Starting chemo January 2009?

Alo123

No Emend here....that's for the tummy right?  i am taking Raglan as needed...and it seem to be working well.  No antibiotics yet.....

taking the Zantac 150 for heartburn!!!  Without fail...that might have been the worst first side effectI got.....almost immediatly!

Renrel

Hi all.  Still in my lovely hospital room.  My counts are way up today.  .28 vs .13 yesterday.  I may be out of here tomorrow.  I am feeling tired but otherwise OK.  I did not get Nuelasta or the other drug this round or even a scheduled blood test.  My doc seems to like to use a little medication as possible.  All I got for nause initially was the decatron (sp) and the one that begins with a Z.  I had compazine and adavan and something else for use a needed.  And I didn't need anything more then the basic he started me with.  There was nothing extra my drips either, other than saline.  I have not spoken to my doc yet so I am not sure what we will do next time. I would be ok with just doing blood tests next time around and not being proactive. I just don't like to medicate if I can help it but I am will take what is needed to be healthy and reasonable comfortable.

I am not sure the costs of current treatment but my surgury came in at about $60,000 of which I only have to pay $400.  Thanks goodness for good insurance.  They did not even give my a hard time about 3 different MRI to measure the same thing for three different hospital I looked at.  I also had a $5000 genetic screen.  And I still have one more semi-major surgury to put in the implants and then the nipple job if I bother. I am getting used to this nice smooth look.

I am working on getting my blood counts up by doing my guilded imagery, Chakra chant meditation (well listening while I relax or sleep or even read, and asking everyone I know to picture me as strong healthly strong willed ect, include my many online friends who have no idea what I look like. I just believe that this can help, like a form a prayer that goes with my view that "g-d" is actually the interconnectedness of all of us and everything that is.  This may be all nonsense but it give me something to do and something for others to do for me that costs them no more than a few moments of time and concentration. 

Horselover44

Hey Ladies, I have been reading posts but not really writing many.  I am on day 10 after first tx of 4TC.  My first week was awful, including the horrible bone pain for 2 days from the Neulasta shot.  Boy howdy, that was some kind of fun.  Then followed that up with 5 days of intermittent nausea and diarrhea.  Friday I was feeling pretty good so went out and cleaned up the floor of the hay barn of all loose hay.  After I finished that up I was exhausted and came back in and got hit with the worst nausea yet. Geez.........  Yesterday was my best day so far so went out to lunch with DH and then hit the feed store.  It was a wonderful day!!!

Anybody else having issues with super dry red spots on their face and hands?  They even hurt a bit.  What do you think and suggest for this?

I hope everyone has a great day.  We are enjoying sunny 75 degree weather today, you can't go wrong with that.

sweeeeetpam

Hi everyone,

                I hope I get an ansewer to this today......I have always done ac and then 3 weeks in between, I have never had one side effect, this time she did only 2 weeks in between and this is my last a/c...............I can barely think or move I am nausea all day long, I do also have some crap going on at work which may be helping all of this................ it has only been 3 days and I work tomorrow, is everyone else 3 week in between..not that it really matter now because it is already IN ME!!!!!.....................I can know feel for everyone who feels like crap!!!! And for some reason my scar is killing me today and it has been since dec29!!! Thanks ahead of time to who every answers me!!! Pamela

    Hi to all of the new ones and sorry for the winneing............. 

holtbolt

Kt57 -  I did not take Claritin (onc had never heard of that helping) but I may try that on tx 2.. just based on what I've read in here.  I'm going to say that I had severe indigestion (and tight chest) on days 3, 4 and 5 (the day after the shot).  I too started taking Prilosec OTC... based on those 3 days I have every antacid, indigestion medicine available in stores in my house right now.  lol...Anxiety could have played a part in mine too.... I'm hoping next round will be easier and I'm going to ask the onc for maybe something stronger for the heartburn... you know when that's bad it feels like a heart attack.. that's the problem.... so you're thinking it's your heart, your heart is racing (mine did), of course anxiety kicks in and makes it worse... and it just spirals out of control... lol.  Yeah, would be nice to fast forward through this... I'm with ya...but May is not that far off... just think...when the weather changes... we will be reborn! LOL

sweetpam - aww... you poor thing... you nearly skated through the whole thing without nausea... I'm sorry you feel awful... (I'm on 4 rounds of TC, 3 weeks apart)....but hang in there... you're done right???  hold onto that.. get through this and it's done!!

sweeeeetpam

Hi Holtbolt,

       No I wish I was done, I still have 4 times taxol, I guess that is tx??? My oc says there are no side effects with that??? except you have to wake your self up in the middle of the night to take a pill 6 hours ahead of time?????

                      And they want to do radiation, I had 3 nodes positive out of 24, my oc says with chemo I will only have 13-14  percent chance of reoccurance...so why the radiation, I think I am done!!! And not going with it, I think my chemo odds are pretty good!! 

                     You know we all hope that the doctors have OUR best interest in mind..........but they also make money by having patients.

         Anyone else saying NO to raidiation??

            I am not a football fan but since I am in Gilbert Arizona.........I better have the TV on that station!!! Thanks so much for listening!! Pamela

               ARE TC AND TX THE SAME??? 

BerkeleyKim

Hi Pam:

I had my 3rd AC last Thursd (every 2 weeks). After 2nd tx I was ok--didn't even need all those expensive Emends. This time I've been more nauseated, but still eating. Took all 3 emends. Think I might have to take a Reglan today, but now I can't remember how it made me feel last time. My scar hurts too, and my hips and arms. I hope that's the AC. I'm going to try to walk today, and maybe whatever has settled into my tissues will get circulating. I went back to sleep today at 10 for 3 hours. A friend of mine who did the AC every 2 weeks spent the 5 days after tx in bed.

Well--you're done with the AC--hurray!!! I hope you feel better soon. Are you having any chemo after ac?

kim

Hawaii808

Hi all,

Had my 2nd tx in the hospital this Thursday because of low sodium the 1st time.  This time was so much better.  For one thing, they were able to monitor the sodium so no passing out this time.  Also, I just feel a whole lot better.  The sodium did drop again but the had me on constant IV and ended up giving me salt tablets before they released me.  I just had really bad indigestion Thursday night and Friday day.  They eventually gave me Pantoprazole which blocks acid production and eventually that seemed to help.  I now have a prescription to take it once daily.  The indigestion is really under control now.  If I have a little acid know I just take tums.  I think if you can keep the acid indigestion in check, it really helps with the nausea.  It seems to be helping me.

Got a Neulasta shot on Saturday.  I took a Claritin before getting the shot.  A little while later I started to feel some achiness so I took 2 Aleve and it seems to be keeping it in check.  I also found that walking helps alleviate the pain. 

All in all, this tx has been really tolerable.   I'm tired and don't have much of an appetite but no nausea.  Hope the next 2 will be the same.

Well off to watch the Super Bowl.  Not really into football but I like to watch the halftime and commercials!

bobcat

Sally - My onc prescribed Levaquin ONLY for 7 days one week after infusion.  I asked why not Neulasta or something else and he said "I'm cheap and Levaquin works just as well - if you were in your 60's I'd give you Neulasta but you are only 52 and this should keep you safe."  So, I am listening to him - he is head of Oncology at UPenn and must know what he's talking about.  My only SE with the Levaquin is loose stools and some diarhea - better than constipation!!  I have had 3 treatments so far with the usual but not unmanageble SE's.  My next infusion is Friday and will do the Levaquin again as prescribed.  I agree with all, thank goodness for insurance - so far, between the surgery and treatment I am well over 100K and not even close to finished. 

We just had a lovely 24 hours at the Jersey shore - our bedroom is 2nd story on the bay - awoke to the gulls, birds, walkers and iceboats screaming across the frozen bay - did wonders for my mood and our love life.  Enjoy the Super Bowl if you're into that - my man is.  I just love catching up with all of you.  And... good luck to all who are having treatment this week and dealing with SE"s.

Hug, Bobbi

sjr585

Yes, I take the Levaquin for 7 days, starting the 5th day after treatment,  but I also get Neulastra, but I am 59! Guess he wants to be safe. Really no side effects from the Levaquin, other than what you stated. So far I can really handle all SE's, but the bad taste in mouth.  I am looking forward to Tuesday when hopefully things will taste good again.

hugs,

sally

ktym

Pam, Taxol and taxotere are different, same family of drugs, but slightly different side effect profile.  I'd at least talk to the radiation oncologist  before deciding not to do radiation.  You look young in your pictures and some of the newer information looking at survival benefit for post mastectomy radiation is at least worth talking about with them

YearoftheHat

Wow, I miss a lot when when I am gone for a few days!  

Renrel - so sorry you landed in the hospital!!  I hope you are feeling OK.  Please keep us posted! 

Hawaii808 and ddlatt - it sounds like we are on similar regimens.  I do not know what doses of AC I am getting but will ask this Friday.  The nurse I saw last week did say the Taxol regimen is usually much easier.  I really hope so.  I wish I could say I have had no side effects.  It's OK. Chemotherapy is a good excuse to feel cruddy.  It is manageable and will be temporary - thank goodness!  I would be doing more supplements etc, but am kinda broke.

I ate a salad!  I devoured a salad!  I obliterated a salad!  I needed that!  It was so great!        

I was 100% prescription free before my dx and look forward to getting back to that.  The Eleve did help some but it is so expensive.  I may continue on my anxiety meds once this is all done. I have tried so many and am an expert!  The Lexapro I take now is pretty mild and does help me focus.  Well, Lunesta is a blessing too. I know someday I'll sleep like I did when I was a kid, just because my body wants to rest.    

With my job, I know that I'll be fine, but I may have to be up for a bit of a fight which is not where my head is at right now, so it's a bummer and annoying. 

BerkelyKim, you are in Berkey?  My brother lives in SF and was here recently....took pics of me shaving my head.  I love it there!  But it is so different from where I am from, I have trouble orienting myself culturally.  We are originally from Buffalo, NY (crap city).  We are a little spread out now.

I am feeling better.  Missed the Superbowl but watched Spike Lee's amazing movie about Katrina - more galvanizing than depressing.  Thanks everyone for being there.  This board is the best.

YearoftheHat

Pam -

Sorry you are feeling lousy.  It should get better for you.  Take is easy on yourself.

I was not sure if I would opt for radiation and am still undecided. My doctors did not recommend it but I plan to do more research and may request it.  It does have long lasting effects on the tissues, but I would echo the idea that if it lowers your chance of recurrence, it's worth considering. 

I like to tell people what I have chosen for treatment and why, but I hate to give advice.  This is a hard decision for me too.  I was told without any chemo or rads my chance of recurrence after surgery is 25%, with only chemo 8%, with only rads 13%. My onc did not have a figure for the cumulative effect. 

I too am not sure rads are worth it since, frankly, I am concerned about the cosmetic outcome.  I was really attached to my boobs. 

I am cackling right now.  Sorry, I am ill bred. 

Hope you feel better soon!  

mimi07

Pam, hope you are starting to feel a little better...

As for radiation, I am going ahead with radiation because I had a positive margin, close to the chestwall.  I asked the radiation onc wouldn't the chemo take care of whatever that was leftover.  She said when they started doing chemo, there was a period when the doctors thought that radiation would no longer be necessary and they stopped doing it.  Then, the rate of recurrence started increasing.  I am also scared about the long term side effects, but I am told radiation is very effective in killing cancer cells.  So far I went to 2 radiation oncologists and they both recommend me radiation.

I know doctors make money from having us as patients, so you have to be careful.  I was skeptical about the Neulasta shot, as I am getting one routinely, and my other oncologist said he doesn't give the shot unless it is necessary.  I tried to get out of it, but my doctor told me that if I get an infection I would be hospitalized and I got scared.

It's day 11 after my 2nd TC and I'm feeling better!  My blood count was low so staying close to home for another couple of days.  Hope everybody is feeling better!  Mimi

Renrel

They released me from the hospital today. My nuets were up over 500.  I saw my doctor and was trying to understand why I was in the hospital.  He said the drop in WBC was expected as is my rebound but they were worried about what was causing the elevated fever.  A cold which did not worry them or a bacterial infection which could cause me to go septic which would be very bad.  All my cultures came back negative and my counts were up so I am home and on a oral antibiotic and we are not sure what if anything we will do different next time.  Maybe just an antibiotic during the low counts phase, maybe nuelasta.  For some reason I just don't want to take the nuelasta. It does not feel right for me though I can't say why.

On the radiation thing. I still don't know if I will do it or not. I am meeting with a radiologist for the first time before my next infusion.  So far my surgon and the Onc I did not go with both through I could skip it.  My cancer was I think .2 centimeters closer to the skin they it should be to skip it, so it is a calculated risk and I want to get advise from a radiologist for obvious reasons.

time for me to go rest. 

lester63

Horselover - Sounds like you're in the about the same as me as far as side effects and timeline.  I'm also having the little scaly red things on my face and some on my arms.  I also have a rash on my back.  The skin on my face is all of a sudden so dry I look like I've aged 10 years in a week.  A friend I work with who just finished her treatment for breast cancer as I was starting mine has suggested a product called Lindyskin.  I had already started using the moisturizer and went today after work to get a few more products.  It really feels pretty good on the skin, its really pricey though, but at this point I just don't care.  I think it is so strange that there are 5 women in my dept. at work and 2 of us get breast cancer in the same year.  She has been my lifeline!

 Anyone else having nueropathy?  It doesn't seem to be affecting my feet yet, only my hands.    Just as I think I'm on the road to somewhat feeling like myself, something else pops up.  I'm hating this chemo crap right now!

Renrel

I just got a e-mail that my local Wellness Center is suspending services temporarily due to budget problems.  They offer so many wonderful programs free of charge to anyone dealing with cancer.  I just made use of them for the first time a month ago to attend what was a wonderful montly support group and I was looking forward to going this Saturday to the second one and to taking DS to a childrens program they were running.  I know this is minor on the list of things that can go wrong, particularly since I had not yet started depending on them, but it was a really sucky thing to find in my e-mail after two nights in the hosptial.  

I am OK other than still being very tired and one super annoying sore on the side of my tongue and a minor headach.  If it all did not relate to cancer I would not even feel like I could complain at all.  

My onc said I could go back to work part time if I want.  I am thinking about 3.5 -4 hours a day, maybe 10am to 2pm.  Then I can miss the traffic and go home and nap for about 2 hours and start dinner before a friend brings my son home sometime after 5.  So now my to do list for the week includes getting in my LTD paper work in, Get a back to work release with restrictions, getting a request for disablity accommodations in (parking, reduces schedule and phone hearings instead of live as possible), make an appointment to try on the wigs I ordered, call our local elementary and check on Kindergarden registration.  I was think of trying to arrange an early Valentines day date with 

GracieM2007

Hi ladies.  Am reading a little back to see how you all are doing.  I was diagnosed almost two years ago, and went through all of the chemo, etc. that you all are going through right now.  The thing that helped me alot was talking to women who had already been through it all.  And I also was part of a group on this site, and we talked constantly during treatment, to compare notes, and boy was that a Godsend.

 Anyway, wanted to stop by and let you know that others have done what you are doing, and many of us are doing well right now.

My cancer was found in April, 2007.  I originally had what they thought was ovarian cancer, so had a complete hysterectomy in February 2007, to find out it wasn't ovarian cancer.  I was so relieved.  Then in April they found breast cancer.  Kind of a double whammy.  Mine was 1.7 cm, IDC, Stage 2, Grade 3, 1 node positive, er/pr+, her2-, BRCA negative.  I did four DD rounds of AC, every two weeks, then four DD rounds of Taxol, every two weeks.  I couldn't do rads, as I have lupus.  So I went on Arimidex after chemo.  I got the nausea drug that starts with an A (can't remember the name right off hand), with my chemo every time.  I also took Emend, and supplemented with Zofran and Compazine during the two weeks.  I used Ativan regularly, not only for nerves, but it also helped with the nausea, and I had Reglan if I needed it.  I couldn't use Decadron, had a really bad reaction to it, so during Taxol, they used Benedril.  I had shots of Neulasta during the AC, and then during Taxol, they added shops of Aranesp.

My nausea was handled pretty well, although I did end up at the emergency room after the third AC, for IV fluids.  It was the only time I ended up in the hospital though through the whole thing.  I used the hand lotion Cetaphil constantly (someone was talking about red spots on skin, this helped me out), and used the Biotene toothpast and mouthwash for mouth sores, and kept mine to a minimum.  We were kind of manic about washing and keeping things clean, but I think it helped me alot.  As you start Taxol, or those of you already on it, or Taxotere, you might find the skin on your hands and feet peeling very badly.  I got some "Bag Balm" from my drug store.  It's what they use on cows when they get bad spots from milking.  It smells awful, but did miracles for my skin.

I was very anemic during all of my treatment and all of my counts got very low.  I was confined to the home during alot of the treatment due to my counts, but it went a whole lot faster than I thought it would.

Eating was a problem always, so I ate as bland as I could.  I usually was ok the day of treatment and the day after, it was always the third, fourth, fifth and sixth days that were bad for me, and then I started digging out of the hole.  By the time I was ready for another treament, I usually started feeling kind of human again.  It's depressing time after time, but I'm very glad I did it.

All in all, chemo is doable.  Not fun, at all, but doable.

I also had neuropathy.  They started me on a study using Vitamin E.  It really worked for me, and the neuropathy not only didn't get worse, but it actually got a little better.  I have no residual neuropathy at all.

My heart did very well throughout treament and it is still good to this day.

In April I will be two years out.  I did what I felt was necessary for me, doing chemo and all.  Hope things go well for all of you.  If you have any questions, feel free to ask, or PM me.

Blessings to you,

Gracie 

kt57

Gracie:  Thanks for the words of encouragement.  How much Vit E did you take?

misty123

Hi Group,

 I am going for my second tx tomorrow and full of anxiety, am I alone. I hear that the second one is a bit easier for some but I and still afraid and dreading that bone pain from the nuelasta. Does anyone use a Rx pain reliever, I am not trying the claritin I want something I know will work but I never needed anything strong so could someone please recom something that I can ask my onc for tomorrow, something that you have used and it works. I am asking because I have a sic son at home and I need to be able to walk thru the house to at least assist him with some care and last time I wasn't able too and he ended up in the hospital, not because I couldn't help him but because he became dehydrated and pain issues and I wasn't able to keep a better eye on him.

Good health to all.

YearoftheHat

Gracie, thanks from me too.  This is such a trying experience. It is hard to imagine right now that this will be behind all of us.  You were given the same chemo drugs I'm being given, and I have not started Taxol yet so your info is helpful.  I'll need to get some bag balm.  My skin is already awful.  I burned my hand mildly and it is not healing, and I am not really healing where the chemo port was placed on Jan. 2 either.  I can't wait to be back to normal.      

YearoftheHat

Misty, we will all be there with you tomorrow in spirit.  I also have bone pain from Neulasta and have not found my way around that yet.  Don't worry about tomorrow.  You will get through it OK.

jillyG

Hello fabulous Jewels! Had my second AC last Monday and I was dreading it, because I got sick the night of the first one and had a very rough week, but to my shock I didn't get sick at all and I felt fine after about 48 hours, back to myself, but much much more tired than the first AC.  I think getting more tired each time is the norm.  The nurse told me she would give me lots of fluids this time and maybe that would help with nausea and I am guessing that did the trick.  For the first time, I feel like I can get through this and I am so happy I am halfway done.  

Someone mentioned lump in the throat, I have that problem, and I descirbed it to DH as exactly that "lump in the throat".  I think it's heartburn or indigestion.  I feel like there's a big wad of something like bread stuck in my chest and it drives me nuts.  I took Pepcid last time, but this time Tums seem to do the trick. 

 Got Dh to shave the remaining stragglers on my head and now I'm bald....wow, is my scalp ever WHITE.  I thought I was pale until I saw my scalp, now my face looks tanned in comparison.  Not sure if I'm brave enough to be bad in public yet, but it looks way better than it did before.

Have a great night ladies!

Jill 

jillyG

Gracie, just read your post, thank you so much.  I think it really helps to have a reminder that  there are people that have gone through this, they're done and they are doing well, it really helps to here stories from someone who's 'been there'. 

Renrel

Gracie - thank you for the words of hope. 

Misty - Have you talked to your doctor about other options to Nuelasta or if it is even necessary given the pain you are having with it and your caretaker duties?  Though maybe your caretaker duties make it more important to take it and be safe.  Being in the hospital for a few days like I was would be even harder on you.  Can anyone come and help you with your son during the toughest days?  I hate that you have to deal with the worry of being a caretaker at a time when you should have someone taking care of you and be able to step away from your usual responsiblities.  Of course the fact that your son is ill probably hurts you more than your own pain. I know thats how I would feel if my son were hurting.   I will be think of you and picturing a woman who is feeling strong and pain free and glowing with health and love of life. 

Jilly -Glad tx went well.  How wonderful to be half way through.  

BerkeleyKim

Hi all: Glad to hear so many of us are doing ok--one foot in front of the other and we'll get there!

Year of the Hat--yup I live in Berkeley. I like it here too. Need to make sure I get myself out to enjoy it, though.

Hawaii and Renrel--glad you're both out of the hospital and are doing well. Hawaii--will your next tx be in the hospital? And Renrel, I'm glad you got the ok to work part time--good luck!

JillyG-Glad your 2nd ac went well. I had my 3rd AC last Thurs. I've had different SEs this time. I am a little more tired, although I was able to get out and walk sooner. The night of the 2nd I was really dizzy and had alot of leg discomfort, almost pain in the quads and knees. This time I didn't have that but have been more nauseated. I have had that feeling of something stuck in my throat too. Was told to take the antacids--doesn't seem to really help, though. I'm trying to drink alot but I'm not as determined as I was after the 1st tx. Ginger tea helps me, and ginger brew too.

Misty-good luck with chemo tomorrow. My thoughts are with you as you fight this and take care of your son. Maybe ask your dr. about the Neupogen shots instead. The Neulasta didn't work for me until later, so they gave me 3 shots, one each day starting on day 7 of Neupogen. It's a hassle to go in, but I didn't get the pain I had with Nuelasta. I did have to take a few tylenols.

Anyhow, Hugs to all.

lisalisa

Gracie - thanks so much for your post!  it helps to hear if from someone who has been there!!!

Misty - I'll be doing chemo #3 tomorrow.  I dread it too.  But, tomorrow marks my 1/2 way point so I'm using that as my carrot to get me thru!  I'm doing T/C.  I'll be thinking of you tomorrow as I sit there for hours having poison pumped into my body (small attempt at humor....sorry!)

Renrel - glad you were released!  sorry about losing some of your local services.  so far, mine are still intact (support group, art therapy, writing class, etc.)  But, with this economy it won't surprise me if some go away!

for me, chemo #3 tomorrow.  hoping i can sleep some tonight....i have not done well on steroids as i get too hyper to sleep!  so, if i can't sleep, i'm cleaning the home office tonight and sleeping during chemo tomorrow!

i'll check in tomorrow!

lisa

GracieM2007

Kathy :  I took 400 IU of vitamin E, twice daily. 

Misty: For pain, I used Lortab all the way through treatment.  My onc was really good about it, never argued with me if I told him I needed it for bone pain.  But it could make you a little drowsy, I can get by using it during the day, but some people are more sensitive than others.  If you think it will be too strong, just ask your onc.

Year of the hat:  If you are having healing problems, make sure you bring this up with your onc when you see him/her.  There may not be anything they want to do at this time, but at least let them know. 

 Jilly:  Glad to be of what little help I can.   

 You are all very strong women, and you will get through this.  Always remember us 'old timers' are around if you need someone to lean on.

Gracie 

  

mamasarah

Hello Warrior Jewels - 

I guess (hope?) I'm through the worst of the SEs from tx#2 (TCH) of 6.  It's day 7 and I had more nausea, but less bone pain from the Neulasta.  I credit claritan for that, since last time time without claritan it was really bad.  Day 6 seems to be the crescendo for me - kind of a last  gasp as the poison leaves my body.  I used my lamaze breathing to get through it -  but no baby to make it worth the effort.  I don't notice anything really cumulative about this, so  here's hoping those of you going for #3 have an easy time of it.

I have small bumps/rash on back and shoulders.  I was told that it might be the taxol/taxotere.  I'm trying not to pick at them but it's tempting.

Foods that seem to work best are salty - V8 juice, soups, goldfish crackers. Water and sweet stuff tastes disgusting.  Haven't been able to have my coffee yet, sigh.  I wonder how much of my dull headache is caffeine withdrawal?  Dh wants me to stop eating red meat so I'm trying to eat it during these dark days in hopes that I will associate it with chemo. 

YearoftheHat

Same here on the sweets, sort of.  Pure sugar seems to help settle my tummy, but anything with high fructose corn syrup, I can't even think about eating.