Starting chemo Sept 05

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  • AussieMum
    AussieMum Member Posts: 124
    edited October 2005
    Sandra,
    I bet you look FANTASTIC!
    No pirate or gypsy gags for you.
  • AussieMum
    AussieMum Member Posts: 124
    edited October 2005

    Well, I've got too much time on my hands and I talk too much. Verbal diarrohea. Think I'll stop for a while.

  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    What would you gals do here?

    I demanded kaiser do an MRI on my right breast, the good one. They found two little Adenomas in it, around 5 or 6 MM each. They say wait 6 months and look at em again.

    But what the *** am i going thru all this chemo for losing my hair, etc and only to find out possibly in 6 months these spots are cancer too?

    Oh man, they did not want to do the MRI and it will be hard tryin to push them to biopsy the spots but should i?

    i am not happy. but like you all i never want to go thru chemo again. the worst scenereo is if they find later the spots are cancer then what the heck i have to have another lumpectompy, node biopsy in right breast and chemo again???

    oh wow i dont know what to do, the ONC on call says wait 6 mos and that MRI technology on the breast is "so new".
  • prayer
    prayer Member Posts: 77
    edited October 2005
    Bubbles remember that MRI although terriffic have a lot of false positives. I had two different MRI's and each of them said I had a huge tumor. One said 6cm and the other 8cm. When it was all said and done I had 4 cm or DCIS and a 7mm invasive tumor. That is a far cry from their 6 and 8. I know it is really hard to do but try not to stress. Finish your chemo and then revisit it then. I personally chose to do a bilateral because I did not want to worry but that is not the best option for everyone. Try to relax. Biopsing right now is not a good idea anyway due to infection...well at least I would think. One step at a time sweetie.
    Hugs,
    Penny
  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    Good point Prayer! I talked to my husband and he said if any of them were cancer the chemo would shrink them and after 6 months they could tell there was a size difference. If they were like normal breast tissue, then they would remain the same.

    If I had a full body MRI can you imagine just how many areas would look strange? ya might need 40 biopsies or something!
  • AussieMum
    AussieMum Member Posts: 124
    edited October 2005
    Bubbles,
    sounds like a clear thinking logical man you have there. Hold on to him!
    Please try not to fret, just concentrate on getting over the current hurdle.
  • prayer
    prayer Member Posts: 77
    edited October 2005
    Bubbles I forgot about this until you mentioned the full body MRI. My brother had a full body MRI for a car accident and they found 3 different tumors. Told him he had kidney cancer, MS and that his liver had scirosis (he doesn't drink). Said he had to wait 8 months before they would do another one and that mean while he had to be on Atkins. Guess what? None of it was true...see alot of false positives. You will be ok.
    Penny
  • jlpd
    jlpd Member Posts: 54
    edited October 2005
    Aussie, yes, I'm still teaching. I schedule my chemo in the afternoon after classes, and then take the next day or two off. Fortunately, my next session falls during our fall break (no classes)...my only concern is that last time day six was the worst...I thought I could make it to class, but couldn't even leave the house...and it will fall on a Monday this time. I actually took a pillow to work so I could lay my head down and take a little snooze between classes...no, I didn't feel very well the first week back to class, but it got better each day. Hope my next session goes as well!!

    Well, here I am at day 14 after my first chemo...I go every three weeks...and I decided that since my hair will fall out that I should have it cut. So last night I went and had it cut SHORT...I've NEVER worn short hair, always shoulder length or longer...what a change!!! Actually, I like it and it is cut a lot like the wig I bought (the wig convinced me that I could actually wear long hair!)...BUT...I thought most of you already had signs your hair was falling out by this time in your treatment...mine hasn't even started...very firmly attached...am I going to be lucky or is it just a matter of time??? Well, need to run...hope you all are doing well! Janet
  • Calico
    Calico Member Posts: 1,108
    edited October 2005
    Hi all,

    I am half way in between chemo 1 and 2 and finally feel like I can be on the computer for a few....
    Geez, the meds make me sea sick scrolling up and down...

    I have almost no pain with the neulasta, was wondering if they gave me saline injection instead

    What are you getting for the red blood count? They asked me if I want a medication that's good every two weeks, it's called Aranesp (darbepoetin alfa), anybody taking that? good or bad?....

    I will ask for stronger anti nausea meds next chemo, they gave me decadron iv and aloxi (last 5 days supposedly, but didn't help much on day one and two...

    What is the strongest stuff around? (They gave me Kytril for after the aloxi wear of, can't say it helped much...

    doing much better after one week and eat all day, must be hardy like chinese food or something good like that...just like morning sickness...I hope I won't be rolling around the block soon....


    Going for PET scan tomorrow to check a spot on my lung...needless to say...I am scared!!!

    God Bless
  • jlpd
    jlpd Member Posts: 54
    edited October 2005

    Calico...I was given Emend...take one an hour before infusion and one each day for the next two days...it must have helped, but it is expensive, even with insurance (50 for 3 pills!). I also had phenergan every 4 - 6 hours, and avitan every 6 - 8 hours, along with decadron for three days (two pills twice a day)...felt like a hypocondriac taking all those pills, but my nausea was minimal...although I was very constipated...and I did have stomach issues (which were remedied by eating small amounts every couple of hours) for the next week. Hope your scan shows it's nothing on your lung! Janet

  • Calico
    Calico Member Posts: 1,108
    edited October 2005
    Janet,
    I forgot, I had Emend too and Ativan (generic). Ativan makes me to woozy, I feel "drunk" all the time lol....

    Maybe the Phenergan would be good, I will ask.

    As for constipation, I took Colace every day and tried to walk, seemed to help...I am okay midway trough but will start colace again a day before my next chemo.

    God Bless
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Back from my chemo treatment and once again, high on decadron. [We know that means I will be typing way too much in the next few days!]

    They reinstated the original Decadron pre-drip, and then slowed everything down. Since I don't have a port, they are accessing the back of my hand. With today's location, I felt that saline drip hard! Judy, my nurse, slowed it down, and everything else went at that same slow pace.

    Last night I got sick, but not chemo/cancer related. Something just didn't make my stomach happy, and my entire abdomen and livers just hurt ALOT. So in spite of the fact that I went to bed earlier than usual, I really didn't get much sleep. And because my stomach was distended I was not able to drink as much water as I would have liked.

    To compensate for that, I was given the full saline drip. During the infusions, I was able to get to down almost 2 litres of water, so I am on my way back.

    On the way home, I bought chicken since I have a craving for chicken pot pie, along with carrots and peas. My husband held onto my arm... he says I weave like a drunk on the decadron!

    I am now sitting here with a fresh peach smoothie and a piece of toast. Let the two-hour snacks begin!

    *susan*
    a decadron inspired posting
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Janet,

    The hair timing is not an exact science. And to be honest, I don't know if the dose dense and standard dose actually uses the same amount of the drugs. Somewhere I have my formula written down, but trust me, today is not the day to find such a thing!

    But, you have your wig. What is the worst thing that can happen? You never need it! [But that would be rather wishful thinking, I believe.]

    It is very impressive that you are able to keep teaching. Teaching is about the most energy intensive job I have ever had. Contratulations.

    *susan*
    a decadron inspired posting
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Barb,

    Your husband is sensible. Hard not to worry, but right now, get through the chemo. Then deal with 'other' stuff.... we all have so much on our plates right now!

    *susan*
    a decadron inspired posting
  • sholroyd
    sholroyd Member Posts: 288
    edited October 2005
    Oh so many of you have other issues to worry about – my best thoughts are flying out to you.

    Can you please tell me what neulasta and Decadron is please?

    I am doing OK following my 2nd treatment and no sickness thankfully. I had steroids before the Epirubucin but as I am so concerned about my weight going back on, and I think I have already put loads on, my onc said to try and leave off the steroid tablets they sent me home with – so far so good. Story is I have lost 4 stone 9 lbs 2 years ago and had managed to keep it stable.

    Speak soon – back to resting again.

    Sandra from the UK
  • Calico
    Calico Member Posts: 1,108
    edited October 2005
    Sandra,
    Neulasta is a medication that you get when you take dose dense chemo. It boosts your white blood count, which helps you ward off infection.

    Decadron is a steroid which keeps nausea at bay. You can retain water with it (I did the first week but managed to get rid of it so far)....

    God Bless
  • jlpd
    jlpd Member Posts: 54
    edited October 2005
    Well...here I was feeling so good. Went to get my bloodwork done...and at two weeks out from my treatment the nurse called me as soon as I got home...wanted to know if I'd been running a fever and, by the way, stay out of crowds (I work at a college, for pete's sake!)...looks as though my white blood count is too low...should be between 4,800 and 10,800 and mine is 500. oops. okay, so now what? I called the nurse back later and left a message. SHe said that if I start to run a fever they will want to put me on an antibiotic immediately. Okay. No fever...but I called her back and left a message, wondering if they should recheck my blood in a couple of days....most of you are getting the shots to boost your WBC...but you're also on dose dense...so what do I do. Is there any way to naturally boost your WBC? The only sick feeling I have is that I'm a little more tired today (but today is also my long day) and I have a little congestion in my chest with some sinus pressure...more like seasonal allergies versus a cold. I would love some advice...thanks guys! Janet

    Oh, Sandra,...decadron is a steriod and I believe neulasta is the shot they get to boost white blood counts...
  • Calico
    Calico Member Posts: 1,108
    edited October 2005
    jlpd,

    maybe you could benefit from Neulasta too, it might not just be for dose dense?? just ask, better to get a boost than an infection.
    I walk everyday and my white blood count was normal one week after neulasta even though they said I could expect a count of 800 or so as well.

    Just try to be carefull and wash hands often I admire everybody that can work, I am so out of it.....

    God Bless
  • jlpd
    jlpd Member Posts: 54
    edited October 2005

    Calico..quite frankly, I think if I were doing dose dense, I wouldn't be working...but I should (notice I said should) have two decent weeks out of three...plus I need the paycheck!...I do a lot of physical activity, now that I'm just about recovered from my mastectomy. I have a small farm with six horses that I care for (and actually got to do some riding this weekend--just a little!)...so I'm walking between the barn and house, doing chores, etc....the one thing I know I do need more of is sleep...but I'm usually too wound up to fall right asleep and wake up several times during the night. I've taken some benedryl to help with my sinuses tonight, so hopeful I can go to bed early tonight...any other suggestions or ideas? Thanks. Janet

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Low white blood cell counts are clearly a concern. No crowds, no raw food, pristine bathrooms, and the constant fear of infection [even from your own body!] The nurse didn't suggest neuprogen?

    Neuprogen is a daily injection given until the white blood cells are back into their normal range. Nuelasta is a one time per round inject which stimulates the white blood cells over a longer period of time. My sister was part of the first-ever white blood growth factor protocol for cancer back in 1991, so I know more about this subject than I ever wanted to.

    Chemo targets fast growing cells; while neuprogen and neualsta move into the bone marrow and stimulate the white blood cells to duplicate quickly. [That is why some folks get bone pain.]

    I am unable to think of anything that will stimulate the white blood cells besides these injections. As a one-every-three week patient, Neulasta is off the table, but neuprogen should be available to you.

    The fatigue can be totally related to your white blood cell count, or to your heavier teaching schedule. This is probably way more information given to you with far too many words, but I do hope that it is helpful.

    *susan*
    a decadron inspired posting
  • leannem
    leannem Member Posts: 137
    edited October 2005
    Hi all

    I have only found these boards last night and have already found a fountain of information so thank you!

    I am 28yrs sons 3yrs and 4months. DX 19 Aug 05 of multi focal Grade 2 invasive ductal carcinoma. 1/8 nodes +. Lumpectomy with wide excision- margins clear (yay!). Am ER+ PR- HER2 +++. My TX is AC followed by Taxol + Herceptin followed by endocrine therapy and 6wks daily radiation.

    Here in Australia Herceptin in at the patients own cost of $53 000 so my partner and I are doing some heavy duty fundrasing which can be seen tonight on tv over here or on www.nine.com.au/aca Please tune in!!

    I am having a nulaste injection today which I am a bit worried about these aches and pains. How long do they stick around for?

    I am pretty nauseas today but possibly not as bad as round 1. However it is still pretty early on in the day.... I am drinking an electrolyte drink- 1 tsp celtic salt, 1 tsp sugar plus lemon juice in 2ltrs water. Anything else??

    Hope to hear from you all soon
    xoxoox
  • monkey9cats
    monkey9cats Member Posts: 47
    edited October 2005
    Good morning everyone! Well in a couple hours I'll be off to my treatment #2. Hopefully they will be able to do it & my blood cell count will be OK with my tooth issue! I woke up with a horrible headache this morning. Probably stress related because of my treatment today. I just took some advil but I took my temperature 1st to make sure it was OK & it was. We're suppose to have bad weather today because of one of those tropical waves out there. My luck they'll loose power at the treatment center LOL.

    Not too sure what the deal is with my hair. It kinda quit falling out yesterday. My daughter & friend call me "patches"!!! Boy it's amazing how white your head is without hair! Wonder if there is anything you can put on it to make it "match" the rest of your body. I normally go bass fishing and have always had a nice tan. I haven't been in months because of all the surgeries etc which is probably a good thing otherwise my head would really look like a "cue ball"!!!!

    Well ladies take care & I'll let you know how it goes today. I've got my "plan of attack" ready for the side effects!!!

    Cheryl
  • AussieMum
    AussieMum Member Posts: 124
    edited October 2005
    Hi Leann.

    Tuned in to the ACA story with interest. You headlined!

    Hope the fundraising goes well.
    Let us know how you fare.
  • tinkermax
    tinkermax Member Posts: 269
    edited October 2005
    Hi Cheryl

    Hope all goes well for you today with treatment 2.
    I had my second chemo on Tuesday... so far so good!

    Welcome Leannem
    I'm glad you have found this wonderful website.
    It has helped me so much, and the ladies in this thread are great for advice,and humour...we all need to remember to smile sometimes.

    Have a good day everyone

    Maxine
  • hopeful1
    hopeful1 Member Posts: 54
    edited October 2005
    Had round 3 of dose dense chemo yesterday and I'm doing fine so far. Back at work today! I will be working a short day and getting my Neulasta shot early this afternoon. I have not had any effects from the first 2 - I'm hoping this one is the same.

    Janet, I had my hair buzzed after treatment #2 becasue it was starting to come out in clumps. Like Susan stated - it has a different pattern for everyone. I have some pathces that are gone completely, but the other areas are growing. I may lose that too - but for now it's hanging in there. So are my lashes and brows. My onc. told me that dose dense is the same amount of drugs - the dense only refers to the timing.

    Cheryl - my second treatment was a little rougher than the first - but I think is was because I got lazy. I didn''t keep up on 2 hour feeding schedule and didn't drink the fluids I should have. They gave me Kytril last time, and it didn't do much for me. I also have Copmazine - but that makes me so tired that I didn't take it when I should have. I was given Zofran this time and I will take it when I need it! Best of luck to you.

    AussieMum - there is no such thing as misappropriated prayers! Thank you for the thoughts.

    Calico - the Kytril didn't work for me either. I'm trying Zofran this time. I'll let you know how that works. Best of luck to you on your PET scan. Warm thoughts and prayers to you.

    Susan - good to see you are doing well after round #3! Keep up the Decodron inspired postings - I enjoy them!
  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    Calico
    On my second treatment, my doc gave me Zophran, (melts in your mouth and is easier on my stomach) for nausea. In addition I take Dexamathosone (Spelling) 2x in the morining for 3 days. I start taking the meds the day after my treatment and they really help. But I found the biggest help is forcing myself to eat every 2 hours especially if I am nauseous. Whatever you can tolerate and it doesn't have to be a big amount. Try it.
    As for the pet scan scare. I think many of us are at the doubting part of our treatments. Faith is the answer. I just trust God is taking care of it, the doctors really are trying to save my life, and my body is going to cooperate. The tests are the worse. It is like instead of concentrating on how much better you are getting, every thing points to how much worse it can get. Don't let it rob you of today. Try not to spend too much time focused on the fear but what you are doing or can do Now. I am lucky ot have been through this before because I can remember how much time I wasted worrying when I could have been doing other things.
  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    Janet,
    From past experience and nurse info, When you are most tired your white count is low. At that time you should avoid public places and school children,(sorry). You are most susceptible to infection at that time. I thought my white count would go down right after my treatment, but it actually was dropping right before my treatments. Then I couldn't get one. You should see if your doc can get you something to boost them but I don't think there is anything you can do on your own. Rest is the best medicine when you feel that way.
  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    Hi leann,
    Welcome to the boards. I hear great things about Herceptin. Have you tried contacting the pharmaceutical company that produces Herceptin and see if they can help you with the price? They do that sometimes. It is always worth a try.
    Good luck with the fundraiser.
  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    I was watching Tv game shows the other during my rest period. Why don't they have 'chemo week'during breastcancer awareness month.

    Jeopardy (I'd never get on this show in the first place)
    Host - The answer is IDC.
    Norine rings the buzzer. "What is . . . ". "I'm sorry I forgot what I was going to say."

    Wheel of fortune, (an appropriate show for all of us)
    Host- Spin the wheel Norine
    Norine - Huh?
    Host- Spin the wheel Norine
    Norine - Huh? I can't hear you my sinuses are messed up and my ears are clogged.
    Norine finally spins the wheel.
    Host for $300 name a letter.
    Norine - Squinting at wheel. "Could you not make it spin like that I think I am going to be sick."

    Yep I think the chemo has damaged the serious side of my brain.
  • Calico
    Calico Member Posts: 1,108
    edited October 2005
    lol, Norine,

    Thanks for making me laugh!

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