Starting chemo Sept 05

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  • Liezel
    Liezel Member Posts: 192
    edited June 2011

    Yeah Susan!!!!!!  You have brightened a very gloomy day for me!  So incredibly happy for you and your family!!

     I am well.  Scans scheduled for 27 June.  Bit stressed about baby Matt.  Last TM's and scans showed TM up a little and a spot on his liver.  MRI was inconclusive so we will do bloods and ultra sound again this month.  If TMs up or spot bigger they will go in for biopsy.  I am sooooo scared.  Could handle chemo when it was me (only just) but the posibility of my baby going trough it makes me incredibly sad.

    I just hate how 6 years later this frucking disease still control my life.....

     Love to you all!

    Liezel

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2011

    Oh Liezel,

    I know just what you mean! I would rather go through 6 rounds of chemo than have my kid go through even one. Please let us know how the next set of scans go.

    Sending big positive thoughts.

    *susan* 

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  • txred9876
    txred9876 Member Posts: 392
    edited June 2011

    Susan,

     I am so glad you and Peg got to meet but when I read you were NED.....I did a happy dance for ya!!!!

    Tina

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  • Liezel
    Liezel Member Posts: 192
    edited June 2011

    Hi Everybody!

    Wow, from being so worried and concerned about baby Matt we have gone to being absolutely elated!  His TM down again.  The new pediatric onc we are scheduled to see next week contacted us from Boston where she discussed his case with some experts and they all agree that the route we have been following (set by his urologist who did not want us to see an onc) has been unnecessary and a waste of time.  According to them the TM we thought was abnormal is NORMAL for babies.  They also agree with a dx we got from Birmingham that the original tumor was a Juvenile Granulosa Cell Tumor and that it is always benign!

    So we have cancelled his scans since it is a complete waste.  You can all imagine my relief!  Yesterday morning I woke up with a very heart, thinking that it was going to be the worst day of my life.  I went to bed elated and slightly tipsy from celebrating!  The onc words - go back to your normal life, there is nothing to worry about - made us do just that.

    Love to you all!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2011

    Wonderful news! Love that my city is part of the story. So live..... and tell me what is a "normal" life these days. :-)

    Thank you SOOOOO much for sharing.

    *susan* 

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  • Calico
    Calico Member Posts: 1,108
    edited June 2011

    Liezel,

    wow, what a story!!! I am so happy about this happy ending :)

    Susan,

    You are an inspiration every day!!

    Has anybody heard of Tinkermax? Wondering how she is doing??

    Hugs all around!! 

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  • Calico
    Calico Member Posts: 1,108
    edited August 2011

    Sending a round of hugs to my September sisters ;)

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2011

    My husband and I celebrate our 29th wedding anniversary yesterday. We were both a bit grumpy. The kitchen was hot and the humidity was just awful. But in the end, we sat down to a lovely dinner with some nice wine and toasted ourselves.

    Right now I am dealing with some side effects of all this treatment. They are saying I have Graves Disease which is rather nasty. Mostly my problems have been with my eyes, fatigue and overheating. How I can have Graves Disease and not be able to loose weight is a mystery however. Meeting with an eye specialist this week. Not sure that they can treat that separately or not. Endro wants to wait for a few more months of blood work before doing anything.

    Hope everyone is doing well....

    *susan* 

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  • mygonzo
    mygonzo Member Posts: 2
    edited August 2011

    Hey,, get an air conditioner.  I will contribute to one.  Graves disease is do-able. My sister and daughter stayed here for about a week and she practiced on my poor violin. You have done so much better than I have far as lasting husbands.  But on the positive side.  They all lasted 10 years and I'm am still on good terms with them PS, eyes still wonky from falling down the stairs. Will be good after maybe second surgery.

    Thanks for Medicaid and Disability

    Oh, PS I asked that my account be deleted 1 week ago because I was overwhelmed , But even though I asked for my name back, I have my cat's name

    Doing happy dance for NED too.

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  • Calico
    Calico Member Posts: 1,108
    edited August 2011

    Susan,

    Happy Anniversary!!

    Sorry to hear about the Graves disease. What is the treatment normally?

    Can they 'just' take the thyroid out?

    Sending you good vibes and prayers Susan, hang in there! 

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  • Calico
    Calico Member Posts: 1,108
    edited August 2011

    Anybody in contact with Tinkermax? I was thinking about her today and thought I ask.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2011

    i am not all that interested in surgery or anoiything that is non-reversable. anyhow we are doing some wait and see for now. lots of blood panels until we can see a trend.

    had another double shot today after confirming that markers are stable. another month has passed quickly. will type more when i am on a computer with a real keyboard.

    *susan*

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  • Pegk
    Pegk Member Posts: 389
    edited August 2011

    Six years ago this week I was dreading my first chemotherapy as Katrina was headed for the gulf coast. I was so grateful then that all I had to worry about was my health and not a weather emergency.

    Today I'm dreading the approach of a hurricane and the damage from wind and rain. At least my health is good.

    Wishing health and safety to my September Sisters (especially those on the east coast)

    Peggy 

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  • Calico
    Calico Member Posts: 1,108
    edited August 2011

    Peggy,

    Best wishes for avoiding Irene. Can't believe we are coming up to the 6th year September anniversary. !!!

    Susan,

    Yayyy for stable markers!!!

    Be safe everybody at the east coast!!! 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2011

    Irene is turning into a non-event around here. Still waiting for the winds and rain....

    *susan* 

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  • Calico
    Calico Member Posts: 1,108
    edited October 2011

    Sending a round of hugs to my September sisters.....pink hell month is upon us, another September has gone by......

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  • sholroyd
    sholroyd Member Posts: 288
    edited October 2011

    Just had a read xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx to you all.

    I had my last little white pill last night.  All ok with me.

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  • Calico
    Calico Member Posts: 1,108
    edited October 2011

    Sandra, 

    congrats on the last pill ;) 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2011

    Sandra,

    You are done! What a wonderful thing..... how are your joints? Is the achiness going away? I admit I am just a tad jealous, but very happy for you at the same time.

    *susan* 

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  • sholroyd
    sholroyd Member Posts: 288
    edited December 2011

    Here are my Christmas wishes to you all....

     http://www.jacquielawson.com/viewcard.asp?code=3192597397586&source=jl999

    Susan, I can understand your feeling; my aches and pains are still here, but then I am thinking I am getting older too.  I have recently had terrible pain in my right arm (the op side) but anti-inflammatories and pain killers got rid of the bad pain and I am now left with a 'doable' ache.  Susan does NED mean it has gone away or it is stable?   Anyway you have to to behave as I am coming in November 2012 to see you and Peg  - that is the plan - wonder if anyone else would be around Boston/New York in November 2012.

    I too wonder about all the September sisters - where are you, what are you doing??

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited December 2011

    Sandra,

    The NED thing means No Evidence of Disease, which means they can't find any mets in my system. The unsaid is that, there are nasty little mutant cells still there, and eventually they will figure out how to circumvent the drugs. But until then, I am in fact, considered to be, cancer free.

    Had another PET scan on December 23rd, and once again, "no signifigant findings." Those are really good words. My doctor actually called me that night to let me know the results! She didn't want me to worry over the Christmas weekend. I think she is a keeper.

    The way I am going, I am almost ready to hope that I will be one the long-termers. Just don't want to jinx my great luck.  :-) 

    Merry Christmas to all.... and a great 2012. The rest of you are moving on, and that is the way it should be.

    *susan* 

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  • Calico
    Calico Member Posts: 1,108
    edited December 2011

    Hi girls,

    nice to see a post from you guys again.

    Susan,

    Great news on your scan!!! I too hope that you will be a long timer!!

    Sandra,

    maybe you have an inflamed tendon?

    Have it checked out....maybe physical therapy will help. Your trip will be fun.

    Wishing all September sisters a happy, peaceful and foremost a healthy New Year!!! 

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  • Pegk
    Pegk Member Posts: 389
    edited January 2012

    Holiday schedule at work and we just put 16 new cast members in the NY production of War Horse. I've been so busy but it's so great to be busy with work and not health issues.

    I hope all of you have a Happy and Healthy New Year. I'm so looking forward to seeing Sandra in November!

    Love, Peggy 

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  • Calico
    Calico Member Posts: 1,108
    edited January 2012

    Peggy,

    good to hear that your work is picking up again.

    All the best to you too in 2012 

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  • sholroyd
    sholroyd Member Posts: 288
    edited January 2012

    For Tina.

    http://www.jacquielawson.com/viewcard.asp?code=3332133967586&source=jl999

    Hi all.

    My arm is ok - it is a degenerative thing - nothing sinister.

    Now starting to think I might do some booking for boston/New York - going to fish Susan's email out with all the suggestions.   Sandra xx

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  • sholroyd
    sholroyd Member Posts: 288
    edited February 2012

    Flight booked to Boston 21 November - I have done it!!!

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  • txred9876
    txred9876 Member Posts: 392
    edited February 2012

    Thank you for the birthday wish Sandra!!! 

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  • Pegk
    Pegk Member Posts: 389
    edited March 2012

    I'm looking forward to seeing Sandra in NY in November!!!

    Meanwhile I've got too much time on my hands because there's a cast on my wrist! I slipped and fell in 1 inch of slippery snow about 2 weeks ago during one of the mildest winters on record. I'll probably be out of work another 3 weeks. I'm counting my blessings because it's my left wrist and hasn't been too painful. I'm a little distressed because the orthopedic doctor said it could be considered a "failure of treatment". The arimidex I took for 5 years lead to a loss of bone density, which I thought was improving lately with infusions of Reclast.

    Take care of your bones everyone! 

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  • sholroyd
    sholroyd Member Posts: 288
    edited April 2012

    I am looking forward to meeting your boy NED in November Susan, LoL

    Tina, you are such an inspiration with the control you have taken over your weight, fitness etc - well done girl.

     Happy Easter thoughts to you all.

    http://www.jacquielawson.com/viewcard.asp?code=3445129027586&source=jl999

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  • Calico
    Calico Member Posts: 1,108
    edited September 2012

    Hi girls,

    September is almost done and I thought I shout a 'Hello sisters' into the round.

    7 years ago in September....we came a long way :)

    Hugs to all of you!! 

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