Starting chemo January 2009?

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited April 2009

    Hi Lisa:

    I met with my rad onc last month, and have my simulation is scheduled for mid May, right around when I finish chemo. She wants me to start 2 weeks after chemo ends, so around end of May. I wanted to wait til after son's graduation 6-14 from UCSD, but she doesn't want to wait, and will only give me a day off. But that's a question you might want to ask--how much time between chemo and rads and how they feel about breaks if you have something scheduled. Also,  how many sessions, and I forgot to ask about "boosts," which I've read about here.

    At this point I'm getting around 6 weeks to the chest area only. I'm still a bit anxious that she doesn't want to do the under arm area, but she felt that the surgeon did a good job of getting all the affected nodes. So you might want to ask what areas they plan to zap and why.

    Also, she told me that local recurrence is reduced from 30% to 10% in my case, but overall survival isn't affected. I want to ask about that. Doesn't make intuitive sense to me.

    I asked about swimming, and she said fine but keep an eye on the skin and keep it covered up from the sun. She also recommended getting aloe from Trader Joes. I want to find some loose cotton clothes and camis--looks like peasant blouses are back in style!

    Good luck! Let us know what you find out.

    kim

  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited April 2009

    km47--Good news on the neutrophils. Hope they keep going up and you get home soon!

    JillyG-Big Hug!! CONGRATULATIONS on finishing. That AC was such a drag. Glad you're already feeling better and getting that hair back too!. Keep us posted!

    kim

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2009

    Lisalisa--Hey.  I am not supposed to rads, though it seems there are many around with my same bc status and they've done rads.  Good luck

    Wore my wig out in public for the third time and felt okay.  I didn't see second glances much, although I wonder if it's because I just didn't notice this time.  Still looking to see if any fuzz is starting as I go through the taxotere phase of my tx.

    Have a great Sunday.

  • KM47
    KM47 Member Posts: 65
    edited April 2009

    Lisalisa,

    I am seeing the radiation oncologist on Thursday to find out if I am having radiation...Of course in order to be able to see her I'll have to get out of hospital first!

    K.

  • kt57
    kt57 Member Posts: 425
    edited April 2009

    lisalisa: I'll have my last(6th) TC on April 16th.  On that day, my onc will schedule an appt with my rad onc for the end of April for the simulation and scheduling -  then will start 3 weeks after my last chemo.   So I bet we'll be close in start times.   I have been so lucky that my infusion center is literally 100 yards from my office in the hospital... radiation is a different story - I'll have daily travel of 3+ hours, not including treatment time.    I've had lots of people offer to drive, so I will definately accept the offer to make the time go faster.

    I am on DAY 11 of TC #5 and this weekend is the first time I've had any energy in weeks --- what a great feeling!!  Have been reading all your posts but not writing much.   Went through a "fretful" period where I was worrying about all kinds of things -- like whether the lumpectomy was the right choice.   My breast surgeon and onc assured me it was the best decision -  re-read all the literature from back in November -- am comfortable once again with that choice.  Am hoping that MRIs are the follow-up of choice, pricey or not.

    Well, I accomplished something today --- I managed to a) find a picture of me ( I'm usually the one behind the camera), b) figure out how to edit it and c) put it here in place of my gardening avatar...not bad for a technologically challenged old lady!   This one is from a great family vacation to Mexico. 

    HoltBolt: who's your Idol favorite?   I'm liking the fellow from Milwaukee - he really picked the right Rascal Flatts tune last week -- suited him well. 

    KM47; I was severely neutropenic with my first round of chemo --- once those white cells finally kicked in, they reproduced like rabbits --- hope you're back home soon.

    Well, Jewels, hope everyone has a great week --- I think we all get to be aunties to Patti's grandbaby!! 

  • Renrel
    Renrel Member Posts: 497
    edited April 2009

    I had a nice weekend but it still suprises me how fast I get tired.  Saturday night DH attended a friends b-day celebration at at resturant.  I am at my low point for blood counts so it may have been stupid but I have been doing well with the nualasta so I decided to chance it since this is one of my best friends.  I was careful to order cooked food and stay away from anyone who seemed ill.  But just sitting at a table chatting and eatting (and drinking one alcoholic beverage) for 4 hours and I felt worn out.  Then in the morning we were having a cousin over for brunch- just bagels and lox, but after setting up the table and again eatting and talking for a couple of hours I needed to take a long nap.  But after the nap I found the energy to walk to the park with DS and DH.  I even played goalie for awhle for DH and DS as they kicked a playground ball into a soccer goal.  It was very very very low key, with the goal being more to teach DS about the skill of passing to someone who is open and making him run around to wear him out while we stayed relatively inactive. 

    The next couple of weeks are going to be trickly food wise.   Passover starts on Wednsday night and I all the passover foods tend to be very binding, which will not work well with the already binding chemo related drugs.  I need to stock up on lots and lots of fruits and vegs and hope the whole grain matza is easier on my system than the regular stuff.  I was also told to avoid meat and chicken, that they too can be hard to digest.  I am really not into the holiday this year but I have always tried to be true to the basic expectations of it and will try to do it this year as well.  In part I want my son to see and understand what we do on the holiday, even if it is challenging and in part it is my ritual and I want to be true to it.  I will not injure my health over it, as that is not acceptable to Judism, but I am going to try to follow the rules as best I can. 

  • KM47
    KM47 Member Posts: 65
    edited April 2009

    Thanks kt57. The doctors have now said they want me at 1.0 before they let me go home, but they're confident that, as you say, once they start reproducing they go up quickly and that tomorrow I'll be at 1.0 anyway.

    How long were you neutropenic for? Were many changes made to your treatment to address it? 

    My doctor said I may be given the G-CSF shot as a matter of course with my last two treatments but I've managed to avoid having to have it this time around since the neutrophils have come up on their own (much to my relief - i was a bit nervous about the shot).

    Renrel, best of luck with the diet over the next two weeks. Look after yourself as best you can.

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    Thanks for all the feedback on rads!!!  I started a new thread on the rads board and got some good feedback there too.  My questions are ready for tomorrow!

    kt57 - we're on the same schedule!  my last (and 6th) T/C is on April 14th.  My infusion center isn't too far away.  My rads will be done at UCLA.....about 12-14 miles from my house but can take an hour during traffic times.  So, I'm going to try to schedule for late morning after traffice dies down.  But, will still take me about 2 hours round trip per day with parking, etc.  ugh.

    km47 - hope you're out of the hospital SOON!  we'll have to compare notes on rads after your appt on Thursday!

    renrel -  my DH is Jewish and I'm not.  In the past I have tried to observe Passover with him, etc.  This year, I just don't have it in me.  I don't even know if I can deal with MIL's Passover dinner.....I don't like her cooking on a good day....and now that I'm so particular about what I eat, I may just pass on that too. 

    ok.....off to bed early.  I have to leave my house early to meet with my rad oncologist.  What was I thinking making an early appt on a Monday morning?

  • Renrel
    Renrel Member Posts: 497
    edited April 2009

    KM47 - My neutraphis came up on their own after 2 nights in the hospital.  I have gotten nuelasta each time since with no other changes to my treatment and have not had any other episodes.  Hopefully you will have similar results.

  • Alo123
    Alo123 Member Posts: 308
    edited April 2009

    Renrel.....my mom always makes the stewed prune concoction for Passover.....it seems to help.  I just always eat light over Passover. With the exception of the Matzoh ball soup!!!

  • rsben70
    rsben70 Member Posts: 137
    edited April 2009

    Hi all hope everyone is doing great.  i am feeling better after being sick and my wbc and neutrophil levels being very low.  finished my last taxotere and gemzar, and have my first AC is thursday what a way to spend Easter. well i just hope my counts are high enough to do this the sooner i start the sooner i'll be finished.

    hugs to all

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2009

    rsben70--I hope you are feeling better soon. 

  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited April 2009

    It's corny, but when I feel this way I think of old Superman episodes when he was exposed to Kryptonite and all his funtions slowed to a near stop.  I do not have the stamina to read posts from over the weekend.  My eyelashes and eyebrows started falling out a few days ago.  I'm still bald with very faint stubble.  My joints ache.  My hands and feet keep going numb and I am having frequent hot flashes.  I can't say I am enjoying any of this but it's OK.  It seems now that the next 7 weeks of Taxol may not fly by as quickly as I'd hoped.  

    I am at home for a moment and will head back to the office now.  

    Hope everyone is doing OK and was able to at least rest this weekend.  

  • kt57
    kt57 Member Posts: 425
    edited April 2009
    KM47: After I was neutropenic with the first round, I got Neulasta with round 2 - I was one of the 30% who get the nasty side effects - however my white count was good. We changed on Round 3 to neupogen injections for 7 days after, which has also been effective, with less se.   
  • KM47
    KM47 Member Posts: 65
    edited April 2009

    Just an update - my neutrophils got up to 0.5 all by themselves yesterday - no shot required! My fever is also gone. Before they send me home from hospital they want the neutrophils to be at 1.0 which they think I may well get to today. Can't believe I've almost been in here a week!

    K.

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    I met my radiation oncologist today.  I really liked him and I'm going to go with him rather than meeting the others.  I'm very lucky that UCLA is at the forefront of technology with radiation.  It's actually pretty cool how "techy" they are!

    My treatment plan is for 36 sessions....28 directed at the breast and 8 "boosts" that are targeted to the smaller area of my mastectomy/diep scars.   I scheduled my simulation for a few weeks after my last chemo. 

    My meeting went better than expected....I was really dreading it.  Now, I know a bit about what to expect, I can breathe easier. 

    One more chemo, 36 days of radiation, a few minor surgeries and I'll say buh-bye cancer!!!!!  Don't ever come back!

  • ladyjane54
    ladyjane54 Member Posts: 192
    edited April 2009

    hi ladies:  I am still in Texas getting to know my new granddaughter.  If I do say so myself she is beautiful.  She is 4 days old today.  She is having jaundice problems so has to sleep on lights and not liking that much.  My daughter has gotten overwhelmed a few times in the past couple of days but overall is doing well.

    I am sorry to hear you are still in the hospital Km47.  You are about to break my 8 days record.

    I am jealous of all you jewels finishing up chemo and moving on to rads.  I wish I was still moving forward but I guess God works in mysteries ways because if my treatment had not been stopped because of the pnuemonia I would not be here holding my granddaughter.  I return home on Thursday and see my doctor on Friday so I will be making a decision about what's next or not next at the end of the week.  Now that I am feeling better I am thinking I do not want to stop treatment and hope for the best.  I am going to tell Dr. I NEED to finish to give myself the best odds I can especially after holding this new baby.  I want to be around to watch her grow.  I am going to ask him about switching meds and about some of the other drugs you guys have mentioned getting to control WBC.  I have gotten neulasta shot after every treatment and ended up dropping to zero WBC 3 out of five treatments so why has he not tried something else besides the Neulasta???  Good question I think.

    Patti

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    Patti,

    congratulations on your new granddaughter!!!!  what is her name?

    and...as an aside....after chemo #4, i thought I couldn't go on (belly issues from surgery). but i went on.  after chemo #5, with all my nausea issues, i thought the same.  but, like you, i'm plodding along for my final treatment.  i also NEED to finish....i have to do all that i can do!  i just wanted to say that i "get" what you're saying!

    Lisa

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2009

    lisalisa, what is your chemo?  Are you also on the weekly taxol?  I can't remember.  Wow, I have had such issues with inability to multitask.  I go so slowly, I can't believe it. 

    Have a great Monday!

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    Jess,

    I'm an every 3 week T/C girl (taxotere & cytoxin). 

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    oh...one other thing.....for those that have done reconstruction...have you had other docs comment on your reconstruction?

    maybe diep is so different...but my oncologist, my nurse practitioner, and today my rad oncologist...ALL have commented on how nice my breasts came out.  i know they are looking at them from a medical perspective...but still....its WIERD.

    i just kind of nod or complement my plastic surgeon.  its just wierd to be a specimens sometimes kwim?

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2009

    I had one breast done with expander implants.  And yes, docs comment on it.  I feel VERY self conscious-I go to a cancer center which is also a teaching college and so I have lots of interns along with the onc, ps and bs. 

    Lisalisa-sorry I forgot you are on taxotere as well.  My memory has really go awry.  I hope it doesn't last!!!! Frown

    Hugs!

  • Renrel
    Renrel Member Posts: 497
    edited April 2009

    I too have had doctors comment on my expanders.  I find it reassuring that they, who must see lots of these, think mine came out so well.  I know not everyone's reconstruction looks good.  I usually comment that my surgen is very talented but does have some bedside manner issues, as do many PS's so that they can take this information into account in making referals.  My PS works for me, though we had a few bumpy momentst, but may not work for other women. 

  • shockedat39
    shockedat39 Member Posts: 252
    edited April 2009

    Hmmm...I'm a little flumoxed...other than my follow up in January with my breast surgeon, no doctor other than my PS has actually seen them (naked, anyway).  Now I'm wondering how/why your doctors are actually seeing your expanders?  Are you getting them examined regularly?  Or am I misunderstanding and you're talking about just through clothes?

    If anyone actually told me my expanders look good I would laugh...I think they're horrible, LOL.  I mean, I think they look the way they're supposed to look but I despise them and can't wait until I can get the exchange!

    Hope everyone is feeling well today.

    Diane 

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    Diane,

    I don't have expanders....I had DIEP.....they took fat/skin from my belly and made breasts out of them!  So, other than that I'm missing nipples, areolas, I look like I have breasts!

     And, yes, my oncologist, radiologist....all of them want to see how I'm healing.  So my exams involved opening the gown and having them looked at!

    LIsa

  • Alo123
    Alo123 Member Posts: 308
    edited April 2009

    I saw a freinds DIEP....and yes....they look exactly like regular breats!  I was amazed!!!!  I have expanders in right now....and the look like half coconuts in my chest!  I'm not complianing at all!! In clothes you can't tell.  After the exchange I suppose I will look like a woman with implants....but I'm happy to say that the scars are very thin.....so much better than what I thought the mastectomy was going to be!!

    My onc, my surgical onc, and my PS have all seen them....and of course I have shown my girlfriends.  My girlfriends we curious and I thought it was important to share....I know I had never seen this before....

  • jillyG
    jillyG Member Posts: 401
    edited April 2009

    Lisa, that's great that you get compliments on your reconstruction.  I have one boob so I am totally down about my appearance.  I don't meet with the plastic surgeon until November!  He's the best in Calgary so I am willing to wait.  So, sometime after that I will be getting the other breast removed (skin-sparing prophylactic mastectomy) and the reconstruction on both at the same procedure.  I am getting implants, but I don't know anything yet, maybe expanders first, who knows.  I just can't wait to have my hair and boobies back, or at least 2 lumps on my chest that look like boobies! lol. 

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    Alo - too funny.  my girlfriends wanted to feel my lump (after diagnosis but before surgery). i obliged....so they know what to look for!  same with my diep....i've shared all along.   better to have others "in the know".  it helps all of us!

    JillyG - I didn't realize that you had to wait for reconstruction....but it sounds like it will be worth it!  I'm with you....can't wait to have it "all" back....completed boobs, hair, etc.!

  • lisalisa
    lisalisa Member Posts: 824
    edited April 2009

    so....i think i should have a nursing degree by now LOL!  i have had to empty drains after surgery, pack surgical wounds and now.....do a stool sample at home.  omg.   gross.  i had to put it in little containers, etc.

    seriously, i hate this cr@p.  pun intended LOL!

    i've had the runs ALOT since chemo #5.  never before.  we thought it was the chemo catching up to me (you know, that word cumulative).  anyway, i'm on day 14 and still having the runs.  so, the sample is at the lab and will take a few days to culture. 

    please don't let it be something that delays chemo.  i want this done.  my LAST chemo is supposed to be a week from today on 4/14.

  • kt57
    kt57 Member Posts: 425
    edited April 2009

    lisalisa:  You would make a wonderful nurse - with your wonderful attitude and positive spirit!  the culture might lead to antibiotics, but if your counts are good, I can't see why it would delay chemo.  

    Been doodling again -  6 items and joyfully crossing out 5 -- one more to go for me too......next Thursday.    Just have to rid myself of this cold I got -- thought it was the usual cytoxan sinus crud, but it's more than that.   Had hoped to avoid getting sick - guess if it had to be, am glad it happened during a "good" (low SE) round.    Am sooooooo looking forward to this phase being over.     Then on to rads---- 

    "cumulative" -- don't ya just hate that word?   Right up there with "doable".  

    Hang in there Jewels --- we'll all get there... back to a "normal" life.  

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