Starting chemo Sept 05

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  • txred9876
    txred9876 Member Posts: 392
    edited May 2009

    Sandra,

     Thats great about the weight loss and feeling great!!!! I am having my bi-annual ct scan on june12th followed by my bimonthly oncoloby appt (he won't go more then 2 months yet!)

    I am now down 32 lbs and actually road 38 miles last Sunday!

    Tina

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited May 2009

    Tina, amazing amazing amazing!!!!!

    Well, we hit the four year anniversary for my lump discovery. And on that four year anniversary, my lovely daughter graduated from college. We went out to her school and spent three days. We met professors, watched the Laurel parade, and heard a lot of smart women making speeches. The kid has had several interviews for very competitive positions, but hasn't been hired for any of them. She isn't defeated. She continues to send out applications, resumes and cover letters. Hard time to be graduating and looking for a job.

    Sadly, my oncologist checkup at the beginning of the month didn't go so well. Though I feel fine, my numbers tell a different story. Everything is going up... tumor markers, hemaglobans and my blood oxygen levels are "of concern." We redid the tests, and they had gone up even more. We are waiting for something called the Jak2 mutation test. Oncologist is worried about my bone marrow. This test will take another 2 weeks to come back, so nothing to do but live life and push this to the back of my mind.

    Trying to pretend that I am not waiting for another test result as best as I can. 

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  • Pegk
    Pegk Member Posts: 389
    edited May 2009

    Markers Shmarkers WTF! We'll be waiting with you, Susan, and praying for a good result from the test.

    Congratulations to your daughter! It's a tough time to be starting out in the world, but I'm sure she'll do fine. My daughter is in the same predicament.

    Way to go Tina! What a terrific accomplishment! The race and the weight loss, truly impressive.

    You, too, Sandra! Great job! 

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  • txred9876
    txred9876 Member Posts: 392
    edited June 2009

    Susan,

    What a great accomplishment for your daughter!!

    Sending lots of good prayers your way....because only he knows our destination....even before we do!!

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  • txred9876
    txred9876 Member Posts: 392
    edited June 2009

    I am off this weekend to do the bike portion of the danskin triathlon!!! What can I say.... I am hooked!

    Our team is all breast cancer survivors. Our swimmer is Hannah. In 2007 she lost 40 lbs to do the Danskin triathlon for her 50 year present - one week later she found a lump. Our other survivor Sheron is going to do the Run. Sheron is about 5 years out (if I remember correctly). Sheron loves to run and Hannah loves to swim......and I am begining to love to BIKE!

    One of our instructors went on a three week trip to Israel and Egypt.She said my weight loss is really showing (she had not seen me in a month).

     We have our after party this week on Wednesday....free food and fun!

     I am now in training to ride 65 miles in oct. for the Mamma Jamma bike ride!!!!Anyone want to come join us??? :)

    Tina

    PS 33 lbs and counting..... I am starting to be a whole new me!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2009

    Hi all... well today is my 4-year cancerversary and the doctor called. Re-tests were even higher so scans for me.  :-(

    Thursday I will get a CT and Bone Scan. I hate feeling anxious, but today was not stellar. I mis-measured the yeast and had to dump my bread dough. The upstairs router went kaput and I spent time in the hot attic trying to revive it. You know, somedays, it just doesn't pay to wake up!

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  • txred9876
    txred9876 Member Posts: 392
    edited June 2009

    Susan,

     Sorry to hear about your woes....I know the feeling. Just take things one day at a time and soon enough you will know what is going on or not going on. Not knowing...as we know is the hardest time of all.

    Tina

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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2009

    Hi - I have emailed you Susan - big hugs.

    Tina, fabulous - I am 20.5 lbs down now - not up to speed with the exercise as you are but I am walking more (Peg you will be pleased to know) - not up to your walking Peg, but I am planning a 4 mile walk this afternoon.

    Speak soon.

    Sandra from the UK xxxxx

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  • txred9876
    txred9876 Member Posts: 392
    edited June 2009

    Susan,

     Have you gotten your test restults back yet? We are here for you when you do.

    Tina

    PS sandra....congrats on the weight loss....I know how hard it is. I am up to 34 lbs and have my bi-monthly doctors appt / ct scan restults wednesday.

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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2009

    Good vibes to you Tina for Wednesday - I had my mammo results, no change from 2007, so that's reassuring - Onc appointment on 2 July.

    I am concerned about Susan, I pmd but no reply as yet.

    Sandra from the UK xx

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2009

    Well, the reports are back. And it is cautious good news. The numbers are up, but they just don't know why. CT scan and bone scan together indicate that there is change to my bone, but it can't be called metastic. My red blood cells are still too great a percentage, but I don't have a JAK2 mutation.

    I know I should be overjoyed, but I am not for some reason. I am back to a 3-month checkup schedule, and will be more closely monitored than ever. The anxiety caused by the blood tests and subsequent scans has just sucked me dry emotionally. The doctor said something like "this is good news for you, but we must monitor these tests closely for the next year." Too somber to make me happy.

    Thanks for all of your support. Damn I hate this disease! 

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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2009

    Well I am going to go with the Oncologist Susan, we will look on it as a blip!  Onward and forward Susan!

    One of my candidates has been confirmed with a mild case of swine flue today - aghhhh.  Now I am worrying about her finishing her qual on ;-) 

    Speak soon.

     Sandra from the UK

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  • Pegk
    Pegk Member Posts: 389
    edited June 2009

    Well, Susan, that IS good news! I know it's a drag, but that's why we all keep enduring these tests. It's another battle in the war, but try not to worry. GOOD News!

    Sandra, keep washing your hands. (There are posters all over my studio, reminding us -as if we didn't already- to avoid getting sick) 

    Meanwhile, thanks to the economy (that's their excuse) they've cut everybody's hours-not the work of course, just the amount they'll pay you for.

    So, in order to meet my expenses, I've taken another job, subbing on a Broadway show, "Chicago". I'll be filling in for someone who's on vacation for the next 2 weeks. I'm not thrilled about having to work on the weekend, but I'm looking forward to a change of scenery.

    Summer's coming...

    Peggy 

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  • txred9876
    txred9876 Member Posts: 392
    edited June 2009

    Susan,

    keep your chin up! You got good news and going to the doctor more frequent is not the end of the world. I know how the anxiety can get the best of us and I hope now it will come to a more managable level!

    Sandra,

    do you have some of those curte little masks? (i hated them during chemo!) I hope all is ok with your candidate and the swine flu.

    Peg,

    Have fun with your temp change of scenery. I hope things start picking up for you!

    on the tina front....

    I got my scans results back yesterday and they are all clean. I am fast approaching year 4 and looking on to many more to come.

    It has been over 100 degrees all week and that makes it very hard to exercise! I got a new bike! I am so excited! Here is a picture of it: http://www.birkenheadcycles.co.uk/products.php?plid=m1b0s134p609

    I went out tuesday even though it was so hot and did about 12 miles before calling it a good maiden voyage. I have tomorrow off and will go in the morning when its much cooler. I think I am going to go around 24-26 miles (if all goes as planned). I am going to go on a 20-30 mile group ride on sat and a 10-15 mile beginer training ride (I am going to help be a leader of the group). We are training for the Mamma Jamma bike ride that is in oct. I have a good friend that told me....oh you are already signed up for 65 and now with your new bike you should be able to do a centry with me......all 100 miles.....we shall see!

    Tina

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  • sholroyd
    sholroyd Member Posts: 288
    edited June 2009

    And I feel you will go with the 100 Tina - love the bike.  Did I tell you I am going to try horse riding again?- I used to have horses when I was a teenager, have ridden since but not often, I am also walking a little more - can't see myself biking so many miles as you do Tina - very well done to you.  I wonder how Janet is getting on with the stabes she set up for cancer sufferers? If you still log in Janet, would love to hear from you.

    Now then Peg, will you be one of those ladies with their leg up on one chair with their top hats on (and very little else)? seriously though I am sorry you have also been hit by the recession - we have too - very annoying.

    Susan, I hope you are starting to feel a little more upbeat - I was getting myself in a tizz over my mammo result - all ok thankfully.

    I have a note that is Maxine's birthday - Happy birthday Maxine if you still log on.

    Speak soon.

    Sandra from the UK xx

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2009

    Gentle Bump!

    My kid got a job that she wants!!! Whoohoooo! Otherwise, my life is just about making food for the family and for my sick uncle, working for clients and trying to enjoy our garden. The rain this month has been ridiculous. We have had so much rain, a three-day nor'easter.... all of us feel waterlogged.

    Have decided to go to a yearly conference in August and extend for a few days to do a small vacation. My husband's first time in SF. We are looking forward to having some time together. All the news from here. Gosh, my life is boring. 

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  • Calico
    Calico Member Posts: 1,108
    edited July 2009

    Hi gals,

    checking in....

    Tina,

    you go girl, wonderful stamina!!!

    Pegk,

    sorry about the job, we might be in a crunch two in a couple of months....

    Tina,

    how are you doing? Riding sounds fun, I did a bit when I was a teen but not enough to call me a 'rider'.

    Maxine,

    happy belated birthday, hope you are doing okay

    Liezel,

    you are brave to try for a little girl. I would be way to scared to tell you the truth. I tought we are estrogen machines during pregnancy? Scary, nevertheless I wish you the best trying (having sex early before ovulation gets you a chance for a girl because the girl sperm lives longer I think lol)

    Susan,

    so sorry to hear about your troubles. I had high red blood count and bone marrow light up on MRI in November due to antidepressants, did lower my oxygen and the body responded, sort of like deep sleep, low breathing and heart beat.....

    I hope there is an easy explanation for you. How did they explain the bone scan? Just arthritis?

    Did you get a brain MRI too? Congrats to your DD for getting the job, yayyy.....it must be so exciting for her!!

    I had a CT for lower abd. pain in April. They found a lesion on the liver, 5 milimeters. I thought it is an old cyst but that was on the other lobe back then and is gone. Nobody is concerned yet but me....as usual lol....I was hoping for a MRI but get another CT this months as well as all the blood, TM's etc. I was hoping for a calm, quiet summer.....no worries, nobody in the family on crutches or otherwise....cancer sucks, anxiety sucks...

    Bilirubin is up a tad but other liver panel is peachy (Femara package says if bili is up it is no good..... TM's are good.

    So just hanging, waiting, and hoping.

    Did well with my weight but took DD to Disney and the beaches, gained 5, I am soooo mad at myself. DD is walking fine, a year out from hip replacement but no more sports, going to be a senior in HS, where does the time go?

    Hope everybody else is doing well here.

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  • txred9876
    txred9876 Member Posts: 392
    edited July 2009

    Well things are moving right along around here... I had a little setback and we think it is just my Lymphedema flaring up but since its red.....My doctor wants to biopy it next week if it does not go away. It is presenting itself very similar to the Inflamatory but I am not anxious about it at all. I am going about my training as normal and going with the flow of things.

    Sandra,

    I have not been horse back riding since I got sick but I do enjoy it also. GO for it.... one never knows what life will throw at us!

    Susan,

     Can you send some of the rain down here please!!! I am so glad your daughter landed the job she wanted. I know you were a bit worried aobut her and the economy.

    Calico,

    Time sure flies......she is almost done! I cannot believe she is going to be a senior. Do not be so hard on yourself about the weight. It is how you feel not the pounds that count.

     Take care everyone!

    Tina

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  • txred9876
    txred9876 Member Posts: 392
    edited July 2009

    how is the weigt loss going......for those of you on that path!!

    I have now lost 37lbs!

    Tina

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2009

    Tina, You are amazing! I am at 12 lbs.... but I am not working too hard at it to be honest.

    My news is slim. The Uncle I have been helping take care of has almost decided to move into Palliative Care. He simply can't believe that he is given a 1% chance of recovering. This is a man who lives on Denial Island. The kid starts her new job on Monday. She is nervous and excited at the same time. She continues to look at apartments and meet potential room-mates, but nothing has been just right yet. She is so ready to have her own place. And who can blame her?

    Headed to San Francisco for a conference in August. Husband is coming along, and we are spending a couple of extra days to do some sightseeing. I am looking forward to a trip, even if I will spend much of the time in a function room at a big hotel.

    *susan* 

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  • Liezel
    Liezel Member Posts: 192
    edited July 2009

    Hi Everybody,

     Sorry I have been MIA for so long.  Life is hectic at the moment, and company has started with lay offs, so everybody panicking.  I have a meeting on 20 July, so we'll see what happens then....

    Susan, sorry to hear about your TM's.  Hoping with you it is no serious.  And congrats on your daughter's job!!  Wow, a big step in her life....

    Tina, and everybody who is losing weight - I am seriously jealous.  My weight is not moving at all!  I guess the fact that it is stable is good though.  Tina, in awe of your achievements.  Never thought I'll say this to anybody, but seriously hope it is Lymphedema.....

    Peg, sorry to hear about the cutting back and the extra job.  Had a nice chuckle about Sandra's comment though....

    All is well otherwise here.  Still not pregnant.  Last period was 2 days late, and had me excited for a bit, but it was not to be.  Going through some drama with dh, but even though it is painfull, this will hopefully make us stronger.  He has also committed to personal counselling, so I am hoping that it will be good for him personally as well. 

    We just got back from 10 days in the deserts of Namibia.  An amazing and humbling experience....

    Keep well everybody, I'll try to check on all of you more often.....

     Liezel

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  • txred9876
    txred9876 Member Posts: 392
    edited July 2009

    Susan,

    every pound lost is an achievment! I am glad to hear your daugher is going to start her new job monday. Sorry to hear about your uncle and the fact he is in denial makes it rough.

     I have some good and bad news ...... we think my issues are Lymphedema. If I use my flexitouch and gret out of my bike shorts asap it seems to have gotten better.It is just such a pain because you have to plan and hour and 15 min or so to use the machine after exercising and if you do it after work starting at 6 and ending at 8....drive home 8:30ish then take shower 9pm then try to eat in there somewhere and lay on the machine. But..... it is a small price to pay to be alive. I keep telling myself and thanking God for this small miracle!

    Liezel,

    A group called Team Survivor has helped motivate me to get moving and keep moving. They want me to do another triathlon in August but I think it will be to hot and the lakes are very low so you have a long way between the water and the transition aarea. I think I will pass this time and keep working toward my centry!

    Your vacation sounds like a fun time. I love to travel but kind of afraid to these days. I also have to take my machine and cpap so its a lot of extra stuff.

    Take care everyone....we are off to Dallas for a wedding in the morning.

    Tina

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  • Calico
    Calico Member Posts: 1,108
    edited July 2009

    Tina,

    glad it's 'only' lymphedema, you had me scared there... 

    Susan,

    how are you feeling? 

    Liezel,

    so nice to see you. Sorry you guys have a rough patch.

    I'm having some tests done and see the onc in 2 weeks....

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  • sholroyd
    sholroyd Member Posts: 288
    edited July 2009

    Hi all,

    Leizel, how did the 20th meeting go?  I am glad your hubby is having personal counselling and really hope it makes all the difference to you both.

    Tina, you are so positive in your thinking - this will take you a long way - it already has!  Hope the wedding was fab.

    I have just come back from 3 days in London with daughter and 2 grandsons - had a good time and only got wet once (on the open top bus tour) - did Lion King, Changing of the Guard, eat at Rainforest Café - I PUT ON 4LBS!!!! (almost 2 stone though now).   I thought of you Susan when we passed Somerset House.

    Susan, what is the topic of the August conference?

    Give that darling daughter of yours a hug from me and pass on my thoughts for her to enjoy her new job and her own place when she finds somewhere suitable.

    Calico sorry you are still having a lot of worry but know I am thinking of you.   Your daughter has done so well, with you firmly behind her all the time.

    I am feeling great at the moment - this 'time of the year' tests have all come back good and I just feel so on a high - I am spending money like mad at the moment - hence I have talked husband into going to London for New Year - I have now booked, same hotel I stayed in when I met you Susan - Strand Palace - very good price.  We are going to see Les Miserables and I want to be in Trafalgar square at midnight (must be mad).  This time will be good for us.

    Haven't got round to the horse-riding yet - perhaps I will go to Janet's farm??!!

    I sponsored Peg today and then went on to pay for a piece of furniture with the same credit card - the fraud squad thought something was going on cos of the US sponsorship and stopped my card - I had to sort it out before I could pay for my furniture ;-)  Oh well, who promised life would be easy.

    Speak soon.

    Sandra from the UK

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  • txred9876
    txred9876 Member Posts: 392
    edited July 2009

     The wedding was very beautiful but I could have done without some of the heat. The weather is just about to cook us to death. We have had 41 days over 100 at the last count (since sometime in june). It is hampering my riding some so I am going to join a gym! I have now lost just shy of 39lbs!

    I road last Saturday with a group (there were 4 of us). I knew the 47 miles was a bit far for me but started out anyway. We did 26.6 miles at a 15mph rate (faster then I normally ride by several miles per hour). I called for SAG to come pick me up! Thats what they are there for and I still got one heck of a workout in!

    Well I have gone and done it... I registered for the sweet and twisted triathlon in mid august! This one has a slightly shorter swim - 500m instead of 800m, the bike is 15ish miles instead of 12ish, and the run(walk for me) is still a 5K or 3.1 miles.Most of the time it becomes mind over matter. The mind is a powerful drug!! lol

    I am still training for my centry...or however long i make it. I know for sure I can make the 65 miles between 8am-4:30pm but we shall see how much more I improve between now and then for the centry. I have come a long way in a very short time so I am not worried about it and plan to go out and have fun with my team mates and friends.

    sandra your trips sound wonderful! Maybe one of these days I will make a trip over! When I can find a responsible babysitter for my babies!

    Tina

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  • foxxf
    foxxf Member Posts: 171
    edited July 2009

    Hi all,

    I have been off the boards for a long time now, all the usual excuses but honestly I was unable to think of us all hanging around waiting to win the mets lotto. Opening the boards and praying that one of my dear friends did not have bad news for us.

    But it seems that I am the winner in the mets lotto after all.

    Last week my lung cavity filled with fluid and after a week in hospital they drained it, sent it for test while I had ct and bone scans. The fluid had mets breast cancer cells as does my chest wall (lung cavity filling with fluid again) and left lymph nodes.(opp side to previous bc)

    I am starting chemo next week with a new drug called Abraxane.

     Onc says a cure is no longer possible but we are looking for control.

    Not sure what to say to friends and family (children) Sarah is 12 now and Jack 8, they understand so much more this time.

    Sorry to dump this on you, I will check out the mets boards also.

     Thankyou

    love Nicole

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2009

    oh my dearest Nicole.

    Of course we always knew that one of us was bound to get the brass ring, but I fervently dreamed that it just wouldn't happen. [And, of course, I thought it would be me.] But, but, but..... this seems so unfair.

    Is there anything we can do to support you? I feel powerless to be of much help, but let us know if you need anything, besides our thoughts etc....

    With all my thoughts,   *susan* 

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  • sholroyd
    sholroyd Member Posts: 288
    edited August 2009

    All my friends from this board are in my thoughts, especially you Nicole at this time - be strong sweetheart whilst you go into battle again.  PLEASE, as Susan says, if you need anything besides our thoughts, please ask - you are not 'dumping' on us!

    I am swearing lots here in the UK x?!x*&£! 

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  • foxxf
    foxxf Member Posts: 171
    edited August 2009

    Hi,

    had my first dose of chemo (Abraxane) yesterday and guess what no side effects. Last time I would be in bed for a week this time nothing.

     I worked last night after chemo then went to bed around 8.30pm got up this morning doing the washing and been shopping. going for a nanna nap soon though.

     Lets hope it's kicking Cancer A$$ with out kicking mine.

     Going next week to get a port a cath put back in then another round of chemo on friday. we go 3 weeks on one week off.

     so all good here wait and see blood work to see results.

    best wishes to all

    Nicole

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2009

    Nicole, No side effects? What miracle drug is this? I actually know this drug, and it has had great success kicking tons of a$$. How are the kids? Have you had that talk with them?

    Listen to your body. Nap when it wants a nap. Eat snacks when you need them. Take time for yourself. Give these meds every advantage.

    And a big hug. Putting that port back must be a reality-check. But you have us by your side, along with all your real-life support system.

    Take care, *susan* 

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