April/May 2012 Chemo hang out

Rose_d

Hi all,



I'm so sorry to hear about all of the hospitalizations! I hope you all get out quickly and back to sleeping in your own beds!



I had my 4th and final A/C on Tuesday. Threw up for the first time that night but (knock on wood) this one seems like it might be better than the last one. I'm definitely more tired but managed to get out for a long walk and the overall neausea seems better this time around.



I've noticed that some of my stomach problems seem to be coming from my head. Just thinking about tap water could make me throw up, and going back to the chemo room yesterday for my Neulasta shot made me feel much worse. The nurse said it definitely happens, she used to have a patient who would start vomiting once he hit the highway exit for the cancer center. I'm from here on out going to take an Ativan the day of treatment and won't watch the infusion at all. I think it helped yesterday.



The combo of Ambien CR and then 2 Ativan when I wake again in the middle of the night seems to be the working combo for me during this week so i am going to stick with it.



To the person who asked about the 'crash' for me it's coming off the steroids. The first two treatments for me it meant lots of tears on day 5 which is completely unlike me. I didn't have the tears during 3 but was exhausted that day and took a long afternoon nap which is also like me. I'm a bit worried about this weeks' crash since day 5 is Saturday given the Holiday Monday and my 3 little kids have a million activities that day. Should be interesting!



Good luck to everyone starting soon. We will make it through this, right?



Rose

Melrosemelrose

sgtgee_69- Thanks and same to you.  We, Mamas have to be proud of our children and their accomplishments, especially since this past year has been a big one for our children who are seniors in high school.  Hope you feel good enough to be at graduation!!!!  My scalp was a little sore before the hair started its exit.  Having water on my head from the shower seem to make it feel better.  At this point, my hair loss has stabilized and I still have some hair left, especially around my hair line.  I kind of like this minimalist hair look I have now since I did have waist length hair for years!!!!  Hope you feel better soon and that you get the side effects under control!!!!

lisa2012

So thrush ladies, you just put up with it, do Nystatin? I'm worried becuase it got rid of of it first round , this time it sort of isn't. No pink tongue yet after another 5 days of rinses. No sores, I can eat, but I worry since having it at the beginning of a round is new and I worry that it WILL get worse. I'd love to avoid mouth sores. I may bite the bullet and take diflucan to get a break, several friends have taken it with no SEs. And hey, I'm on Zofran for a few days post-chemo and that might protect me from any nausea. sigh. So boring and annoying..

Very slow day after chemo yesterday. going for Neulasta shot this afternoon.

sandik

No mouth sores, but my tongue is whitish. Can't taste too much. THat part sucks. Doing the salt/soda rinse. I guess I should do it a few more times a day, see if that helps. 

Rose, been thinking the same thing about the nausea being in your head. I was brushing my tongue this morning and gagged a little. Since then, all day I have been thinking that I smell a certain smell, like medicine, and every time I think I smell it, I want to throw up. Of course, I don't smell it. It's all in my head. But, it's messin with me bad. haha 

dancetrancer

Indigo - yay on the good bloodwork and being able to go forward with today's tx!  One step closer to being DONE!  

lisa2012 - I had mine for 2 weeks - and it is just today (after multiple Neupogens and my whites finally being pretty high) that my body and Nystatin are kicking it.  It's about 90% gone.  I never had sores on my tongue related to it - my tongue did get sensitive in certain spots, but never really painful or bleeding or open areas.  It was just white on my tongue, looked gross, didn't affect me at all functionally.  It CAN progress and get painful and bleed, from what I understand - but mine never did.  I just kept doing Nystatin rinses 4x a day.  I'm assuming that kept it from worsening.  I know it is related to the immune system.  We skipped 2 Neup's Sat/Sun b/c doc was concerned I'd go too high w/o bloodwork monitoring - and my thrush got worse on Sun/Mon...not a coincidence, if you ask me!   

mistym

Hi all,

Extra hugs being sent out to you who are not feeling so well today.

I had my first Neupogen shot today.  I am still very nauseaus from treatment and have only been able to eat some crackers and toast so I can take the anti-nausea meds which are not working.  I know I will feel better soon but I didn't expect to feel bad yet.  For some reason I thought that the first week would be a good week and the second week bad and the third week good.  However, it is what it is and I know I will feel better soon.  I definitely have a cold and will be sure to monitor my temp.

No matter how crappy I feel, I still make sure I get out three or four times a day to take my dog for his walk. 

Thank you all for being here,

Hugs

Fierro6

Day three of work, and since I got permission from the "big boss" (the owner) to set my own schedule, I got up at 4:30 and was there and working by 6:30.  I just do SO much better in the morning.  I "hit the wall" around 2 or so and can MAYBE push until 3.  Since I have an hour commute, though, I usually don't.  I was so happy to get those 8 hours, but now I cannot move from this chair.  Thank the good Lord above that my mom is making dinner for my family tonight.

The reason for the check-in is to follow up on the fluid build-up after drain removal, in case someone wonders.  Last night, we put a big wad of gauze under a bandage (even though I thought it overkill) and there was nothing on it this morning.  I did the same huge bandage this morning, in case anything changed at work.  I really didn't want a soaked shirt at work!  Got home, nothing on it.  I guess it's done leaking.

And the tightness?  It's back.  I bet a pretty penny I get sent to have fluid drained off tomorrow.  The PS office (where I'm going for a TE fill tomorrow) cannot do it, because they do not have an ultra sound to make sure they miss the TE.  So I'll get my first fill, be sent to general surgeon's office for needle aspiration, and schedule treatment number one...all tomorrow afternoon.  Emotional?  Probably.

And just in case anyone wonders what it feels like to have fluid buildup after drain removal, if you've had a child, it feels a lot like when your milk "comes in."  It doesn't hurt, but it's tight, I can see that it's swollen, etc.  I had a friend tell me to put a cabbage leaf in my bra, because that worked with her milk when she had a baby.  I told her that it wasn't milk, it was fluid, and she said it's supposed to work for THAT too!  Now I wish I had a head of cabbage in the house! 

dancetrancer

mistym - so sorry you are having nausea.  There are different anti-nausea meds, so if the one your are taking isn't working, call your doc's service.  They can try calling something else in for you.  Most of the time nausea can be controlled - you just have to find the right med.  And, if you didn't get Emend in your premed IV, maybe ask the doc about that next time.  I get it plus Aloxi and the combo keeps me nausea-free.

 fierro- UGH on the tightness and your busy, busy day to come tomorrow.  That is so strange about the cabbage leaf thing....weird!  

 All - got stranded at the doc's office today...car was ticking loud...yep, I let it run out of oil...OMG.  DH had to come get me, put oil in it, and follow me to the mechanic.  Mechanic just called and said it's time to get some flowers for the car's grave.  OY!!!!  He is going to try one cheap fix (flushing the car with new special oil), but it's not likely that will repair the damage.  We knew we needed to get a new car soon, but UGHH...not something I want to be researching in the middle of chemo!  Oh well.  Sh*t happens.  It's just a car.  

Stacie

Sgtgee

mistym

Hi Dancetrancer,

I actually did have Emend as well as two other anti-nausea meds in the IV.  I am taking four different pills for the nausea right from when the treatment started on Tuesday morning.  The nurse was surprised that they aren't working.  If I am still this bad tomorrow, I will call the doctor. 

Thanks for being here,

Misty

dancetrancer

Oh misty that is awful!  You sound like me with the heartburn.  Trying everything with minimal to no relief.  I am so sorry!!!  My last suggestion - antinausea wrist bands - minimal chance they'd help, but may be worth it if nothing else is helping.  Hugs to you, hate to see someone else suffer. 

mistym

Dancetrancer I am definitely going to go out and get the wristband this evening or first thing in the morning! I am desparate.

Thank you

Marcia1111

Rose_d

My BS recommended lumpectomy and radiation.  I opted for BMX for various reasons, thinking I would not need radaition.  Unfortunately, 2 lymph nodes were involved, so not only do I have to have radiation, but chemo as well.  I will begin chemo next week.  What a lousy surprise.  I totally get where you're coming from.

dancetrancer

I understand that desperate feeling mistym!  Sending healing thoughts and energy your way! 

dancetrancer

Yeah, I thought I'd get out of rads, tamox, and chemo via BMX as well.  Sucky surprises happen way too often when it comes to cancer.  Can't wait for us all to be PFC!!!! 

vballmom

Misty, I have been nauseous for 10 days.  Today was much better and I had one more good day on Tuesday, but it's been rough on my tummy.   I can't stand anything to drink. I even had to ask my daughter to take a glass of vitamin water off the table because it was turning my stomach.  None of the meds really helped.  For me, it seems to be all about managing it. Keep something in your stomach.  Have small easy things to grab. My hubby cut up a watermelon and put it in the fridge. I would go zombie like in the middle of the night and take a cube or two. It quenched my thirst and put something in there.  I did okay with broth if someone handed me a cup.  I also did okay with tea.  Soda, flavored waters, juice do not work but surprisingly seltzer is okay and I don't even like seltzer.  I am not a big salt person and I have been craving salt, too.  The best meal I had was some noodles with broth and I grated cheese on it.  I had trouble swallowing anything dry, like toast.  Hope that helps!

sandik

vball, 

   That really sucks. I seem to do better with ice in my drinks. dont know why.  

Krazycatlady37

Just wanted to update everyone from my hospital bed...they found e coli in my urine culture. So likely a bladder infection! I had no other symptoms except fever.

Hope everyone hs a great evening!

Melrosemelrose

mistym- Sorry the nausea has hit and hasn't let up.  You probably need something in your tummy besides crackers to help with the nausea.  Maybe some rice or mashed potatoes-- plain and bland.  Ginger helps with nausea so you may want to drink some ginger ale, or eat some ginger chews--- you can probably get those at the drug store while you are there getting  those anti-nausea wristbands.

vballmom- Sorry to hear you are still having a rough time.  Maybe some popsicles or jello may appeal to you?  I usually drink ginger ale-- really cold and lots of ice for the days I feel off after treatment and also eat really bland-- mac n cheese, mashed potatoes, baked chicken that come from a cafeteria near my house.  I don't feel like cooking on those days and don't want the smell of cooking food around me.  Hope you feel better very very soon--- you need a break!!!!

dancetrancer

Ladies...with taste issues/upset tummies/just hungry...y'all - someone just made this for me:

Magic Mineral Broth

WOW.  It is sooooo soothing to eat, and soooo tasty for just being a broth.  Of course you could use it as a base to add other stuff in, but I am enjoying this straight up like you wouldn't believe.

I hope you all have someone you could ask to make it for you, or can make it yourself if you feel up to it!  

mistym

Hi Melrose,

I will try the rice or perhaps noodles tomorrow.  I have been trying gingerale as well as ginger tea.  I will pick up some ginger chews.  All of the suggestions from everyone are great and I thank you all.

Hugs to all,

Misty

kjiberty

verballmom:  Feel better soon!  

dancetrancer:  The chest pain might be acid reflux or heartburn. I got up this a.m. and tried to drink something and it felt like there was a big bubble in my chest.  I ate some tums, and took some omeprazole and haven't had any problems since.  The numbness in my hands comes and goes.  It's weird.  One day it's the left hand and one day it's the right hand.  Today--I am lucky--nothing.  

The hives are getting a little bit better.  Still appearing, but trying to stay off steriods until next Wednesday-the day before before the chemo.  

Sandi:  GREAT interview.  I admire you for being able to go back to work, and do something you love so soon after chemo. My TV interview was shown the day before the Race for the Cure this month.  If you google Komen Karen Johnson Peoria IL you will see my interview.  You need to click on the Komen icon to the right to see the actual interview.  My cute dogs are in the picture.  It was the day before I had my hair shaved and my hair was starting to fall out in droves.   

Marcia:  I didn't think I would need chemo either.  My RO told me I probably wouldn't need chemo.  Then the oncotype test came back.

nofear2012

Lisa2012-I had thrush w sores my first to treatment & used the nystain swish/swallow but it came back. This last time I used the salt rinse about 20lbs times a day & I didn't get sores just the white tongue. The nurses called in the diflucan & said that even tho I didn't have sores to take it becuz they wanted my immune systm to be good for my next treatment. It seems like dancertrancer is able to keep her thrush controlled & her onc dr was ok w that w/o the diflucon. There is also biotene that u can get too, but I don't know if u need a script for that. Bottom line tx to yur onc dr.



For the ladies w nausea I too had major struggles ne4, during & after treatment, it never went away. What I found that really worked for me is alternating betwn compazine & Ativan after treatment. I never had to use the zofram. This treatment has been better on my stomach not as much nausea, but I still have no appetite. They also gave me Ativan in my iv during infusion. Sorry u have to go thru this it totally sucks as we all know.



Thanks rosed I guess we all crash differently, I had a lot of tears/being down today too. I am hoping for a better day tomorrow.

dancetrancer

vball - uggghhhh!!!!  I hope that nausea gets under better control for you, too, SOON!  It is just not fair that you guys have these symptoms go on and on.  I know how exhausting it is - HUGS!

krazycat - thank you for the update!  I hope that you are starting to feel better very soon.    I've been told that 's why neutropenic infection is so sneaky. Often no symptoms except fever, because your white cells usually are there causing the signs of inflammation/pain etc and you can tell where the infection is.  Without the whites, the only sign is fever.  

IndigoMont11

nofear, I hate the crash day, but I can't complain really because so far I haven't been sick.  Just laid out to where I feel too exhausted to do anything, and depressed.  I had thought the depression was part of the crash, and it probably is - but now I think it's also due to chemopause.  We know we can do this and we are doing it - just that sometimes thinking what we go through is still overwhelming.  

Fierro, fwiw, on my right (non-cancer) side, at the bottom of where my breast used to be, it's been more puffy since my surgery.  I only had one drain on that side and they took all my drains out after not quite 2 full weeks because the output was so low (less than 10 ccs in 24 hours).  I didn't leak onto the dressings at all afterward so I hadn't thought it was really too early to get the drains out.  They also told me that if I had fluid buildup and it caused any problems, to call and the BS would do a needle aspiration.  Well, in my case, since I had no infection, and no TEs, and I haven't had any pain with it (not even really the tightness you described), I decided it wasn't worth a special trip just for the needle aspiration.  The BS's nurse said that if I did nothing, my body would eventually reabsorb the fluid. 

Interestingly, though, it seems a little bit smaller but is still there, and it's been over 2 months since the surgery.   I have been thinking I should ask the BS if he really took all of the breast tissue out, because it is noticeably different than the other side, and not in a place that I would expect to look different because of the ALND.  I figured when they told me I would "eventually" reabsorb the fluid that it would be before this time.  But when I saw the NP in oncology this a.m., she checked it and said yes, it's fluid, nothing remarkable and that I would still eventually reabsorb it.  She didn't seem surprised at all by the time already passed.

I understand they have to handle yours a little differently because of your TE; I'll cross my fingers if they do decide you need the needle aspiration, that it goes smoothly for you.  They told me most people don't find it particularly painful.  

Do you work for a city government?  For years, my mom was the motor vehicle license office clerk in the little town where I grew up.  She loved it, although she too was a one-woman show with no one else really who knew the job.  Out here, state and some city employees have been subject to furloughs due to budget cuts.  I have been furloughed in the past when the federal government (I work for a federal agency) shut down at the time that Congress ran out of money and couldn't agree on a new budget, but luckily nothing routine.  

kjiberty - going right now to check out your Race for the Cure video!!  Thanks for sharing! Hoping you get rid of the hives!!  

krazycatlady, mistym, and vballmom - sending a high burst of purple energy.  And some hugs!  

sgt_gee69, thinking of you standing and watching your daughter graduate.  And looking gorgeous for her prom!! I am tearing up just thinking about it.  

vickilind61

Had my chemo education class today.  My daughter came with me and took notes and I walked out with books and note books and plannners, oh my.  Then, she took me out to lunch; she paid and everything!  Then, I hurt my arm (where the nodes were taken) reaching behind my seat in the car for my purse and it is so painful right now.  But, on the whole, I am ready to start my chemo.

Hoping krazycat, misty and vball get to feeling better and can enjoy the weekend.

velutha

Wow, too many posts to read. I'm trying

Thanks for the good wishes for my exchange. It went great. I made sure they loaded me with lots of pain meds for the car trip home and brought pillows for the car. Compared to bmx and chemo, this has been a piece of cake. The pain is like a bad bruise along the incisions. Hard to get in and out of bed/armchairs, but not horrible. And it is wild to be rid of those rock hard TEs. The gummy bear feel is almost like the real thing. And they are "growing". That is, they look bigger today than they did yesterday. So weird. Anyhow, had surgery tues, I could probably be working a desk job now, if I had to be on my feet, would want to be home till Mon.



I am now a month out from last taxol, and have hair all over my head. Still look bald, but a lot of hair, longer than a cm, all over. I have dark hair, so it looks kind of 5 o clock shadow.

Fierro6

Indigo, my body should absorb it, too, but it's so much.  I think that's why they're planning on the aspiration.  I have nearly NO feeling on that side, so I'm not worried about it in the least, other than hoping once is all we have to do.  It's bigger tonight than it was this morning.  I told DH that if I left it alone long enough, I wouldn't need the TE or implant.  LOL

I'm fascinated by how long it's been and you still haven't reabsorbed everything.  I assumed it would be within a few days, or a week at most.  2 months?  Wow.  I'm not in any pain, and I made sure my PS nurse knew that when I emailed her today.  I can tell it's got fluid in there, but it's full feeling, not painful.  I wanted her prepared, but didn't want her to worry that it was an emergency in my eyes (boobs?)

I should have called the MO today to reschedule chemo, (because the drian is now gone) and I didn't.  I will tomorrow, and I felt like I was being rebellious by delaying things by one day.  Yes, I know that this potentially delays my healing by a day and the end of treatment by a day etc, etc, but it felt good to take charge in this tiny way. How childish, huh?

Yeah, yeah.  I'll call tomorrow.    

kjiberty

Vicki--Just remember...you will get through it!

Velutha:  Glad to hear your hair is growing back...Mine is still falling out!  LOL 

dancetrancer

Fierro - I don't blame you one bit!