Any May 2009 Chemo Starters?

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  • Gramof3
    Gramof3 Member Posts: 301
    edited May 2009

    Hello May Chemo Starters--

    I'll put in a few comments here from my experience as a "February Fury"--but remember, every oncologist has his/her own way of doing things; some are more conservative than others, so what my Dr. says/prescribes may not be the same as yours.

    MUGA : This test evaluates cardiac function of the left and right ventricle.  Some chemo drugs have the potential for causing heart damage (my onc. ordered one for me before I started A/C as a baseline, then I just had one last week at the finish of A/C and before Taxol).

    Mimi: Glad the port worked for you.  Chemo tends to dry you out and constipation Yell tends to be a SE.  Drink water until you think you can't drinka anymore, then drink another couple of glasses!  I learned this the hard way!

    Linda: I didn't overdo it on the Ducolax--my downfall was dried apricots.  I was so proud of myself, eating a healthy snack that would alleviate the constipation, that I ate a big bag of them in one day--do not do this.  The results were awful.

    HY66:  It sounds as though the Emend plus kytril and deca. are doing the trick.  I haven't found any way around the fatigue--my blood counts dip and about the best I can do is nap when I get the chance, then take advantage of the "good days" when I'm on the upside.  My onc nurse says days 3-5 tend to be the low point for SEs.  As to the antioxidents, I don't know--my onc says "no supplements" during my A/C, T without asking him first, but I'm sure there are others who have a more liberal take on them.

    Sherrilynne:  My nurse recommends Tylenol--no Alieve or ibuprofen.  My hair began to fall out about Day 17 after my first infusion--not in clumps, just more in the hairbrush and in the shower. It didn't get serious until after the second infusion--around Day 7 or 8.  I had my head shaved then.

    Sfritz:  My white blood cell count got very low and now I take a Neulasta shot after the infusions.  You can take them between 24 and 72 hours after your treatment.  The shot stimulates the bone marrow to produce more white cells, which are the ones that fight infection.  My onc also warned about not eating at buffets--it's all about avoiding infections/colds, etc. as much as possible. Last night a friend and I went to a restaurant that has a buffet in addition to menu orders. After I watched people dropping serving spoons back into the green beans and the mashed potatoes, plus children reaching up and touching food, I understood what the onco meant! 

    Lemonjello:  You are NOT nuts concerning the chemo. When I was diagnosed and weighed the options, I decided that I would fight this with everything I possibly could.  I'm 62 yrs. old, single  kids are grown, but I'm 4 years away from retirement and I plan to enjoy my grandkids for years to come, so bring on the chemo, side effects, whatever--I can do this.   

    Ladies and EH: You are all amazing.  It doesn't matter when you start(ed) chemo--it is one scary journey.  Sometimes we don't get the support we need or would like to have (as Anjii knows!)--I have a sister who can't believe my coloring hasn't turned gray (???)--that's where this thread comes in.  No one understands this like someone who is living it.  So, take heart, we are legion and WE WILL GET THROUGH THIS.

    Whew!  Sorry, didn't mean to "talk" so long.  Just remember, you are awesome!   Helen  

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  • lassie11
    lassie11 Member Posts: 1,500
    edited May 2009

    Sukiann - I am not entirely sure why the CAT scan has been ordered although I was told very early on by the surgeon that it was likely. I have the sense that it is all part of the many tests that are to set a base line of information prior to chemo. It was clear from the phone call Friday that the CAT scan was to precede the first chemo. I don't know if it has to do with my age (61) or with the fact that this is a recurrance or just because that is what this oncologist does. It may also have to do with the fact that I am in Canada and there are no issues around who pays for one more test. I will ask when I next see the oncologist as I wonder what they are looking for - but I am so happy to be able to go to the family wedding feeling well that this isn't the time to ask!  Thanks to all for your reports - this does sound like something we can do!

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  • sherrilynne
    sherrilynne Member Posts: 65
    edited May 2009

    Thank you Gramof3.  I was doing pretty good yesterday the day after treatment, but today I am aching all over and feeling yucky.   I would like to feel better before I go to work tomorrow.   Thanks!!!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Sukianne - I had a cat scan and a bone scan which my onc wanted only because I have been a smoker for many years and she wanted to surprises (me either).  Fortunately, they were clear.  I think the hardest part about the chemo is that you feel ok for a couple of hours and then feel crappy again after that.  I keep bouncing back and forth.  Not real sick - just not feeling well in those down times.  Oh well, only 3 more A/C's to go and then4 Taxol's.  Oh God, it makes me ill just thinking about doing this again!  Good luck.

    Linda

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  • luvtheocean
    luvtheocean Member Posts: 87
    edited May 2009

    Ladies-

    I have been reading all these posts about A/C-T.  I am only having 4 AC 3 weeks apart.  I am Stage I grade 3.  Should I b concerned??  I start Wednesday and the anticipation is making me nutty than a fruit cake!  I read on some of the other boards that sometimes the meds in your IV make you sleepy.  That would be FABULOUS with me........as a matter of fact, could someone just give me a 3 month sleeping pill and wake me up when this is over!? Innocent  LOL

    Gramof3-  So, how do we keep from turning gray???? I just keep thinking of all the women and children I have seen in the grocery, etc. and they always have this terrible pasty or gray color.  I worship the sun basically and spend the entire on the lake in our boat.......lots of sunscreen this year and hope that will keep me from looking like death! Sealed

    Hugs to All!

    WE are lucky to have this forum to help each other along!

    Becky

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  • TN36
    TN36 Member Posts: 16
    edited May 2009

    Hi Girls,

    I had a lot to read and catch up.

    LRM216 I was wondering what the exact dosage is for the claritan and aleve. When do you start taking it and when do you stop. Is it just one claritan and one aleve? Please let me know, I am wanting to try it too.

    Mary to access a mediport the RN needs a special needle and then she will feel around the port and find the center that has a hole. Kinda like a button, then she will stick the needle inside the hole and be able to pull blood back. She will draw blood from it and infuse meds through it, then it will need to be flushed. Typically people are numb around the area, but some are not. My cancer center told me they had the lidocaine spray to put on it and numb it. I am glad I am waiting 2 weeks after mine being place, b/c it has been very sore the first couple of days and almost 1 week out, it is just tender at times. And I don't think that I would want anyone pushing on it. I think by May 11 (1st dose AC) it should be ready or shall I say I will be ready for someone to push on it!

     My Dr has given me scripts for Kytril, Emend, Zofran and phenergan. He told me to start taking b4 chemo and keep a constant level in my blood stream. But not sure which meds to take and how many days b4 chemo to start. I know the Emend the day of and day #2, #3. But as far as the others, no clue. Has anyone started taking meds b4 infusion day?

     MUGA SCAN to answer this question. They will put an IV in and remove blood from you and then mix it with radioactive isotopes, then reinject you with the blood which has the radioactive. Then you wait for a few, then you will go under a plate which has cameras in it, It will take pics of your heart and this will tell the DR your ejection fraction which means how well is your left ventricle pumping the blood. Anything above 60% is good! The reason for this is b/c AC can cause damage to your heart and cause congestion in the heart, Meaning it could cause you heart not to pump as well as it did. You will probablly have the MUGA test a couple of times during chemo. To monitor your heart!!

    HTH

    SHELL

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  • TexasRose
    TexasRose Member Posts: 740
    edited May 2009

    sherrilynne- Sorry you are feeling yucky. I hope you get to feeling better soon!

    Linda- I'm so glad that your scans were all clear!! Yeah!!

    Becky- I hear ya on the looking gray. I live in my pool all summer. I do not want the death warmed over look!! It is basically impossible to avoid the sun in the summer here in Texas. Cool

    Shell- Thanks so much for the info on accessing the port. I'm a month out from getting mine and not looking forward to anyone pushing on it. It doesn't hurt like it did when it first when in, but it is still tender. The first couple of weeks I didn't think I could stand to have it in, but it has gotten somewhat better. I hope yours does too and soon.

    I am worried and nervous about this week. I am calling the nurse today and telling her I will participate in the Avastin trial. I think things will move pretty quickly after that. They were supposed to call me with my appt for the MUGA, but I haven't heard from anyone since Wednesday. This is a problem I have had with them before. Nobody calls me and tells me when my appts are. I need to know!! According to my onc last week, the MUGA is the only test I will need to have before chemo starts. 

    I'm also worried that my onc is not doing dose dense on me. He will be doing AC x 4 (every three weeks) and Taxol x 12 (every 7 days) plus the Avastin or the placebo. My husband tells me to trust him because he is the expert, but I worry about needing the dose dense because I'm triple neg. When I asked him, he said he didn't think there was enough evidence to support that the dose dense was any better. He feels they are equivalent. I'm not sure I believe that and it makes me nervous that I am not hitting this with all I've got.

    Hope everybody has a good day! 

      

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  • TN36
    TN36 Member Posts: 16
    edited May 2009

    MARY I can only tell you this, my onc DR told me that he wanted the best TX for me since I was so young and Trip neg. I will be taking AC every 2 weeks and then 12 weeks of taxol weekly, plus the trial of Avastin or placebo. That is what he thinks will work for me. Talk to your DR to make sure or be honest and tell him, you don't feel that every 3 weeks is aggressive enough since you are trip neg.

    Do you have a start date yet?

    SHELL

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  • princessofpower
    princessofpower Member Posts: 30
    edited May 2009

    how long do these symptoms last? will I be able to go out two days later?

    tis my first chemo - i'm freaked out

    i have cancer everywhere which is definetly no fun - i'm scared and well truthfully so very alone - my family is no help - my friends are good but they have their own lives -

    what is this port thing everyone keeps talking about?

    I have stage four with mets to just about everywhere - whats better a/c or cmf - are people even using that anymore? and can someone walk me through the process - doctors have - but someone who is going through it would be better - can  you tell i'm going a little crazy? i'm still working - dont' want to stop because then all and any routine will go down the drain

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  • TexasRose
    TexasRose Member Posts: 740
    edited May 2009
    Shell- Still no start date. I called the clinical trial nurse awhile ago and told her I wanted to participate in the trial. I am meeting with her tomorrow. I am going to talk with her about it and see what she says since she told me she is now the one who will go to bat for me. From what little time I saw the onc, I am fairly certain that he is not the kind who will put much stock into anything I have to say. But I'm certainly going to try. I kind of got the "I'm the expert here" vibes from him.  
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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Oh Gram - A whole bag of dried apricots????????  God bless you honey, I can only imagine.......

    Hugs,

    Linda

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Yes, TN, ONE Claritan and ONE Aleve - take it before your shot - then take it morning of day 2 and day 3.  Some gals substitute the Aleve for Tylenol, which you can then take again about 6 hrs. later.  I definitely will do it again next time, as I didn't feel what a lot of gals complain about with the bone pain.  Good luck.  And by the way, my onc didn't put too much faith in it, but said go ahead - and try it.

    Linda 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Did you get the EMLA creme, Texas.  Ask your onc for a prescription, it really works well.  You put it on prior to anyone accessing the port, slap a piece of saran wrap over it, and when they use it you barely feel anything.  Also, thanks for the shout-out on my clean scans - you know I was sweating those things out, for sure.  I hate this testing and what comes of it.  Gun shy I suppose from the biopsy!

    Linda

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Texas - are you sure your A/C +4 is not DD.  Mine is and I get mine every other week - and the Taxol X 12 would be equivalent to my Taxol DD X4 - and I heard that some onc's think the Taxol over 12 wks is better than over 8.

    Linda

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  • TexasRose
    TexasRose Member Posts: 740
    edited May 2009
    Linda- No, I know it's not. He specifically said every three weeks. When I questioned him about why I would not be getting dose dense he told me that's only big in NY. Few west of the Mississippi give it and nobody in CA. I knew that wasn't true. I see people from all over the country who are getting it. On the Taxol, he said it would be x 4 every three weeks. The clinical trial nurse said it would be x 12 every week. I don't know if the Taxol changed because of the clinical trial. I just know I would definitely not be getting the AC dose dense on his current plan.
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  • tr55
    tr55 Member Posts: 3
    edited May 2009

    Hi everybody. This is my frist time chatting.  I'vr learned alot, thank you.  I had a lumpectomy (left) and four lymph nodes removed. Dx:ductal,poorly differaated. two out of four nodes identified as isolated tumor cells (I have no idea what that mean). This was done 4/21/09. I see my oncologist 5/21/09.  The waiting is killing me. Also I was er-/re-, and HER+.  What will that frist visit with the oncol. be? Just talking?  I'm anxious to get strated. (Excuse my typing skills) I have a grandbaby due the end of june and I want to be strong enough to babysit her in Sept. when mom goes back to school.  My surgoen said I probably will have six month of chemo, then rad. I'm rambling. Good luck to everyone.

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  • TN36
    TN36 Member Posts: 16
    edited May 2009

    MARY

    Keep me posted

     LINDA

    Thanks for the specific instructions, I will go out and get my claritin. Thanks

    SHELL

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  • deb6563
    deb6563 Member Posts: 179
    edited May 2009
    Texas Rose - the taxol did change because of the study.  A/C dosage is up to your doctor, but the taxol has to be given weekly x 12 in the study.   When was your last surgery?  My onc told me you have to wait 4 weeks post-op from your last surgery before you can start the Avastin trial.  That is why I am having to wait until May 19th.  After my lumpectomy and AND, I had a re-excision 2 weeks later.
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  • knowledgeforpower
    knowledgeforpower Member Posts: 184
    edited May 2009

    Texas  I am on AC and did not have DD.  I had treatments every three weeks.  I have my 4th and final tomorrow.  Had I opted for a clincal study I would have had taxol or taxotere DD.  I live in North Carolina. 

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  • Gramof3
    Gramof3 Member Posts: 301
    edited May 2009

    Becky, As to gray--my color has improved since I started the Neulasta shots.  I'm naturally very fair, don't tan much, burn easily--just have Irish skin.  But, you'd have to know this particular sister of mine--she always has a comment (for my own good of course :} )  I felt like telling her I was hoping for a light gray with a taupe overtone.  Oh well...I just let it go in one ear and out the other.

    Linda,  Woo Hoo for clean scans!  Yes, a whole bag of dried apricots--never again.  I have a good recipe for an apricot quick bread, but it's going to be a while before I can face the little dried up critters. I'm going to try the Claritan and Aleve.  The first Neulasta shot didn't phase me, but the second one hit hard--so I'll be prepared for the next one. 

    Mary, I'm triple neg, too and my AC is not dose dense--it's every three weeks x4, then this Friday I start T x 12.  I'm in the Avastin study and hoping for Arm C!

    Hope everyone has a restful evening...this is going to be a crappy way to spend the summer, but we can do it.

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  • deb6563
    deb6563 Member Posts: 179
    edited May 2009

    Gram  I am hoping for Arm C also.  Anything and everything to keep this from coming back

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  • lolly-pops
    lolly-pops Member Posts: 3
    edited May 2009

    I'm in this group. Starting on Taxol for three rounds. 

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  • sherrilynne
    sherrilynne Member Posts: 65
    edited May 2009

    I agree with someone above wake me up when this is over.   I know I have to start feeling better soon from last Friday's treatment.  Today, I just could not do a full days work.  I'm hoping tomorrow is better.   My port is not as sore, but I still have to have the staples taken out soon.  I would like to feel normal and just be able to work ....simple things without BC.   Wow, it really makes you appreciate feeling good and the simple things. 

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  • lemonjello
    lemonjello Member Posts: 75
    edited May 2009

    First chemo today.  Was very scared, went in with high blood pressure and high blood sugar.

    Did well.  Left in much better shape.  First round of T/C and received steroid and Neulasta shot.

    Drank lots of water, ate well, Aloxi working for nausea.  Considering all things, being diabetic and 65, I am so grateful to the Lord for having looked over me and getting me through the first round.  If the chemo proves too harsh for my kidney disease and we have to halt it, at least i got one round of chemo.  They told me it peaks at 7 days.  Hopefully my kidneys will be ok.  I don't take many risks, but i took this one and i hope it doesn't backfire.  My bs is still high from the chemo but blood pressure is normal now.  My kidney specialist will check me out next week to keep close tabs.  I'm told tomorrow i will feel very fatigued.  I need rest now.  It was a big day for me.

    I don't know why this text is double spacing .....?????   I will be getting chemo once every 3 weeks for four times.  I'm told my dose was adjusted down for my risk factors.  I hope all of the newbies here have as uneventful time as i did.  No port, just three needle sticks before they found THE vein...ouch.  But if that's what it took...

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  • Sukiann
    Sukiann Member Posts: 310
    edited May 2009

    I'm glad to report that I don't need the neulasta shot!! I went for my blood work yesterday and the nurse practictioner said my count isn't low enough for her to give it to me.  She said I should be ok and my counts will come up for my next round two weeks from now.  That being said, I have to take my son to the doc today because he has something wrong with this leg and it hurts to put pressure on it.  I am going to take him to the walk in hours and I probably shouldn't because this is the time when all parents take their sick kids in.  Hope I don't catch anything.  I'm going to be very careful and keep washing my hands and use hand sanitizer also.

    Sherrilyne - you will feel better.  It does get bettter the next week.

    lemonjello - rest, you need it!

    Also, ladies up there, don't worry about your color - you need to stay out of the sun with chemo.  Remember, sun is the number one ager of skin (I think that line was in glamour magazine sometime in the 1980's and I'll never forget it)

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  • TexasRose
    TexasRose Member Posts: 740
    edited May 2009

    tr55-  Welcome. My first visit with the onc was mostly just talking. He did do a physical exam of my mastectomy area that only lasted a minute or two. Listened to my heart and checked my scar. 

    Shell- I'll keep you posted. I'm going to the hospital today to sign the papers for the clinical trial.

    Deb- My surgery was April 3rd, so I am almost five weeks post op. They said they wanted me six to eight weeks before chemo starts.

    knowledgeforpower- Your tumor is hormone positive? I am triple negative and have always heard dose dense is the treatment for us, but that is not what I am getting. Good luck with your treatments!

    Gram- You are the first person I have seen who is doing the same treatment I will be! Nice to see you! I am hoping for Arm C too.

    lolly-pops- Welcome!

    sherrilynne- I like the wake me when it's over thinking! I hope you are feeling better soon. And yeah, I really miss the days when I was healthy (or so I thought). I can't wait to be normal again and I will never take it for granted anymore.

    lemonjello- Glad you got your first chemo behind you. I hope that you are able to tolerate your treatments. I'm sorry that you have other health issues that make this even harder than it already is. Rest up! You deserve it!

    Sukiann- Yeah on not needing the Neulasta shot! Be very vigilant about going to the walk in clinic. You don't need to catch anything.

    I don't really worry about my color. In fact, I am pretty anal about slathering on the sunscreen. But I live in Texas and we have a pool. I spend a LOT of time outside and I get color whether I want it or not. Being in the pool is one of my most favorite things in the world and I'm not giving it up. I am buying a higher SPF sunscreen this year and will cover up more, but by the time the pool water is ready, I will be ready for something fun and that gives me pleasure. I heard a dermatologist say on Oprah once about the sun and aging. She said if we covered up and stayed out of the sun, we wouldn't need any of these high dollar skin products. I do my best, but Texas summers are wicked and I refuse to stay inside. I love the outdoors too much.  

    I am going up to the hospital to sign the papers for the clinical trial today. I'm also going to physical therapy to get my lymphedema lesson. The PT I'm seeing is supposed to be an LE expert. I only had five lymph nodes removed and they don't think I will have a problem, but they routinely send you for PT if you have five or more removed. My MUGA has been scheduled for tomorrow afternoon. I hate those kinds of tests, but guess I better get used to them.

      

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  • lemonjello
    lemonjello Member Posts: 75
    edited May 2009

    Day after, feel amazingly well.  Little bit of spacey feeling, tired a bit, was up all night going to the bathroom.  Appetite fine.  Blood sugar high from steroid but going down.  My infusion lounge was nice, private suite w/ adjoinging bathroom, lounge couch and tv!  The only mistakes i made.....not checking the IV bags to make sure they were labeled with my name and the proper drug....yeek!

    Plus, they gave me a folder all about chemo, no prior class or seminar.  Just a brief discussion over the phone three days before.  Well, the folder looked pretty serious so i put it off to relax while getting the drip, put my headphones on and listened to music while watching a cooking show on tv.  Well, late last night, i could have used the three nurses and doctor that were doting on me, because after reading that folder i had dozens of questions. 

    I know this is the just the beginning, but i am grateful again this morning for waking up and being able to cook my meals and read the paper.  I was told to expect fatigue.  I guess that comes tomorrow when the steroid wears off, and then of course, when cells begin to die continually, i will get the SE.  But the ease of the past 48 hours has been a blessing for my family.  They were worried and now they are encouraged and relieved.  Think of the caregivers!  I remember i had a minor stroke a week after my husband almost died.  My aunt had her first heart attack taking care of my uncle with Parkinsons.  I spent all the night on the phone with friends and family thanking them for their prayers and support.  Everybody slept well last night.  I hope that all the members here have support and prayers.  I saw many people leaving by themselves after getting chemo, and i wonder if there are organizations that can assist them?

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  • Burkiworks
    Burkiworks Member Posts: 18
    edited May 2009

    Hi Princess of Power,

    I'm sorry nobody's gotten back to you yet. It's such a scary thing.

    I cannot answer about chemo regimens, I only know what I've heard and gone through myself. I have stage 4 also, not everywhere, but all around intestines, bladder, kidneys, etc. and a couple nodes too. I just had my first of my second go-round. Finished up a dozen sessions of Taxol end of Dec. It did not hold the evil devil at bay, so here I am, just finished my first of four Taxoteres last Thursday. Not too terrible side effects, but not fun, either. Slept almost constantly since Thursday, which is just fine with me. Have had some nausea, upset tummy, headache, diarrhea and jitters, but I'm handling it as best I can. As long as I don't barf, I'll be happy.

     Talk to your oncologist and his/her nurses, but look on the other threads on this breastcancer.org site. There's so much info and so many caring, sweet people here.

    Don't suffer alone. Write to others here when you can. Maybe respond to a particular person if they have something that means something to you.

    Hang in there. We are all in this pickle together and we can have some good times left in front of us. I know so many folks celebrating five years, ten years...it's just amazing!

    Big hugs, sweetie.

    Joanne B.

    Roseville, cA

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  • MBCR
    MBCR Member Posts: 161
    edited May 2009

    Are you in the Tailorx trial?

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  • Nico1012
    Nico1012 Member Posts: 1,492
    edited May 2009

    PrincessofPower ~ So sorry you are going through this with so many unanswered questions. I am not Stage 4 so I really can;t address your chemo questions but one good suggestion might be to go to page one of the discussions and scroll down until you find "Stage Four" and click on any current topic. If you post your questions there the brave and wonderful ladies there who have been through many treatments will be more than happy to answer your questions from their own experience. Another suggestion would be to ask your onc or contact the American Cancer Soc. in your area about joining a support group. There are a variety of web sites that address just stage 4 or just young cancer patients such as Young Breast Cancer Survivors.org Please come back often and let us know how you are doing. Prayers going for you here, you can do this!

    Nico

    Never give up. Never surrender.

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