October 2011 Chemo group

NancyJill

Great news, wildrumara!

Susanwmcg: I had the opposite, but my oncology nurse said in case of this, Imodium is okay. Notify doctor if 6 or more episodes a day. Glad you are drinking!

WIMusicMaker: I agree that day 4 is awful. 5 wasn't great. Here's hoping that like wildrumara we will feel better by 6!

Normandy18

Hi Everyone:

Getting a bit nervous--I am starting chemo tomorrow. I will be on FEC for the first 3 rounds and Taxol for the last 3 rounds.

I went to check out wigs yesterday and made an appointment to get my haircut short on the 18th. I will also get fitted for my wig on that day.

TAPPY

For those of you on AC+T - what day is your worst as far as side effects ?  (as if they all are not bad in some way just for doing this)

I have a choice of Tues or Thurs to take my AC.

I am trying to plan it so I can work.  

auntienance

Nancyjill, 2 Tbs. Milk of magnesia worked pretty fast (a couple of hours), but certainly does not provide any bulk, so it's a toss up as to how to handle it. Our poor insides!

WIMusicMaker

Day 6 post T/C here and I feel a lot better. The fever and stomach ache are both gone. I hope I am done for this round, but will still hold my breath all day. I was actually hungry when I woke up this morning! 

Normandy I totally understand how you feel, but the actual time you spend in the chair is very uneventful. It will be okay and you will get through this. We will all be here to help you! 

Tappy a friend of mine had your same regimen. She had it on Wednesday afternoon. She left work at noon on Friday and was able to make it back to work every Monday except the last time.

I hope everyone is feeling well today. I hope to be able to enjoy the beautiful weather we are having in SE Wisconsin and watch some baseball and football!

Pippen

Post T/C Thursday - doing okay, my tongue stings, and I feel slightly nauseous, realized I should keep taking my antinausea medicine today without stopping. Was able to eat my normal breakfast, although tasted rather flat. Rinsing my mouth with salt/soda water every so often which helps with the burning sensation.

 My normal sense has been to feel weak, but able to do most things, just not as long, feeling a little off, strange sensations. Feels weird to breathe deep, my lungs feel kind of strange, not sure if it is anything to worry about, so won't. 

I have my sweet purring kitten sitting on my lap going to town to make me feel loved and wanted. Everyone else is busy today, so am home alone watching old movies and trying to stay positive. Tried posting the other day, but my computer disconnected just when I was ready to publish, so sorry for the lack of introduction. I will keep you all in my prayers as we walk through this together. Thanks for sharing your s/e and your experiences here. 

Terry71

Finsished my last round of FEC Sept 16th and am Now just started on 3 rounds of Docitaxil and Herception.. FEC really messes with your tase and its horrid. Everything tastes like cardboard and sandpaper YUCK!!!!!! had a few issues with the last round of the FEC ended up in hospitl being Neutrapenic and had a high fever.... was in for 1 week, counts came back up but now my liver is very ANGRY and I dont know what the numbers mean but my liver enzymes are at 716, Had an ultrasound Friday... Im thinking its from the Chemo, the tylenol for the fever, the Massive doses of meds for possible infection I was on 4 times a day for 7 days, the benedryl for the hives I ended up getting from the meds, and the tylenol yet again for fever!!!!!! Not feeling too bad today mild joint pain in my hips and shoulders though.. Nothing I cant handle YET, or a HOT bath wont help with :-)  this is a GREAT site and so glad My Husband found it    GREAT ladies here and so much Information and confidence, and Tons of support... Thank you all Ladies

Carla9112

Hi everyone - it's so great to hear from so many of you.  I have to say that I started to feel pretty much like myself yesterday - which was Day 8.  I think if they had not had problems finding the right antinausea medicine then I would be have much better a couple of days sooner.  I just hope that this lasts and we get to enjoy the time before the next treatment with no SE's. 

I agree about the taste change.  I'm losing the taste for my beloved Diet Coke.  It seems the only thing that kind of tastes good now is water with lemon.  I guess the bitter lemon gets rid of that slimy taste in my mouth.  Oh well, I always knew I needed to drink water but just hated it. I'll count this as one good thing coming out of cancer. 

Hang in there everyone!

Normandy18

Terry71:Thanks for your experience with FEC--I have read of the side effects, but it helps to hear what people are actually experiencing.

WIMusicMaker: I am not too worried about spending the time at the hospital--it's what happens after I leave:-)

Thank you all!

bourscheid

To prevent mouth sores this is a fantastic mouthwash!  I used it all through my chemo after getting sores the first time.  Healed the ones I had fast and kept any more from starting.  Ordered it from Amazon.com (no one carried it around here).  

 Prevention Oncology Mouth Rinse Mouth Rinse, Oncology, 16 oz

 http://www.amazon.com/gp/product/B002J7HNLQ

sue_from_wi

Dear Oct 2011 chemo sisters,

I'm sorry I have been scarce here. Nausea hit hard Wednesday night and I have been battling it since. The Compazine seemed to make it worse (terrible cramping along with more nausea and I could not keep my eyes open). So I'm off that and just dealing with the now manageable nausea with Sea Bands and very small very bland meals. At least I am able to be awake for hours at a stretch.

I won't go into how hard the last several days have been. The first MO I saw (not the one I ended up with) warned that symptoms could get worse 8-10 days out because (as someone mentioned in an earlier post) of the drop in WBC. I tucked this in the back of my mind, but didn't hear it from anyone else, so I hoped she was wrong. Turns out she wasn't.

One thing that has made me angry/sad is how several of my 'alpha female' friends have pretty much denied that this is all a result of chemo: 1) there must be something else going on, 2) most people get over it in two or three days and 3) you really have to get in and be seen. I have really regretted having any sort of interaction with them. I know they mean well but what I wish I had had the strength to say is 1) I didn't know you were an expert on chemo 2) I've very happy for them but that's not been my experience and 3) don't you think I know that and don't you know I am doing EVERYTHING I can to feel better?

I am a strong introvert and I know this is not true for everyone but what I find most helpful now is a gentle hug, reassurance of prayer and talking about something else. 

Take care all.

sherrybaby

Sorry I haven't posted in a while either as I have been trying to feel better after my first A/C treatment on Friday.

stjude a MUGA scan is a Multiple - Gated Acquisition scan. It measures your 'ejection fraction'. All that to say that it makes sure your heart is strong enough to pump out the Adriamycin. I believe an echo will show the same thing, but doesn't give as accurate a picture. Since we had to jump through hoops with my insurance company to get this one done, I will probably have echo's from here on to recheck my heart.

Carla9112 thank you for your update regarding the nausea. The only time I don't feel sick is when I am sleeping. I have been taking the Zofran religiously during the day and the Phenergan at night. I will ask my MO on Thursday about adding the Ativan and hope that it works for me like it has for you.

Has anyone else had this SE while getting Cytoxan: The bag was about 2/3 done when all of a sudden my head started hurting, my sinuses felt like they were on fire, and my eyes felt like they were going to come out of my head from the pressure? My RN increased the amount of saline coming in and that helped, but it was horrible! I suffer from migraines anyway and have pretty much kept a low level headache since Friday.

I hope that everyone has a great week, no matter what we are going through.  

Sherry

susanwmcg

Nancyjill thanks re: Immodium. I was ready to take it when it stopped this morning. I have never had mono but my girls have and it must feel like this. I get out of bed for 5 minutes and it feels like I have sprinted five miles. Can't wait for this SE to go away.



Sherry - I had TC on Thursday but before my nurse started the Cytoxan she asked me if I was prone to sinus problems. I told her YES. She said Cytoxan can give you wicked sinus problems if not given very, very slowly. She said as soon as I felt pressure to tell her. About one-third of the way I did. She slowed it down even more. I think it took 2.5 hours and usually takes 1. I was not in any hurry if it meant I wouldn't have the sinus issues. I have been able to use extra strength Tylenol for the remaining headache. I sure hope you feel better soon!



Hope everyone has a good week.

Susan

TAPPY

What are you all taking for nausea ?

I have a script for Zofran and Phenagren (I assume this is for nighttime use as it makes me sleepy).

Do you all find these meds work or are the better combo's ?

Carla9112

Hi Tappy, Sherry and Sue - I went through Zofran, Compozine, Phenagren and Kytril to try to ease the nausea.  I was literally sick from the day I took treatment until Friday when I finally broke down and took the Ativan at the recommendation of my oncologist.  He had given it to me on Monday but when I went to pick it up at the pharmacist she scared me to death.  She said to go to bed, don't drive, don't get on the phone, etc. etc.  Well, I just didn't take it. 

Then the oncologist told me to just try it over the weekend.  Sure enough - as soon as the first one kicked in the nausea went away.  I haven't been knocked out and feel perfectly normal.  It makes me mad that I suffered for a week over what the pharmacist said but I guess it does impact some people in this way.  I was at the point where I didn't care if it knocked me out - if it would just relieve the nausea.  Thank God it did with no side effects - no sleepiness, headaches, etc.

 I would definitely talk to your doctor about it.  It is really an anxiety drug but they have found it works for nausea.

 Hope everyone feels better real soon!

stjude10

thanks for the info. Sherry, I know mine was an echo. never offered the other. hope that works ok

welcome to the new gals, I haven't been on here for a short bit, and my how we've grown.

susanwmcg=thanks for the tips. I too will be having cytoxan for my first 4 rounds and every hint helps

sue_from_wi and Carla, I'm so sorry to hear of your se. I sure hope you're both feeling better.

I just want to say that I really appreciate all of  you with your wisdom, humor, strength, and insight. It makes my journey so much easier

auntienance

Day 7 and would have been the best day yet, except for the cursed stomach cramps and GI issues.  Finally broke down and took 1/2 dose immodium.  I didn't want to because I'm really trying to get my system functioning on it's own.  Also had some very intense lower back pain today (from the Neulasta I think?)  The nurse had warned me about this but I can't remember if she said that the Neulasta causes it or the tx itself.  This is the first back pain I've had, and have taken Claritin all along for allergies, but I did not take naproxen at all yesterday, which perhaps I should have done.  At any rate, naproxen took care of it, but it took 2 every 4 hours to do so.  So I'll be adding tylenol to my home pharmacy for the next round so as not to max out on the dosages.  Live and learn!

Pippen

I went out to Target today to get some exercise and walk around a bit, also to get some hard candy to suck on for when my mouth is tired of water. When we finished up at Target and walked across the parking lot, thought I would get a bowl of soup at Panera bread, which sounded really good. Well I didn't get to eat it. I sat down to wait for the food to come, and proceeded to pass out! That was a surprise. I guess maybe I over did it? I don't know, there was no warning. Anyway my husand got my food and went and got the car and drove it right up to the door and when I was ready to stand up and walk, I got in the car and went home... so much for going out to eat soup! :-) I'm home fine, just tired and feeling shaky.

sue_from_wi

Pippen - I hope you are feeling better and stronger today. Did you get to eat your soup at home?

Carla - I'm going to ask about Ativan. Thanks for the suggestion. I am also using a homeopathic nausea treament (antimonium crudum) which seems helpful.

Lori - ditto what you said. Even on the days when I'm not up to posting, I get a lot of support just from reading what the rest of you are writing.

How is everyone's hair doing? Mine is definitely starting to trickle out. I wasn't expecting to have this happen until after the second Tx - I suppose the rate will really pick up then.

Terry71

Ladies I am On Neulasta also and just had my 4th  injection on Saturday it almost always kicks my butt and causes intense joint pain in my hips, shoulders, knees and ankles..... Its NO fun, a HOT bath helps WATCH with the tylenol  it causes your liver enzymes to elevate and that causes pain also.....I know his cause Im having this issue now with elevated liver enzymes at 716, Have no clue what the number means but its elevated.. I am now in the home stretch with 2 Docitaxil to go next one is in 3 weeks... Dont think I could handle anymore than that thats for sure. My MO did tell me though that with this I would feel like I was hit by a bus for about a week and he was NOT kidding!!!!!! My hair is GONE and has been gone since round 2 of the FEC, shaved it all off and it felt great.... It broke my hear to lose it as I had hair down past my Butt and got 24 inches cut off.... but its only hair and it will grow back... Keep smiling ladies.......

LuvRVing

Ladies - I have an important suggestion:  please, please request copies of all your labwork.  That way, you can see what is happening with your counts and your enzymes and compare them from treatment to treatment.  Keep those from now on!  As a diabetic, I was already in the habit of collecting them, so that I could track important numbers.  As a matter of fact, you should get copies of every test, every film, every surgical report, because if you go to a different doctor (or you do like I did and move halfway across the country in the middle of all this), this medical history will become invaluable.

It's easy to look up results from labwork and learn to understand what the numbers mean.  Just another part of getting your PhD in Breast Cancer Studies

Michelle

susmita

Hi,

I am new and starting chemo on Oct 20 (T/C 4 cycles). I would like to hear from people who did not take neulasta for increasing WBC. Could you please tell me how you did without it and whether you needed to get more blood work? I am more afraid of Neulasta than chemo.

Thanks for you help. 

WIMusicMaker

My husband and I got to have a little adventure in the ER last night. My fever shot up to 100.8 so my onc told me to get in. I was given fluids and antibiotics and did feel much better. I am really tired today from being out until 3 AM. Why does that kind of stuff always happen at night?

One mistake I made and I don't want any of you to make it too, I stopped taking my claritin day 6. Boy did I pay for that! So along with my fever, I had severe hip bone pain too.

auntienance

susmita - even though I had some back pain yesterday, it wasn't unmanageable.  I know other people have had different experiences, but for me, I wouldn't avoid the shot and it's benefits because of that.  And today, I have no pain at all.  Good luck with your first treatment!

auntienance

Terry71 -- I hate tylenol too because of what it can do to you.  It would never be my first pain reliever of choice, but I rely heavily on naproxen because of arthritis and don't want to overdo that either.  ACK!  No good choices!

sue_from_wi

WIMusicMaker - sounds like an ordeal! I almost went to the ER on Sat night - spiked a fever of 101.5. Took a Tylenol and called our insurance company's nurse line. By the time I got on line with the excellent nurse there, my temp had already dropped to 100.5. She asked a bunch of questions to rule out the more serious possibilities so I felt more comfortable taking a wait and see approach. Fever climbed pretty high Sunday morning but has been under control since then.

I DID find out that there is no good way to get ahold of my MO on the weekend or after hours. Did your center give you an after hours contact number to call?

cfdr

I had my first tx of TC on Friday. Was lucky not to have any reaction on site. They did warn me about the possibly sinus effects, said if I started stuffing up they'd just slow it down. But it all went smoothly. My husband got to see the baseball game on the TV and I beat him in Scrabble, too. :-)

Saturday and most of Sunday were fine...even had friends over Sunday afternoon. Some intestinal cramping but no nausea; did have one small bout of diarrhea today but so far that's been the worst. My docs gave me zofran and dexamethasone to take for two days after; I've also been taking 1/2 an ativan before bed, mostly to knock me out and because I've found it's been helping to prevent morning migraines. I did have a migraine morning after the tx; knocked it out with 50mg of sumatriptan. I have a scrip for compazine but have not had to take it yet.

My onc is one who doesn't do the neulasta first time out...so I'll see how that goes. Planning on avoiding all public places Thursday through Sunday. Nonetheless I felt very achy today after only 20 minutes on the treadmill. Also having a fair amount of pain where I had surgery and radiation (I had my rads before chemo).

They had a pharmacist meet with me prior to treatment, which was really helpful. It was great to talk to someone who was not only familiar with all the cancer drugs, but was informed about how they might interact with my asthma and migraine drugs. The oncs sometimes seem to forget that patients may have other conditions going on other than cancer. One thing he said was that if I take any kind of pain killer (ibuprofen, naproxen, aspirin, tylenol) to make sure that I don't take doses back to back, but have time in between to take my temperature. He said there's a danger in taking pain killers that can also mask a fever and make it more difficult to detect an infection.

Sue, I feel for you with your alpha female friends. Whenever I read one of those "inspirational" stories of a woman who went through BC treatment without ever missing a day of work I just want to scream! It's been emphasized to me that every cancer, every treatment, and every patient is very unique. I also feel that I'm undermining my treatment if I try to do anything right now other than allow the chemo to work, and stay as healthy as possible to prevent side effects. The rest can wait!

mjhardy

Hi everyone - I just had my first treatment on 9/28 so I'm technically October.  My first one was OK - I felt fine the first 3 days and then day 4 and 5 (esp.) were kind of rough.  I am working full time through this and have two young boys (6 &3) and I'm trying to keep up my normal exercise routine (6 days a week).  We'll see, but round 1 I did OK - exercised most days (even ran!) and got a lot of work done and quality time with my kids.  I have been very tired and so today I started juicing - drank a green drink and could not believe the energy it gave me.  I always think that's a hoax when I read that stuff online, but honestly I felt it right after drinking it.  I'll have to start the day that way I guess.  I have not lost my hair yet, but from reading here a lot I expect it to happen in about 5-6 days.  I have 2 wigs, both of which I hate.  I paid a lot for them but they still look so phony to me. I bought a few scarves and a hat and I'm sure I'll buy more.  I am very visible at my company and the thought of walking into work that first day with a wig on scares the you know what out of me.  Round 2 is in 2 days...I'm doing 4 cycles of A/C every other week, 4 cycles of Taxol every other week, then radiation, then tamoxifen for 5 years.  "nice" to be part of the group.

LoriKristine

Hi Everyone! I hate that we are all going through this but glad that I can come here and realize I am not alone. Day 6 and I am feeling normal today- finally back to a regular diet and have normal energy.



Carla9112- I hear you about not wanting to go back! I go every 2 weeks and am dreading the next round. I'm also very fearful because I will be returning to work on the 22nd which is 4 days after my next treatment.



I know I'm looking too far ahead since I have 3 more doses of A/C, but those of you on Taxol- is it just as bad as the A/C? I'm scheduled for 12 doses of Taxol weekly. Just wondering how I'm going to juggle work and nausea at the same time if its just as bad.



Thanks again everyone for posting- this really helps.

mjhardy

I had the Neulasta shot with my first round of chemo and I felt absolutely no side effects from it (that I'm aware of) - I did start to feel bad a few days later, but  I chalked it up to the chemo since it was more in line with the side effects listed for that.  I didn't have one body ache or bone pain at al.  The shot hurt though!