Really, really scared tonight

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HeatherBLocklear
HeatherBLocklear Member Posts: 1,370
Really, really scared tonight

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Hi all,

    I started Taxotere and Avastin 10 days ago. My oncologist predicted I'd see shrinkage of the tumor already with the first treatment. Yesterday I saw the BC; he doesn't think there's any difference. I'm on a three-week regimen; now I'm scared silly the treatment isn't working, and that in the meanwhile the tumor is seeding everywhere.

    Can anyone reassure me that it can sometimes take longer before initial results are seen? What about spread while on chemo that's not the most effective for a tumor's gene expression? I am such an innocent in these things; I've been healthy all my life until the ovarian scare two years ago (but it was a scare only!), and now this.

    Annie

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited March 2008

    I wish I knew more to tell you -- this is an area that is new to me.  Just about the only thing I can tell you is that in a 2002 paper reporting that docetaxel (Taxotere) was significantly more effective than an older chemo in reducing tumor size before surgery, the Methods says that they measured tumor size with calipers only AT BASELINE and then after the LAST of four 21-day treatment cycles. (http://jco.ascopubs.org/cgi/content/abstract/20/6/1456)

    I hope someone with personal experience will have more to say.

    How did BC assess size for comparison?  With any kind of instrument, or just by feel?  I don't know how these things are measured (above paper said calipers, while a 2000 European paper says "by helical CT scan" -- but I don't know if that's still too new, or standard practice, or already outmoded) but it seems to me it ought to be with some kind of instrument.

    Hugs, and I hope you get a chance to talk to doctors soon,

    Ann

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Annie

    Sometimes it does happen that one chemo doesn't work for a particular person.  I'm not sure you would see a difference in just 10 days though.  Hopefully your oncologist is keeping watch and I would think they are probably doing tumor markers each visit for you as well.  

    If this chemo doesn't work for you, then there are alot of others to try.  Maybe the sister drug Taxol would work better for you.

    But I really think it is too early.  The conventional wisdom is that day 11 from the day of chemo is when you will see white counts start to drop.  Day 11 thru 17 were the worst days/week for me side effect-wise.  That is when mucositis set in and my nose would drip and sinuses bleed.  These days will be the time when you will be most vulnerable to infection so stay out of crowds and away from people who are sick.

    Everyone is unique in how they respond to chemo. 

  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited March 2008

    I wish I knew what to tell you too. I don't though other than...try not to panic 'til you know for sure it's time to panic. (I know...yea, right...)

    Hang in there girl!

    Hugs, Traci

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited March 2008

    Hi HeatherBlocklear,

    My first three treatments were AC.  We did an MRI at nine weeks and my tumor had not gotten smaller.  My oncologist changed my cocktail to Taxotere and Carboplatin.  I did 6 rounds of this combination and the tumor did get smaller.  This was before I had surgery.  I'm glad my oncologist was on top of her research because the carboplatin seemed to do the trick. 

    My guess is the cocktail you are taking is catching any stray cells.  Your doctor sounds like he/she is vigilant about watching you.  You may have your cocktail changed.

    Warmly,

    Sadie

  • PineHouse
    PineHouse Member Posts: 416
    edited March 2008

    Hi Annie,

    I think any oncologist would agree that 10 days is really too early to determine whether a regimen works or not.  Remember, 1cm tumor contains 10,000,000,000 cancer cells.  So if you just killed 1,000,000 cells within the last week and a half, you may not see any shrinkage at all on that 1cm.  You need some time to give the drug a chance to kill that many little guys.

    Another thing that may encourage you to stay "patient":  My oncologist once told me that she has seen cases of patients where their tumors are dying "inside out" instead of shrinking from outside in.  A CT scan sometimes can't tell if the treatment is working because the tumor's diameter is not smaller, but in reality the tumor just becomes less dense.  These kind of cases are usually seen on patients taking the newer biological therapies such as yourself taking Avastin.

    Best wishes for you.

  • jonimb
    jonimb Member Posts: 900
    edited March 2008

    Heather,

    My chemo never shrunk my liver mets at all until around the 5th or 6th treatment.  I had 3 MRI's during my 6 rounds of chemo, and it wasn't until the last MRI that it showed shrinkage.

    Hugs to you....think positive thoughts...the chemo will work....Joni

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Thank you, thank you, thank you to all of you! Ann, my sweet good friend, thank you for the link. I'm sorry for the hysterics; I think I've blown my nervous system with all the crap that went before.

    Still, DH wants me to get an appointment with the oncologist for early next week to talk to him again and have him evaluate the mass (measured with calipers). I need to ask how soon I can expect change, at what point new treatments will be considered if this one proves not to work well enough, and whether or not the cancer is likely to spread in the meanwhile.

    I am so incredibly lucky that even though my mass is 6 cm+ and triple negative, I have no metastases. I want so badly to keep things that way. What a nightmare horse we're all riding. I can hardly believe that it does get better as time goes by. I think it will get better for me if I have some sign that things are working (the BS didn't even seem to think the axillary node had shrunk, and I had pinned so much hope and optimism on my belief that it had).

    Hope -- thank you for the eleventh day info. That was the first time I'd heard that. I thought the strongest effects were in the days immediately following treatment, those when one feels so weak and tired. I did start having the nose, mouth, and sinus problems about three days ago, but today I seem slightly better in that department...

    Pine, Jo, Traci, and Sadie-Rose, thank you from the bottom of my heart. Thanks to everyone.

    Hugs to all,

    Annie

  • sueps
    sueps Member Posts: 2,266
    edited March 2008

    Hi Anne xxx

    My dad spoke to his oncologist who said chemo can take up to 3 or 4 sessions to work.....but this was on his blood cancer....

    I hope your fears have calmed...and your onc reassures you xxx

    Much Love xxx

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Anne

    This is called the 'nadir' and here is more information on this low point in chemotherapy.

    Nadir

    What Is Nadir?

    When discussing chemotherapy side effects often you will hear the word nadir, mainly in reference to the blood counts, particularly white blood cell count and platelet count.  Nadir basically means low point, however further explanation may clarify this term in connection with chemotherapy treatment.

    Nadir Affects White and Red Blood Cell Counts as well as Platelet Count.

    When chemotherapy is given it not only affects the rapidly dividing cancer cells but it also affects some of the normal cells of the body.  These effects particularly occur on normal cells that divide rapidly such as, the hair, the lining of the mouth, the cells lining the intestinal tract and the blood cells (white and red blood cells as well as platelets). 

    In the bone marrow, the spongy inner core of the larger bones in the body is where blood cells are made.  There are very immature cells called stem cells, from which the various types of blood cells develop.  These stem cells do not reproduce quickly and are less likely to be affected by chemotherapy.  As cells are maturing there are certain phases in which they divide faster.  It is during these times that the cells are most sensitive to chemotherapy.  The more mature cells can continue to become fully mature cells for several days after chemotherapy is given.  When these cells live out their life span, the circulating supply is depleted and the blood counts fall to a low point, the nadir.

    Emerging from the Nadir and Returning to Normal  

    The blood counts will return to normal within three to four weeks, after the body's feedback system has told the stem cells in the bone marrow to increase production and begin making new cells.   If chemotherapy is given at the time that the stem cells in the bone marrow are increasing their production this could cause permanent bone marrow damage.  The timing of chemotherapy cycles takes this process into account.  For example some chemotherapy drugs are given on day 1 and day 8 of a 28-day cycle.  The second dose of chemotherapy, one week after the first, is tolerated because the stem cells have not yet increased their production (they are still at the nadir).  They have not increased their production because the second treatment is given before the count of the circulating blood has reached its nadir.

    The nadir time is usually about 10 days after treatment, although this may vary depending on the drugs given.  The concern during the nadir time is that the body's first line of defense against infection, white blood cells (WBC) and the platelets, which help to clot the blood, are low leaving a person more susceptible to infection and bleeding.  The next dose of chemotherapy is given only after a person's blood counts have left the nadir and recovered to a safe level.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Dear Hope,

    I am grateful for the detailed explanation above. Being an academic, I always want to be aware of facts behind phenomena. I wonder why this information isn't given routinely. It seems to me that patients need to know when they're most vulnerable to infection, and also at what phase of treatment their chemotherapy drugs are likely to be the most effective. Unfortunately, medical doctors seem to be among the worst communicators in the world. I've long believed psychology and communication classes should be mandatory for medical students, but find I have minimal influence on the curriculum committees at most medical schools, LOL.

    I've made an appointment to see my oncologist on Monday afternoon. I have a list of questions which include what plan B is (and he damned well better have thought of one!), if cancer is likely to spread during ineffectual chemo (I'm sure it can), and how soon tangible improvement can be expected.

    Thanks to all yet again. I'm still worried, but a bit less than last night.

    Hugs,

    Annie

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Anne

    You should be set up to either get neulasta to help stabilize your white counts or neuprogen.  I got neuprogen shots on day 11 and 12 of my chemo cycle with FAC but the new generation of this is neulasta and from what I understand is given once the day after the treatment.  You will experience bone pain from neulasta and neuprogen as it stimulates your bone marrow to overproduce white cells.

    I would expect an experienced oncologist to have many backup plans for their patients.  And remember, you can always get a second opinion if you are unsure.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Hi Hope,

    Thanks again. They do give me Neulasta the day after chemo, and it does indeed give bone and join pain. But I was expecting it, so took Advil and carried on. Just a bit harder to do my 40 mins on the treadmill.

    I'm on a clinical trial for which my oncologist is an advocate, so I'm not sure he has a Plan B. Maybe talking to him about that will make him start thinking in that direction.

    Thanks again and hugs,

    Annie

  • jdash
    jdash Member Posts: 754
    edited March 2008

    hi annie

    trip neg here  i also had a tumor that was the size of yours and thankfully with no mets  i did chemo first then had surgery dbl mast and reconstruction  when they did the surgery they did not find ANY CANCER left in my breast or lymph nodes ! trip neg reacts well to chemo  hang in there and speak to your doctor so you feel better about the plan he has in place  its been 2 years for me and i just had a bone scan and MRI and all clear !! Laughing

    feel free to PM me and ask me anything you want

    love from a fellow TN

  • ElaineP
    ElaineP Member Posts: 2
    edited March 2008

    My daughter just completed her third AC treatment and at the appt her tumor was examined and it was very difficult to find!  Not so a week or two ago so it definitely can happen a little later in the process.  It took four weeks for her to see some shrinkage.  Good news for us and I'm sure you have good news soon.  My thoughts are with you.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Thanks to all who responded. This is really what's so wonderful about this board and all the regulars who watch out for us relative newcomers -- when we get desperate or terribly frightened, someone always pops up to reassure, soothe, and give good advice.

    I have the second session next Wednesday, and have high hopes to see some real change after that. What a hard thing this is to deal with!

    Love to all,

    Annie

    PS: JDash, will PM you. Thanks for offering.

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