Just had to say something.....

kathydaly
kathydaly Member Posts: 81
edited March 2014 in Breast Cancer #1
i am so vproud of all of u ladies!! and so impressed i've been reading these messages for a few days, and responded to one, but in reading it today, i feel it was too negative. and i dont want to be neg., but i did want to be truthful.

i had 1st bc 15 yrs ago, maestectomy,2 nodes out of 21 pos. and ERP, did the adriomysin, CMF, then 24 rounds of radiation, and tamoxifen for 5yrs.

LoVonna--radiation and 1st appt was the worst, as some1 said, had to be positioned in plaster of paris form they made of me, that was v dehumanizing, but it saved me. i was exhausted after radiation immediately, and at that point ladies from church drove me to sloan-kettering every day and another one watched my then 1 1/2 yr old and 6 yr old and 9 1/2 yr old if appt's ran late. that exhaustion was the worst, but i never burned, at all, and very fair skinned irish here, lol.

did great , til '04 when i got a new bc in other breast, found on MRI, so v early and had no nodes, had a prophylactic maestectomy, because i thought i could control it better that way and have more peace of mind, but i was wrong, nasty, insidious disease that it is. put me on arimidex then, and i was on it for 8 mos. and thought i was losing my mind, finally discovered all my pain and endless other side effects were from the arimidex. so i had to stop it, couldnt live like that. they aloso agreed w/me to stop it. i waited 5 to 6 mos for those side effects to be gone and i was supposed to start aromasin but was so fearful of same side effects coming back i didn't. now in july we found bc in 2 nodes, sub-pectoral from bc 15 yrs ago. shock, shock, shock. had surgery on 8/25, and have started aromasin this past week, and hope i can tolerate it. i am her-2, so if this is intolerable to me, only femara left. although oncologist said we would go to herceptin if these 2 didnt work for me.

i feel like ive been such a scardy-cat lately about the aromasin after reading what every one else is going through here. planning for final days, having reoccurances not as good as mine or metestatic cancers occuring. i want to dance at my children's weddings (now 24, 21, and 16), and hold granchildren. i feel as if i've lost a lot of the old courage i had, but i will work harder at gathering it up again. i am still so fatigued from this last surgery, sleeping so late in the day, going to bed early, last fri., nearly fell asleep 3x's on my way driving home from memorial sloan-kettering. i called our church tonight to see if i can get help for 2 days of appt's next week and they're working on it. yeahh!!!

i am grateful for so many things already i cant list them all and my faith in God has never floundered, nor will it.

i just have to get rid of this fear of the aromacin and all the side effects returning, and i am sooooo very angry at this disease.

Comments

  • Susan956
    Susan956 Member Posts: 510
    #2
    Kathy,
    This is the place to post both positive and negative messages... We all do understand the different emotions that the beast does bring out in us. I know that I am taking Armidex and yes it for me has many side effects but it is still tolerable. I hope that you will manage to beat the beast yet again. I am lucky had only been faced it its ugly face once.... and I hope I will have the courage to face it again and again if it rears it's ugly head again. Know that there are many that routinely are on this board that have faced multiple cancers.... It can be done. Know that our thoughts and prayers are with you as you navigate your way through these very rough waters... Your faith will help carry you through...

    Take Care... God Bless....

    Susan
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    Oh, kathy....I have yet to test the sides of arimidex. After the treatments for my two cancers (rectal, stage III, breast, stage IIB), I ended up osteoporotic. So, my onc decided on Tamoxifen for the first year to build my bones. Could you do this route? I don't have my ovaries (part of the resection for the bowel cancer), so I could be eligible for the aromatase family, but I REALLY have VERY LITTLE trouble with the Tamoxifen....
    Hugs, Kathi
  • kathydaly
    kathydaly Member Posts: 81
    #4
    KathiM said:

    Oh, kathy....I have yet to test the sides of arimidex. After the treatments for my two cancers (rectal, stage III, breast, stage IIB), I ended up osteoporotic. So, my onc decided on Tamoxifen for the first year to build my bones. Could you do this route? I don't have my ovaries (part of the resection for the bowel cancer), so I could be eligible for the aromatase family, but I REALLY have VERY LITTLE trouble with the Tamoxifen....
    Hugs, Kathi

    ty both for responding so much, i went to bed last night like a child hoping for some. susan, ty for putting what i said in the OK column, it was in response on pg. 7 to anyone on arimidex. it prob wasn't even that bad.

    and kathi, i did tamoxifen for 5yrs. and the only bad side-effects were increased and terrible hot flashes daily, also immense weight gain, 80 lbs., but it was v good and it did it's job for a long time. i also broke bones and or ribs during that time and on the arimidex, so i don't know what that means. there were no AI'S then tho either.


    i had my ovaries removed as well. MSKC, did a genetic study on my sister and i, felt we were both v young, pre-menopausal, no history of bc in family. they strongly urged me to do it, even tho we tested neg for BRCA1 and 2, they felt we would be pos. for some other gene not discovered yet. and my onc wanted me to, so i did. i always do what she tells me, well almost always, i didnt go on the aromasin after i recovered from the arimidex like she said to.

    i am an anomoly as far as the length and breadth of my reactions to the arimidex i think. so i do not want to be a doomsayer about arimidex. i am an anomoly also in the fact that i have pain w/my bc which is what has saved my life w/it too.

    you at least know there are side effects w/it, i went on for 8 mos. just thinking i was crazy, as it all got progessively worse. some of my family and friends may still say i'm crazy, hehe

    i can't tell u how just having said all this to wonderful ladies makes me feel better already!! i know i will get through this susan, because of my faith. oh, and my church already got me rides for my 2 visits into MSKC next week.

    monday--pain clinic
    friday--cardiologist and CAT scan

    Gratefully and withlove and hugggs, kathy
  • mssue
    mssue Member Posts: 242
    #5
    kathydaly said:

    ty both for responding so much, i went to bed last night like a child hoping for some. susan, ty for putting what i said in the OK column, it was in response on pg. 7 to anyone on arimidex. it prob wasn't even that bad.

    and kathi, i did tamoxifen for 5yrs. and the only bad side-effects were increased and terrible hot flashes daily, also immense weight gain, 80 lbs., but it was v good and it did it's job for a long time. i also broke bones and or ribs during that time and on the arimidex, so i don't know what that means. there were no AI'S then tho either.


    i had my ovaries removed as well. MSKC, did a genetic study on my sister and i, felt we were both v young, pre-menopausal, no history of bc in family. they strongly urged me to do it, even tho we tested neg for BRCA1 and 2, they felt we would be pos. for some other gene not discovered yet. and my onc wanted me to, so i did. i always do what she tells me, well almost always, i didnt go on the aromasin after i recovered from the arimidex like she said to.

    i am an anomoly as far as the length and breadth of my reactions to the arimidex i think. so i do not want to be a doomsayer about arimidex. i am an anomoly also in the fact that i have pain w/my bc which is what has saved my life w/it too.

    you at least know there are side effects w/it, i went on for 8 mos. just thinking i was crazy, as it all got progessively worse. some of my family and friends may still say i'm crazy, hehe

    i can't tell u how just having said all this to wonderful ladies makes me feel better already!! i know i will get through this susan, because of my faith. oh, and my church already got me rides for my 2 visits into MSKC next week.

    monday--pain clinic
    friday--cardiologist and CAT scan

    Gratefully and withlove and hugggs, kathy

    My heart goes out to You,so so much You have been thru and still standing.I'm really upset right now with this disease too.I just can't spill it all out on paper right yet.
    I just wanted You to know that I am praying for you as are many.It's good to know God has given You many angels to help You along this journey.
    ((HUGS))
    Sue
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    kathydaly said:

    ty both for responding so much, i went to bed last night like a child hoping for some. susan, ty for putting what i said in the OK column, it was in response on pg. 7 to anyone on arimidex. it prob wasn't even that bad.

    and kathi, i did tamoxifen for 5yrs. and the only bad side-effects were increased and terrible hot flashes daily, also immense weight gain, 80 lbs., but it was v good and it did it's job for a long time. i also broke bones and or ribs during that time and on the arimidex, so i don't know what that means. there were no AI'S then tho either.


    i had my ovaries removed as well. MSKC, did a genetic study on my sister and i, felt we were both v young, pre-menopausal, no history of bc in family. they strongly urged me to do it, even tho we tested neg for BRCA1 and 2, they felt we would be pos. for some other gene not discovered yet. and my onc wanted me to, so i did. i always do what she tells me, well almost always, i didnt go on the aromasin after i recovered from the arimidex like she said to.

    i am an anomoly as far as the length and breadth of my reactions to the arimidex i think. so i do not want to be a doomsayer about arimidex. i am an anomoly also in the fact that i have pain w/my bc which is what has saved my life w/it too.

    you at least know there are side effects w/it, i went on for 8 mos. just thinking i was crazy, as it all got progessively worse. some of my family and friends may still say i'm crazy, hehe

    i can't tell u how just having said all this to wonderful ladies makes me feel better already!! i know i will get through this susan, because of my faith. oh, and my church already got me rides for my 2 visits into MSKC next week.

    monday--pain clinic
    friday--cardiologist and CAT scan

    Gratefully and withlove and hugggs, kathy

    I know the second time for me, when they said 'chemo' again...I went to 5 second opinions to try to find SOMEONE who would tell me I didn't have to do this again!
    Sorry I missed that you had already done the tamoxifen thing...I sometimes have chemo-eyes!!!
    My breast cancer was found during the PET scan to see where my rectal cancer had spread to (if anywhere). It was lurking in an 11-year-old lump that had been mammo'ed every year!!!!
    As far as the bones, have you had a dexascan? I was surprised when mine came back -2.7! I am now taking Actonel to build back.
    At the end of my treatment, I sort of questioned why I was saved, having just said goodbye to a young friend who lost his fight with the beast. After all, I am 51. I then said "Here are my hand, Lord...do with them what you will. And I will try hard to not question that will". He had definately challenged me since then...but I have grown as a result.
    I live somewhat in fear of reoccurance...from either the breast or the rectal...but I, like you, know I would pick up the sword and fight again!

    Hugs to a very strong lady!
    Kathi
  • kathydaly
    kathydaly Member Posts: 81
    #7
    mssue said:

    My heart goes out to You,so so much You have been thru and still standing.I'm really upset right now with this disease too.I just can't spill it all out on paper right yet.
    I just wanted You to know that I am praying for you as are many.It's good to know God has given You many angels to help You along this journey.
    ((HUGS))
    Sue

    dear, dear mssue, ty sweetie for ur response. i was jusy wondering if u could share now about ur anger w/the beast. it helped me sooo much and i know writing it down is v hard, bec. it's a form of reliving it but it is also 1 more way for cleansing and extracting the beast from us, with much love and prayers, kathy

    and kathim, what is a dexascan? and also i know u would pick up that sword again too, because we r survivors because we r fighters, gf. ok i hope u get to read these, i mean is this the only way to respond directly to a respondee, lmao at myself, i really do seem to complicate things.

    with much love and the v important hugs, kathy

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