in poor shape getting morphine throughout the time I was there but I managed to make her laugh. We decided we needed some medical marijuana and needed to make a run to Colorado. Another gentleman chimed in and said yes Colorado had great "hitjoeandgo" cookies.
I feel so raw-newbie that I'm not sure about infusion room etiquette.
I feel in good spirits right now, not real sure why. Well you all always make me feel like I'm not alone and that there is hope for some more fun. Things may change the longer I go without beer!!
Wishing everyone a good evening - I made it through #1. One moral victory here.
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I loved abraxane a s far as chemos go. worked great until 2 weeks ago. Unfortunatly have some progreesion after 8 months on the abraxane. On to Halaven. Would love to hear from anybody on it now. As usual Im getting a little panicky changing chemos.
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Padiddle - ur welcome....and by the way....I have also taken a baby aspirin EVERY day...even before dx. So that might be a good thing for you to try...and I really don't think it will hurt either.
Just a side note...here I been saying CTH...when it is TCH...LOL...don't let them kid u about chemo-brain. It IS real..LOL!
Jo - funny stuff about da vajayjay. Hadn't thot of that...I suffer from incredible dryness (I'm 58) so I think postmenopausal plus the NO HORMONES is to blame. Think I will check into the diaper cream...LOL, thanks for the advice!
johns - I was never told not to 'talk' about my status while in the chemo-pod. Have had many (over 2 years) great conversations with peeps in the chair next to me. I don't start, but will engage in conversation and LOVE to keep it lively. I grin like an idiot all the time I'm in there...I jes don't kno any better...LOL. BUT...REALLY...I think it is so wonderful that you get others to laugh. I think it is soooo important...u kno...'laughing is better than crying' kinda thing!
OK...seriously...about the mouth sores....best thing EVER...is a salt/water mixture. I kept by my sink and used 4/5x's a day...absolutely made a diff. I think it was 1 tsp salt to 1 cup water. But I kno u can ask or research it to find the correct mixture. Also helped a lot with the dry mouth. I prefer it over the new stuff they sell...like Biotene...nasty stuff. And the salt water sooo much cheaper!
Hair - my 1st TCH was May 23....within 10 days....lost so much hair, that by 2nd week...June 6...my husband and I went and we both shaved our heads. I loved it! And my hairdresser, also a BC survivor...shaved both our heads for nothing. She still gives me 'deep' discounts on my haircuts.
Working - I did work parttime....but remember tx is cumulative...meaning...u may be down only 3 or 4 days after 1st tx but 2nd will b 5/6 days, 3rd, 7/8, etc etc. I thot I was 'superwoman' as I bounced back in 5 to 7 days, and flew w/my kids to ID in July (1/2 way thru)....OMG....I spent 80% of the time in bed in the hotel...made kids bring me food, drink, etc. It was horrible...but then again...NO ONE told me it was cumulative. So....discuss with ur boss and let them kno that it is possible you may seem OK for first couple of treatments...but hey...we jes dont kno. Each of reacts differently to it. OH...and see my early post about 'trying' to walk a little every day to Latte. That too is important during tx. Good Luck and lots of prayers!
Marywh- sorry I can't help with that tx....hoping someone will chime in! Good Luck to you too!
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OOO....my neuropathy in my feet getting so much worse. I will research it...Thank you Glenna!
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checking in down the jersey shore going to the beach after I go to the bathroom.....yay....have a good one, this is my week offf....
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@Jo, Your problem requiring diaper cream is more common than people like to admit. So many of us feel awkward talking about that particular SE. Just know you are not alone!! I do use the SC mentioned in another thread and find it helps me to feel normal!
Glenna0 -
I was not sure if anyone was aware about Cisplatin and Carboplatin. I have done both twice. In this time one of the SE's you may not be aware of is hearing loss. I have lost 40% of my hearing in both ears. Now I am wearing a hearing aide. Which it is so nice to enjoy music again. I have been having problems over time. The first time I did it and got check it was 20% 3 years later now here I am. The hair folicolies on your ear drum are long and sensative to the vibration. So the hair folicolies on me are short and do not get the sensation or vibe it needs to hear. Come to find out these hair follicolies do not grow back. So if you notice your hearing has changed after using these drugs you may want to get them checked out.
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Thank you so much for this posting, you have given me hope for living. I have mets to skull,spine, sacrum pelvis, ribs. I am not in pain. Chemo and I are on good terms. My numbers have dropped for 1500 to 340. Yea!!! I feel good. I am forever greatful to God..
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Normsgirl,
Glad you posted and happy to hear of your great response to chemo! Keep coming back, BCO has been a great source of inspiration to lots of women (and men).0 -
Welcome Normsgirl! I'm glad you posted too.
Johnsl1: How is the Abraxane going for you?
Ebann: Good info!
Memasue: How's the neuropathy going?
I've been wondering how everyone is doing. Been quiet on this thread lately. Everyone okay?
Jean
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Got my first chemo yesterday. I'm on taxol and carboplatin every three weeks. Woke up this morning feeling great and thought maybe there wouldn't be any SEs. Haha! At around 3pm threw up, now have bad constipation, and all my bones hurt.
Anyone know when I will feel better? I did weekly taxol two years ago, but I know three weekly is harder, and I've never done carbo before. I can't change to weekly because its a clinical trial.0 -
Latte: I've never had carbo, but have done Taxol. I didn't have too much trouble with throwing up as long as I kept up on the anti-nausea meds for the first four days. I would wake up in the morning and throw up, so onc suggested when I woke up to stay in bed, take the anti-nausea just sit up for a little bit before getting out of bed. It really did help. Jean
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Thanks jean. The nausea seems to have passed, and the constipation turned into a terrible big D. But otherwise so far not bad...
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I get anti-nausea meds as a pre-treatment before chemo. I have never had nausea problems and have had gemzar, taxotere, adriamycin and now taxol. Now, I can't say that for the big c or the big d but I'd rather be sitting on the toilet than hanging over it!! Latte, if you're not getting it, you might ask for it.
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