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Chemo in Sept 08

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  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    Genia, given you're having a reaction already, do you think you should try and switch to one of the other 2 AI's? Did they tell you how long to try it? 

  • Jane_M
    Jane_M Member Posts: 932
    edited November 2009

    If any of you are watching the national news...the Stissing Mountain School hostage situation is in the next town over from where I live.  There were cop cars flying all over this morning on my way to work and we have been watching this thing unfold all day.  We have friends who work in this school and friends whose kids go to this school....very scary stuff that you don't expect in your backyard.

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    I didn't know anything about it Jane.....will have to turn over to the news.

    I'm gonna give this med a little longer Beverly.  It's still not as bad as the Tamox....so far at least.  Some pain and depression.....but I'm not gonna blame the Aromasin at this point entirely!

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    I went in and had Zometa infusion today, and my 4 months check up or whatever it is. I guess I am NED as she didn't want to scope or scan me.

    She did say, when I complained about cognitive issues, that she thinks this could be the Tamoxifen. She talked about putting me on an AI. She said that generally, complaints are less and quality of life better with AI. So Genia, hang in there!!!!!!  We have to remember that with any new drug, it can take a few weeks to get adjusted.

    Spring.

    Jane, have not seen the news but it sounds terrible. :( 

  • bar62
    bar62 Member Posts: 221
    edited November 2009

    Howdy girls,

    I thought FV  had me good...I'm setting my cell alarm to rescue my food from spoiling.:lol:lol..I feel as if I've lost my mind...I've made friends with another member of our BC  board  on FB  friended her and invited her to cafe and FV. I hope she has time to come and play...she is a survivor too.

    Genia, I hope you  have the pattern of one of my friends who is now on Arimidex-. Her doctor told her to hang in there when she went  in to  ask her to change the medication and  it did get better.  She is retired and a lot older than everyone here but me but she is doing well 8 years out. Her doctor discharged her and told her not to worry anymore...good times for her and her family all round.

    Girl, I read about a principle being held hostage in upstate this morning and was upset without  knowing  it was in your neck of the woods. I'm glad it's over for everyone's sake.

    Girls, the train episode was great... for me only... I haven't felt useful in that way for a very long time. I thank God I could help.

    I'm having some kind of flare and will probably see my rheumy next Wednesday, next Monday if the pain chills and low grade temps continue. I was told by my Onc that they no longer worry about triggering Systemic Lupus  with Radiation. The only autoimmune illness that can't have radiation is Scleroderma... have skin Lupus already...so I hope they know what they're talking about because I trusted them and with my  interrupted chemotherapy I felt I had to.

    Having Mammo and Ultrasound tomorrow to make sure the radiation is what has changed the configuration of my boob...fingers xed:)

    I'm on Firefox and haven't added cut paste copy so excuse all everything wrong..:)

    silly browser who would think they can't add it...oh well.

    see you on the bright side...FB here we come..

    xoxo

    mina

  • Juli50
    Juli50 Member Posts: 652
    edited November 2009

    Jane - So scary! I hate watching the news sometimes... too much killing going on.

    Genia - maybe a reduced dose of Aromasin?

    Chris - what Lisa said...wherever you go, they are lucky to have you!

    Mina - Good luck tomorrow! crossing fingers for you!

    I saw my PCP today. My eyes are dripping. I look like I'm crying. I must have had a clogged duct yesterday because the left side of my face was in sooo much pain. He said I have an allergy problem and gave me some Claritin. He also doesn't want me to have another ct scan of my lungs, which my infectious disease doc wants, because each scan is 600 doses of radiation, and I've had enough scans this year.

    next week...neurologist, cardiologist and oncologist appts.

    hugs Kiss

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    I had a really sucky, cancer-ish day yesterday.

    4 month check up. It was one year ago yesterday my last chemo, and it was 8 months since my last Rads. My white and red count and still low, and my ONC is starting to be concerned. She said that if at 18 months they have not come up, I will need, (GET THIS) a "bone marrow biopsy" to see if I am getting leukemia!!! I can't stand this!!!  Please pray / send good thoughts for my white counts, especially, to rise!!!

    I also had the Zometa infusion, my second, this time in the chemo suite, and that was icky. Last time they did it where they give shots, but this time it was full immersion! blech.

    Also the onc was annoyed with DH and I for wanting her to do something she does not want to do.

    Just a bad, sucky, cancer-ish day.

    Spring. 

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Hugs Beverly.......no one told us THIS NEVER ENDS!!!!!   Even in remission.......it just keeps on giving!

    We will pray that all your counts come back to normal......for goodness sakes you've been through ENOUGH.

    Every month when I get my herceptin.......I'm in the same place I had chemo......and I know exactly how you felt.  Just brings back too many memories.

    If there is anything I can do......just name it......I'll do what I can.

  • Juli50
    Juli50 Member Posts: 652
    edited November 2009

    Spring - Did your onc suggest anything to get your counts up? That just sux. We've been tortured long enough and none of us deserve it to keep draggin' on...

    Genia - How many more Herceptins? Getting off that stuff will help you feel better, I'm sure. (It tried to kill me, so I know!)

     My eyes are not dripping today. yay for that! lol

    hugs Kiss

  • bettysgirl
    bettysgirl Member Posts: 645
    edited November 2009

    UGH sounds like it's time to bring the cabana boys back or all of us book a cruise to somewhere lovely!

    It has been raining here for two days and i am about ready to mildew- but hopefully it will let up soon.

    Jane- how scary to have something so big so close to home. I haven't seen news today at all so i hope all is well now.

    Spring- we will be praying for good counts to return to you.

    Mina- you have really got the green thumd now!!! Fun isn't it...we all need a fun distraction from time to time. I am glad to have finally figured out how to install flash on this old computer after we had to reformat the harddrive..glad to be farming again in full...

    Genia- HUGS to you. ALL these meds are a pain in the you-know what. Hang in there. Hopefully all will resove soon.

    I hope all of you have a great day today and that all things begin to look up for all of you.

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Juli...I think I have two more.  My next one is next week.  I will be glad for them to be over with.  As you can see...it's 3 in the morning and I'm still up.  Been up like this for the last two nights.  I don't understand it.

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    Girls, 

    I have done an analysis of my white and red counts over time (can you tell I am a data hound? lol)

    In looking at this, It is clear I was fine before FRIGGIN RADS zonkered my counts. Then I was coming back up, and whammo, I had that big surgery.

    I am NOT letting her go digging around in my bone marrow until I have had another year to recover. A year from my *next* surgery on Dec 1. Then we'll see. I think my poor body just needs time to recoup!!! I keep slamming it with something or another!!!

    Look at this below. DOn't you think this makes sense?? JANE??? You are a data/record keeping sort of gal. What say you on this ??

    Spring

    Normal RANGES:
    White - 4.0 - 10.5
    Red -    3.8 - 5.1

                                            White       Red
                                            ---------       -------  

    Aug 4 2008                        7.5           3.91            Date of first chemo

    CHEMO Aug-Nov 2008, 5 hour Surgery Dec 3 2008

    January 9 2009                   4.1           4.38            After chemo & surgery, before radiation

    RADS Jan-Feb 2009

    Jan 28 2009                       4.8            4.25            2 weeks into radiation

    Feb 27 2009                       3.1            3.94            Radiaion cmoplete

    July 2009                           2.8            3.8

    August 2009                      3.9            3.78

    SURGERY Sept 3 09, 11 hour surgery - Phase 1

    Oct 2009                           3.2             3.59

    November 2009                  3.2             3.55

    SURGERY Dec 1 09, 6 hour surgey - Phase 2

  • BrandonMom
    BrandonMom Member Posts: 209
    edited November 2009

    Spring, I think it makes perfect sense!  I'd wait too.

    Just as an FYI, a bone marrow biopsy isn't as intimidating as it sounds.  My son had many.  It is just a needle that goes into the back of the hip bone and extracts some of the marrow - looks like blood.  It isn't something I'd choose to do, but it was pretty quick.

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    Thanks Colleen, I hope I don't need to have it, but that doesn't sound as bad as I was imagining! 

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Beverly......it looks to me like all the treatments and surgeries have caused all the wacko counts.

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Have they mentioned giving you blood to see if the counts will come back up?

  • bar62
    bar62 Member Posts: 221
    edited November 2009

    Afternoon...good news yesterday pm ...My US  was clear which means most likely my   mammogram  will be OK too. She wants  me to see my surgeon for  another professional exam...I said I was satisfied with the tests results, but I think I will...maybe..

    Beverly,  I  understand the concern about your white blood cell count. I couldn't get chemo once because my white cells  count was 4.3. A bone marrow should help your  doc pinpoint what's happening and help her make an accurate diagnosis. {{{{{[Spring}}}}}

    Who knew? FB is connecting me with the Bahamian side of the family...( the Moncurs)  which means my heart and sounds like moncoeur...this is an unbelievable blessing from God for me.

    Cafe has gotten hold of me now...It slowed yesterday and FV stopped for a while . arrgh.

    back soon:)

    xoxo

    mina

  • BrandonMom
    BrandonMom Member Posts: 209
    edited November 2009

    Genia, without knowing why the counts are low, I would doubt they would give a transfusion. There are some conditions that can cause your counts to be low, and an transfusion would just make the condition worse.  They would probably want to do the bone marrow aspirate first just to make sure the problem is that they marrow is just low, and it isn't that something is happening to the cells once they hit the bloodstream.  A bone marrow aspirate is so quick to do, there would be no reason to not do it prior to considering a transfusion. 

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    I had 2 units of blood with my 11 hour surgery, I imagine I was dangerously low. I am now eating red meat once a week. I think my body just needs time. And I have another surgery Dec 1!! Maybe by next summer / fall... 

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    I thought you all might like to go here and sign up against the changes that are being proposed with mammography.

    http://community.breastcancer.org/forum/110/topic/744011?page=1 

  • Springtime
    Springtime Member Posts: 3,372
    edited November 2009

    Genia, how are you feeling, I was thinking about you recently. Have you had any "leveling off" of the SEs from the AI??

    I think Chris is off in Holland trying to get all her ducks in a row. Hi Chris, if you are out there!!! 

     I know many are upset about the mammogram news of last night. If you listen closely to Dr. Susan Love, I think what she is saying is that mammogram is not good enough for young women with dense breasts. This message was not totally clear, but this is what I heard, and what I believe. I feel totally betrayed by mammograms. I had them yearly for a long time, and had a 5CM+ tumor that was not detected, even by a diagnostic mammo (or an ultrasound!) where they were basically drilling down into the spot! For all women, younger and older, 20% of cancer is missed by mammograms. Isn't that totally sucky??? That is a friggin LOT OF WOMEN!!! For younger women with dense breasts, pre-menopause, the number must be much more, as this is a known issue with mammograms. Also, I personally think we need more focus on PREVENTION of BC rather than waiting to get it and detecting it (early, or not early, as in my case).

    Anyway, We do need SOMETHING, and it should be something better. So many young women are now getting BC before even 40! (before they would get mammo anyway!). This whole thing just makes me CRAZY.

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Good morning Beverly......I THINK I'm doin better on the Aromasin.  MUCH better than the Tamox.  I do seem to be feeling better anyway.  I  get tired easily, but that could be a number of things including lack of sleep....lol.  I don't get in bed very early....and then back up early.  I fall asleep throughout the day. 

    I.....like you had mammograms every year and my tumor was missed by mammograms and ultrasounds.  BUT.......there are many that are helped by them.  I don't know what the answer is, but something needs to be done.

  • Juli50
    Juli50 Member Posts: 652
    edited November 2009

    Did they say they don't recommend self exams too? I found my own friggin' lump!

    Genia - So glad you are feeling better!

    hugs Kiss

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Yes.....that's what they said Juli.  I guess our world is overpopluated and they need to get rid of some women.......that's the only logical thing I can think of!  It's crazy........

  • Genia
    Genia Member Posts: 1,055
    edited November 2009

    Yes.....that's what they said Juli.  I guess our world is overpopluated and they need to get rid of some women.......that's the only logical thing I can think of!  It's crazy........

  • Jane_M
    Jane_M Member Posts: 932
    edited November 2009

    Tooting my own horn... 

    I just had an essay published in a magazine local to my community - you might remember the editor, Felicia, from BCO.org a while ago.

    http://www.tricountywoman.com/readerview.html

  • Juli50
    Juli50 Member Posts: 652
    edited November 2009

    Jane - Congrats! You are a fabulous writer! just wish you didn't have to get cancer to have an article published. :(

    hugs Kiss

  • bettysgirl
    bettysgirl Member Posts: 645
    edited November 2009

    Jane- ongratulations on the article. Proud of you!!!

    I'm an another that mams didn't find the lump- I did- then when the mam did pick it up it picked it up as 1 cm- and it was 5-1/2- i know it helps some women find theirs early so i don't know what the answer is either. I know that it said wait to 50 unless you were in a high risk group- who's going to determine who's high risk?? I think this is all just the beginning of a lot of changes in how health care will be in the future. Some of us will be expendable..

    Juli- good to hear from you- hope you are doing well

    Genia- I hope the SE's will taper off and you will be feeling good soon.

    Spring- we are going to keep thinking higher counts thoughts and send them your way

    Mina- you are a love- thanks for all your hugs, smiles and good wishes on FB

  • BrandonMom
    BrandonMom Member Posts: 209
    edited November 2009

    I'm feeling so sad..  One of the women in my rads group is now on hospice.  At that time, all looked so good.  I can't believe how fast it all happened.

  • BrandonMom
    BrandonMom Member Posts: 209
    edited November 2009

    I'm feeling so sad..  One of the women in my rads group is now on hospice.  At that time, all looked so good.  I can't believe how fast it all happened.

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