For those starting chemo in June

NancyNY

Oh, PJB I do intend to take meds. I was told to take 4 decadron the night before. Don't know what they will give me the day of or the day after. Also, are you ladies on Taxol using glutamine powder at all? I am going to try to see if it prevents nueropathy. My onc said studies have shown it to work only after nueropathy started. I figure, why wait?
Hope everyone is feeling good.

janie44

OOPS! I just re-read the Clinical Trial outline. I thought I would be getting Taxol every 3rd week just like AC, but it says weekly! Since I live 2.5 hours away from Mayo and trying to work full-time, this is going to get interesting.

Is the ice you all are talking about for the blisters in the mouth? I have them this time after the 4th treatment along with the sore throat. One blister is on the tip of my tongue. Ouch!

What care package should I get ready? Glutomine? What else?

Mary, I am also HER2. I am receptor negative. Stage 3. Which other Junie's are HER2?

Hugs and fuzzies,

Janie

mary1220

hi girls,well Decided to practice making eyebrows today and of course started out looking like BOZO the Clown so wiped the eye pincil off to start again and half my darn eyebrow came off too! so after about an hour I got them on and not toooo bad. I will never master this I can't write my name so you can read it.I have gaps in my lashes but I didn't even go there. thats another day! PJB my sister hasn't had her mam yet still waiting. I prey she goes up to a breast cancer Dr. and not the local yea-hoos. I will no doubt have to beg her. Her idea is if you don't know it wont hurt you.Thanks for your concern. I am the oldest and my mom died of pancreatic cancer so I have to be mom to my 4 sibblings.Everyone says they take pre meds for the Taxol but I get pre meds at infusion but I don't have anything I take at home except my mouth rinse for my poor tongue. I have heard if the A/C is bad you do well on the Tax. and vise-versa. I must admit I had it bad with the A/C but the Taxol is going so much better. Maybe getting it weekly is easier I don't know. I think I hurt more with the first two.I get the muscle and joint pain but nothing like when I got the nup. shots.I don't have to get shots for blood counts anymore. I was pretty fatigued with the first one but not as bad now.I was really sick with the last A/C. I think I am finally feeling better from that crap. I seem to be making more saliva in the last couple days before next dose. It feels like I am full of it.My poor nose runs all the time.I have noticed abdominal cramps off and on and a lot of gas.I tell ya I am like an old man just tooting around where ever I go.Wish I could hold a thought long enough to wait until I get out of ear shot but I don't seem to care and it seems to have a mind of its own and just happens.Its a darn good thing I can laugh at myself.Have a good Sunday everyone and take care of yourself and that little boy PJB, I don't know how you guys do with kids. Hugs, Mary

PJB

Mary, you made me laugh. I've got the whole gas thing, too. Of course, my son thinks it's kind of funny since it's NOT something I was brought up to do without being really embarrassed. It's amazing how standards changed...

I've been going out more without the wig, with just a baseball cap. Even to places I'm likely to run into people I know. It's just too hot here in Texas. I keep crossing my fingers I'll keep what hair I have, but I guess at this point, I really don't care all that much. Just another month and this chemo will be behind me.

I think I might pick up some of the glutamine to start this time around, too. I'm not sure how much you're supposed to take, but I guess I'll hunt around the boards and I'm sure someone has some info on it. Nails starting to look a little funky, but again, I'm just going with the flow. They make lots of cool looking bandaids these days...

You guys all have a wonderful Sunday...

mary1220

janie, You will need a driver for the Taxol because you will go to sleep and sleep several hours after the Tax.because you will get lots of benadryl the first time. They sometimes will cut it down after the first time if you don't have any reactions. PJB, I wear my ball caps all the time. I wear a do-rag under. I made some bandanas and tie them at the back of my head/neck and put my cap over it to keep the baldness hid a little better.I have wore my wig maybe twice. Its just hot and sticky, I have this great Illinois humidity so I wear my do- rag and ball caps and I have rags and caps in many colors.well I have #4 tomorrow and then 4 more to go.Hugs, Mary

mary1220

Well I am awake but loopy. I keep walking like a drunk. Must be all the alcohol in the Tax. plus the benadryl. I slept through lunch and sup. but not real hungry yet. The sreroids will kick in later and I wont be able to sleep all night and I am working tomorrow I hope.Guess I will do the 12 Taxols. Onc seems to think its good. They don't have data on 8 treatments and they have good data for 12 so I guess I will. I would very much like to say some not so nice words right now.%#*##%&. I was so looking foward to 4 more but so far they aren't too bad so I will go with the flow.I may be very glad years down the road.Gosh, everyone must be on their last A/C and feeling pretty poorly.You will get so much better in a couple weeks.I have one eyebrow on and one off. It looks so me, maybe I will keep it that way just to see peoples expressions. It makes me look at myself and stare thinking MAN, that Sucks! People probably wonder what swamp I crawled out of.I pull my ball cap down to where you can't see my brows if you look at me. I didn't even try to do brows today. My lashes look pretty moulty too.Looks like I have the mange.Its still better than the A/C. Hang in there Hugs, Mary

PJB

Nancee, JoanneJ, how were those first Taxols? And how are the rest of you guys doing with side effects? Mary1220, sounds like you're having quite the time. That weekly has got to be tough. I have a hard enough time getting myself psyched up every two weeks.

You know what I wish I'd done before I started Taxol? Bought and broken in some really comfortable, supportive shoes. This stuff kills my joints and feet. Not quite as bad this time, but I'm still limping around five days after treatment and have developed a little more tingly feeling in my fingers this time. I think I might start taking B6. I suppose I have to call my onc nurse first.

I tell you, I appreciate so much being in touch with you guys during all this. It makes it more bearable to know I'm not the only one dealing with this cr#p. Somewhere out there, you guys are also cursing this Taxol.

mary1220

PJB, everyone must be recoupping from that last deadly A/C. I will tell ya the most comfortable shoes I have ever bought and I only buy them for everyday wear is Nike air tennies. I just can't wear anything else and you don't have to break them in. I get Clarks for every other use and they are really comffy too but I wear my nikes with just about anything when I am going to be on my feet a lot. My feet don't get burnie or itchy or tired in them especially when I mountain climb in Az. They are great when your on concrete your feet don't hurt at all. You may have already tried them but I am on my feet a lot at work and I have to wear white shoes (nursing) and they are great.I worked today for 6 hours. I am salary but I feel bad not working. I am stirr crazy when I don't work.My boss was sooo glad to see me back. Its wonderful to be needed.I saw something in my chart Tue. that said don't let pt. see. Well I am going to open the door when they put my chart in the bin and grab my chart and see what the heck it says. I would ask but I doubt I would be told the truth.My onc. is gone so I have to see another one.I will find out.well good luck PJB your almost there. I sure hope they get easier for you.I hate to hear your in so much pain and have a little one to tend to.That has to be hard.My heart goes out to you and your brave soul.Hugs Mary

janie44

Dexter fisherman sandals are also very comfortable. It is so hot here, I can wear them year round, with or without nylons.

I have another echo scheduled first thing Monday before leaving for the center. I have a PS apt that afternoon and start weekly Taxol Tuesday.

Been working my buns off at work. I guess it keeps my mind off things.

Have a good day all.

Janie

mzsandy

Tine, PJB, Mary, Nancee - hope you all get to feeling better. My heart goes out to y'all.

I am starting to feel better after my last A/C. I had to get a Procrit shot. Onc wants to check blood next couple of weeks before I schedule rads.

She also prescribed Effexor for the hot flashes. She thinks it did push me into menopause. I started taking it last night - feel a little wierd but so far hardly any hot flashes - YEA!

Hugs to all!

~Sandy

PJB

Thanks for the ideas on the shoes. I'm going out this weekend to shop. I think it'll really make a difference in my quality of life.

Hey, I, called the onc today about my neuropathy (week out of 2nd treatment, numb fingers, hurting feet and knees). Nurse says try 100 mg of B6 twice a day. Just thought I'd pass that along.

mary1220

Hi Girls, Hope Tine is better.Sorry to hear about your friend.Hang in there.My sister had to put her mam. off until next month as her father-in-law was dx. with colon cancer and had surgery and is going to start chemo soon and she has had to take care of him.I got on her and offered to go with her. I may talk to her husband and explain how important it is so he will get on her.I still have a little stragglers on my head. I have about 3 eyebrows though.The muscle and bone pain seems to be a little worse this time. It started yesterday.I have to go to a co. picnic at a water and kids action park today. My husbands co. and we are taking two of the grandkids. I will go and take tylenol with me. We win a T.V./VCR every year. Honestly we have one in every room and our grandkids all have one in their rooms.Good luck finding shoes PBJ. Have fun shopping.Everyonr have a great weekend. Hugs, Mary

Tine

Hope you are all doing well.
Feel kind of isolated here, seing that there aren't that many on the FEC (CEF) so it is hard to compare.
Well, things aren't going so great.
They installed a PICC line before my last chemo as my veins are just giving up working. Had a hard time getting the line into the vein. Lots of digging. Not much fun. For me or the doctor.
Chemo went well so and I was glad I had the line. But.... the PICC line is still bleeding. Now the arm is swollen, sore and I developped a glot. Am receiving blood thinners now. They taught me how to give injections for the next couple of days. Ouch. So am not a happy camper here.
you know, chemo is ok, it is all the other crap they give you that truly stinks.
I am still on antibiotics which I hate as they make me nauseas and dizzy.
I started gaging with this round of chemo. If that makes any sense. I gag for no reason. I don't get sick. Just gag. Just thinking of ice or pills makes me gag.
Was glad to read that other ladies have "fluffing" problems as well. I don't think I ever farted that much in my life. My belly is like 9 months pregnant and I have gained so much weight. I was hoping to return to work soon but with my arm now being out of order don't know what will happen there.
I am ready to pull the line but really have not much of an alternative. They still have to adress the blood clot. I still have bad veins and still need 2 more chemos.
I had my first appointment with the radiologist. I will be receiving 25 rounds of radiation and I think I will get "fitted" next week. I will be starting the beginning of November.
Other then that I am doing fine. Getting the usual yeast infection again. So far mouth is good. Hardly any eyebrows left. But at this point I don't care. I go bald most of the time now. Weather cooled down enough so no need for protection. My nerves are wearing thin. I either cry or get aggresive. Most of the time I am upbeat or at least try but boy I cannot wait for this nightmare to be done. I guess in the big picture. What is a year of misery for a lifetime of "life". Did that make any sense.
Sorry for whinning here. But it felt good

Hugs to you all. I think we all need one of those in a while.


Christine

janie44

Tine,

Ditto on most of what you said. This week has been fairly good except for an unexpected yeast infection. I didn't realize those were common until I looked it up and found out chemo and/or steroids can cause them. Yuck! I start 12 weekly Taxols Tuesday. A little apprehensive. I do not have your same regimen, but I find that not too many others are stage 3, HER+++, 6 nodes positive, and ER/PR negative, so I guess we are all somewhat in our own little boat except for certain things. It's still good to have all the wonderful support. This work week was horrendous. Once I'm there, I get emersed in everything that's going on (a lot) and there's no turning back. I dread the impending bone pain and trying to keep up this pace.

Warm fuzzies to all.

Janie

janie44

Do you all know when the usual time is to have everything checked out to see how well the chemo is working? I finished AC and will start Taxol soon. That is followed by Herceptin and radiation. I keep reading about others having scans etc., and either finding out the treatment worked or didn't. I am just wondering when that happens. I am particulary curious because they found some tiny nodules in my lungs and it will be bad news if the chemo zapped them...it would mean they were cancerous rather than something else.

PJB

Tine, Sounds like you're going through the wringer with the clot and the nausea and all. I'm glad you got a little of the frustration out. Sometimes I also feel like I just can't do it anymore. That doesn't last long tho, but every once in awhile you need to just be able to be mad and disappointed and let it out. I can't believe you learned how to give your own injections. I'm impressed. I go to the clinic 7 days after my treatment for neupogen. And I practically have to blindfold myself before they give me the shot.

Mary, boy, you must have the magic touch winning that stuff every year. Sorry to hear the pain is worse. I'm using Tylenol/Advil during the day and a Vicodin at night. Hope the picnic was fun.

Janie, I know work can be a bear. My bosses have been INCREDIBLY great through all of this. Letting me leave early if I need to, etc. They're not even counting my days I'm off for treatment or because I feel too crummy against my sick/vacation days. (I think part of that is because I look so pathetic, they'd just rather i NOT come in to work) Of course, you feel all the more pressure to really perform when you're there. It's tough trying to keep everything going on the job, at home and with treatment. Mary's doing the weekly Taxol. I'm every 2 weeks. It's a pain (literally) but tolerable. And maybe the weekly regimen will be good to you.


Hugs all around. Hope everyone has a good week.

mary1220

Tine, hang in there we are all here for you.We all feel beat up and depressed and tired of it all sometimes, well most of the time so don't feel bad. Jannie, I am her/2 3+++, no er. or pr.I was staged 1 but onc. said there were unidentified dead cells in two glands and they consider them cancer cells so I am actually stage 2. I had a 1.7cm. tumor so that is what staged me 1.I had Adramicyn and am not stage 3 or 4 so I can't get herceptin but I know its real good cause I know a Dr.(at N.I.H.) that helped develope and test it.He offered to get it for me but I had the Adramicyn already and they are both heart toxic so its not good for me to get the Hercept. now until my cancer comes back. I asked if there was any way to tell if the Chemo. was working because it doesn't tend to work real well on Her/2 cells and if I should get any scans etc. My onc. said there is no way to tell and the scans etc. aren't necessary. We will do a chest x-ray(i think) and liver profile every 3 mos. after for a year but thats about it.He said it could come back in a month and it could be in remission for years theres no way to know.(And we have to live with that)I see where theres a new test to see how good chemo is working but its for er. possitive tumors.Jannie, don't get discouraged though because I have a friend that lives close and she was her/2-3+++ er. pr. neg. and had one gland cancerous I don't know how many they took out but I know she said her gland was oozing it so cancerous and she celebrated 15 years the 1st. of June.She said they gave her the Chemo. they called chicken soup.She did remember getting Adramicyn.The weekly Taxol isn't bad. Theres bone and muscle pain but not as bad as the nup. shots were and you won't have to get them anymore.The farther away from the other stuff you get the better you will feel.I am going in for #5 Tue.I am working Wed. through Fri. and Mon.so I am up and around.The taste buds are gone but Mon. and Tue. I have some taste back but gone on wed. I get a little wore out sometimes but not too bad.I can actually think of water and say the word without gagging now. I too gagged for no reason but its gone now.Still can't eat ice and can't use chipped ice but can use cubes sometimes.Trying to work up to drinking tea again.You will need someone to drive you to the Taxol cause you will go to sleep during the infusion and you will sleep most of the day because they give you a lot of benadryl, after that wears off you will not be able to sleep because of the steroids but everything gets back to normal in about 24 hours.I think the Taxol is much better to cope with.Try not to worry its much better and easier and you won't get sick.You won't even feel the infusion. Good luck to all the girls.Hugs, Mary

janie44

Thanks for all the info. Every first is a little scary, although I expect everything to go well. I was hoping I would not get the Decradon this regimen, but it looks like I might. Sometimes I think it did more of a number on me than the AC did. I know I get the Benedryl and that is fine. I need the sleep. My daughter is going with me. How will I feel the next day? I had planned to work. My chemo doesn't start until 2:00 in the afternoon on Tuesday. Thanks for the encouragement Mary. I usually have a positive attitude and the doctors say it has helped me do better than most. But sometimes, it hits me. Stage 3 is serious stuff and we still don't know about the possible lung mets. Most of the docs are upbeat. Early on, one told me that my cancer is very aggressive and would probably return, regardless of what we do. I later found out he was a post doc student.

PJB

Janie,
I get my Taxol every two weeks, so I don't know what the difference is from weekly, but the day AFTER is a good day for me, I can still usually taste stuff, too. The pain and complete lack of taste doesn't really kick in until the 3rd day. Good luck.

I've started taking B6 for the neuropathy, don't know if it's really helped so far or if it's receding a little naturally, but it is a bit better in my fingers. I also started using tea tree oil on my nails, as a couple of them had started to get a little yellow/brown looking. I know some women put their nails in ice during infusion, but after AC, I just can't look at ice. I'm not sure if the oil will help, but I don't guess it'll hurt.

mary1220

Janie, As PJB said it hits the 3rd day for me too.You will be fine the day after. I get my pains on Fri. I do get some jerky joint pain the night of treatment. My muscles jerk and it hurts a little but its gone by the morning and I am fine.I told my onc. I slept until midnight on the first treatment and he cut my pre meds down since I didn't have any reactions. I get done with treatment about 1:30 in the afternoon and I sleep until 5 or 6 p.m.I eat good when I get up.I go in at 9:15 but have to get blood work and see dr. It takes about 2 or 2 1/2 hours for treatment.You will fall asleep during second pre. med bag as thats the benadry. Talk to your onc about cutting down if you do good (and you will.) It will cut down the steroids also.Good luck and I will keep you in my prayers.

janie44

Mary, Are your treatments on Tuesdays or Wednesdays? After tomorrow, mine will be scheduled on Wednesdays. Well, I have to go get my echo done locally this morning and then make the 2.5 hour trip to the clinic to see my PS this afternoon. (I'm one of the few who have had this type of surgery. I think he likes to view his handiwork). Tomorrow is full of labs, onc apt., teaching apt, and chemo. I hope you all have a good day.

Hugs all around,

Janie

mary1220

Janie, I do mine on Tues.Good Luck and try not to worry. They are prepared and will take good care of you.Enjoy the restful sleep.Its the only sleep I get where I am not waking up every hour or two. Hugs, Mary

janie44

Well. Today's the day. I am feeling nauseous this morning. Never quite got over that after the last AC. I have fasting labs in a couple of hours so I cannot grab the ginger ale or crackers this time. Thanks for all the support. It looks like I may be sleeping on the way home this time. I am an insomniac so any sleep is always welcomed. I will be glad when the infusion is over and I find I can tolerate it. I have had so many allergic reactions to various things in the past. This direct port connection makes it a little more scary. I keep telling myself it will go well just like the AC did. I know the nurses will keep a watchful eye. I think my biggest concern is the possibility of becoming ineligible for continuing the clinical trial. I really want to stay in it. Have a good day all.

mary1220

hi girls, I am up already but very sleepy. I just had to brag about not getting shots for blood, Well guess what I have to give myself shots every day.Filgrastim. Oh what a wonderful thing. I can do it to someone else no problem but to myself? I hope so.I know I will jump and ram it through my leg. I looked at the paper I thought said don't show pt. and it said don't let pt. have, it was a blood wook sheet. Gee! I am so ignorant sometimes, well most the time.The Dr. opened my chart and I saw it and asked whats that and she showed me. I can claim Chemo brain and by-Golly I did just that.What am I going to blame after chemo brain is gone?Hope everything went well for Jamie. Sure wish Lee would check in and let us know how she is. Did PJB find some shoes? Hugs, Mary

PJB

Mary,

Yeah, lots of our June chemo sisters have been pretty quiet. I hope that means everything's going so well they don't need to post.

I don't think, make that i KNOW I couldn't, give myself shots. Those are neupogen for your white counts? Hope you get back up there in counts. My reds jumped from 8.7 to 12 with the Aranesp, so I don't have to have another one.

Sorry to hear you're so tired. I did find shoes. In fact, I splurged and bought two pairs and some of those squishy, comfy insoles. So I'm doing much better. See onc and 2nd to last treatment on Thursday. I'm gonna order pizza in to the clinic to eat while I'm there!

Janie, how'd you do? Hope everyone's coping. We're all in sight of the end.

mary1220

PJB, Glad to hear you got shoes. Yep, its nup. Nurse said it won't be too bad since its everyday shots (the bone pain).Gee, what next. A lady that uauslly sits in the same room with me for treatment is on 8th. Taxol and she is getting fuzz back.I have a couple weeks left.I have a little hair left on top but sides and back are pretty much gone.Well hope the girls are all doing great. Take care and hugs, Mary

janie44

I'm back and I feel great. Everything went well. The Decadron went in a little too fast and I got the famous hot pants (I hate when that happens), but nothing happened with the Taxol at all. I slept through a lot of it and slept a lot on the way home. I feel like I could sleep some more now.

Mary, I have treatment on the 8th floor too. I go to Mayo in Jacksonville. The big news down there is hurricane Frances where she's going to light.

Hugs and well wishes,

Janie

janie44

Re the hair thingee. My onc nurse told me since I was getting weekly Taxol, my hair would start coming back. I said, "You're kidding!" She said, "Now Janie, I am a nurse and you are a patient, I would not kid about something like that. I know how important it is." I was expecting baldness until spring.

The onc told me my radiation would start the week following the last Taxol. That surprised me.

MaryKB

HI Ladies,

I've been reading posts almost every day. Sorry to hear about all of the problems every one is having. I will keep all of you in my prayers.

I had my second taxotere today and its 12:15 a.m. and I cannot sleep. This always happens. I will be so tired tomarrow and I have lots of things to do. Oh well. I didn't get the benadryl today since last time it made me loopy. My dear friend went with me today and we just had a grand ole time chit chatting during chemo. I guess she wanted to know what was going on and how they did it.

I feel great, the taxotere is just a pleasant suprise after A/C. I was seriously thinking about quiting. But now I am exersizing again and it feels good. I have to take off those pounds I gained.

I am taking Neupogen shots every day for 10 days. I give them to myself. It was hard at first, but now I'm used to it. I also give myself Procrit since my Hct. went so low. Its amazing how tired a person feels with low red cells. They carry all the oxygen to the body. Maybe thats why my brain isn't working at times.

One more thing, I am getting terrible night sweats. Is this from the chemo or am I going into menopause? Any one else get nice and sweaty?

Take Care,
Mary

mary1220

Marykb, I get the night sweats also I was going through the pause when I went into this but I think the treatments cause a lot of it. It seems I have them a lot more frequent for a few days after treatment then they slow down a lot just before next treatment so I think they will get less frequent after treatments are over.Glad to hear the Taxatere is going well. I think the old red devil as they call Adramiacyn makes the tax meds. a pleasure. (Not on the days we get the muscle and joint pain and weakness but its much better.)I have a lot more good days now.Hugs all, Mary