NEED HELP FROM ALL OF YOU! :-) Pretty please...............

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So...I have visited with many of you on this site...a few of you via private messages...however, I'm trying to keep everyone straight... because as hard as it may be to believe...

Besides....
Taking care of Brendon
Taking care of 3 daughters (softball practices, band concerts, school dances, temper tantrums, feeding them - yes!, I do have to do this from time to time or they get upset, the list goes on and on and on and on and on...)
Working full-time
Researching anything and everything I can on EC
Going to the doctor on a regular basis for B-12 shots
Driving...lots and lots of driving since the girls and I live 3 hours away from my husband
Working with 2 Governor offices (Kansas and Missouri) to declare April as EC Awareness Month
Dealing with NEW Parent-in-Laws that are ALWAYS there... (don't get me wrong, they are great people...just a little STRESSFUL!!)
Planning a wedding reception (and when will I have time to get a dress?!?)
Getting my name changed (why does this have to be so time-consuming!)

....So BESIDES these things....I do have other things on my plate and it would be soooo helpful if you could all reply and list this information for me so I can feed it into one of my many "tracking spreadsheets"... Did I mention I'm an analyst at my job?!?!? I LOVE SPREADSHEETS!! lol

So, please be so kind as to include...Your name, your sig. other name, who was diagnosed with cancer, what stage, any personal info you want to include (location, phone, email), where you are in your treatment, your age, when (if you are) will you be in Pittsburgh, when you had surgery, and how long you have shown NED (I just learned this new term - go ME!!! :-)

Now, I realize that not everyone will answer every question, but I need to be able to see everything in relation to one another. I realize in my spare time, I should pull everyone's profile to get this info...but today, in my spare time...I think I'm going to take the girls to the park!!! It's beautiful outside!!!

Thank you for understanding my dilemna!! :-)))) SMILE, it's almost FRIDAY!!!!

Susie

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
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    Susie,
    I will send you a

    Susie,

    I will send you a private message with the info. I too like spreadsheets and plan my days around my outlook calendar and have everything loaded into my I-Phone. I don't know what we all did without the technology in some ways I think life was far simpler.

    Best,
    Cindy
  • ArchTB
    ArchTB Member Posts: 150
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    There you go
    patient: Tom (husband)
    caregiver: Olya (that would be me)
    patient's age: 37 yo
    stage: T3N1M0 (stage 3)
    treated at: MSKCC
    location: New York
    diagnosed on: December 8, 2010
    treatment type: cisplatin and irinotecan (8 rounds, once a week, IV, no meta-port), radiation (28 treatments)
    treatment ended: March 31, 2011
    surgery type: most likely MIE at MSKCC
    surgery date: tentative May 16
    other conditions or medication: taking blood thinner shots, no j-tube
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
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    ArchTB said:

    There you go
    patient: Tom (husband)
    caregiver: Olya (that would be me)
    patient's age: 37 yo
    stage: T3N1M0 (stage 3)
    treated at: MSKCC
    location: New York
    diagnosed on: December 8, 2010
    treatment type: cisplatin and irinotecan (8 rounds, once a week, IV, no meta-port), radiation (28 treatments)
    treatment ended: March 31, 2011
    surgery type: most likely MIE at MSKCC
    surgery date: tentative May 16
    other conditions or medication: taking blood thinner shots, no j-tube

    Thank you Olya!
    Hi Olya,
    I've been thinking of you and wondering if you got the surgery scheduled for sure yet for Tom. Tom and Brendon are very close to the same age and diagnosed the same....so I've been reading all your posts and keeping close tabs on the both of you. Isn't nice to know you have a stalkers?!
    How is Tom's throat doing? Brendon is having a hard time with the burning... Just wondered if Tom experienced that and how long after treatment ended, did it begin feeling better?? Today was day #1 of NO treatments for Brendon. So thankful that stage is over.
    Thanks for your answers. That way I can put it all on one page. :-)
    Susie
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
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    Susie,
    I will send you a

    Susie,

    I will send you a private message with the info. I too like spreadsheets and plan my days around my outlook calendar and have everything loaded into my I-Phone. I don't know what we all did without the technology in some ways I think life was far simpler.

    Best,
    Cindy

    Sounds great Cindy!!
    I'm glad I'm not the only techno nerd here on this web site! :-)

    Hugs,
    Susie
  • This comment has been removed by the Moderator
  • ArchTB
    ArchTB Member Posts: 150
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    Thank you Olya!
    Hi Olya,
    I've been thinking of you and wondering if you got the surgery scheduled for sure yet for Tom. Tom and Brendon are very close to the same age and diagnosed the same....so I've been reading all your posts and keeping close tabs on the both of you. Isn't nice to know you have a stalkers?!
    How is Tom's throat doing? Brendon is having a hard time with the burning... Just wondered if Tom experienced that and how long after treatment ended, did it begin feeling better?? Today was day #1 of NO treatments for Brendon. So thankful that stage is over.
    Thanks for your answers. That way I can put it all on one page. :-)
    Susie

    I should write more then!
    Hi Susie,

    Tom is slowly getting better. The last week and a half of radiation (after chemo was over) were tough. But we sort of expected it, since EVERYONE I've talked to complained about the last weeks of treatment and first days of the recovery.

    He started to have nausea and lost any interest in food completely. I was insisting on him taking small bites throughout the day or else go on j-tube! We rather quickly figured out several food options that Tom could keep in, not throwing up immediately. He did not have much problem swallowing, definitely no pain in swallowing, more like blockage feeling. This continued throughout the first 3-4 days after the end of treatment, but I saw some other improvements: better sleep, a bit more energy (we started taking short walks). This past Wednesday (a week after the end of treatment) was the first day without throwing up! And yesterday we had a birthday party for our dog, and Tom unexpectedly ate a good piece of ham and cheese quiche - something that he could not even think of a couple days ago.

    So, do not be alarmed if the morning after the end of treatment Brendon does not jump off the bed and start singing - it might take a few days to get the voice back :)
  • Donna70
    Donna70 Member Posts: 852 Member
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    unknown said:

    This comment has been removed by the Moderator

    Hi Susie where do you get the time???
    Hi Susie,
    You sure are doing a lot!!!! Please take some time for yourself amid all of this chaos you are going thru. What a great caregiver to be trying so hard to look up all the info for Brendon. I love your answer William, you are too funny esp the spreadsheets!!!!
    Well Susie,
    I am 66, the 70 in my name is for my son, Mike's birth year, happiest year of my life having him. I was diagnosed July, 2009 with squamous cell ca in the esophagus. It was staged T3N1MO. I had cisplatin and 5FU treatments and radiation for 6 wks pre surgery in Baltimore MD at St. Joseph's Cancer Institute. Had a lot of trouble with eating and getting nutrition so was given NG tube before surgery. Had the Ivor Lewis esophagectomy in 12/09, the tumor and bad node were destroyed and a third of my stomach was removed too. Another bad node was found so I was given 3 cycles of Taxotere about 6 wks after my surgery. My wonderful hubby Ron took family leave and took very good care of me. I would have to say because of complications with my lungs, I developed COPD and asthma and some other stuff, I did not feel like myself till July, 2010. But all my scans have been clear ever since and I am so grateful to be around and have more time with my hubby, son, grands and my sibs and all the friends who supported me and prayed me thru.
    So hoping the best for Brendon and your whole family. Prayers for all, take care,
    Donna70
  • sandy1943
    sandy1943 Member Posts: 824
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    Sandra 67 yrs--Conley
    Sandra 67 yrs--Conley Ga.
    Dx-Nov.'07 Adiocarcinoma--T3N1M0
    Chemo-Cisplatin,Epirubicin, and 5Fu--No radiation.
    Surgery-May '08
    Emory Midtown Hospital-Atlanta Ga.
    first NED-August '08
  • cindyhils
    cindyhils Member Posts: 27
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    here you go susie
    name: cindy
    diagnosed august '09
    stage: II T2N0M0
    location: iowa
    age:47 at diagnosis
    28 radiation treatment
    2 rounds of cisplatin and 2 96hour infusion of 5-FU
    THE Surgery at mayo in rochester,mn on december '09
    NED since the surgery
  • mlbrooks852
    mlbrooks852 Member Posts: 67
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    Here you go
    Patient. Ivan. Age 65 my spouse
    Caregiver. Mary Lou. Me
    Diagnosis. Jan 2010
    Stage. Originally staged T1 N0 M0. But found three positive lymph nodes with the MIE
    Surgery. April 2010 MIE at KU. Dr Alkasspooles
    Chemo 5 tx starting in July 2010. Folfox at CTCA in Tulsa
    Subsequent PET and CT scans at CTCA every three months showing a few troublesome lymph nodes in thoracic area,not big enough to biopsy

    Setbacks to recovery.....fx left hip in Sept 2010 followed by a massively torn rotator cuff from trying to use a walker with no muscles to rely on...ugh!!!
  • cher76
    cher76 Member Posts: 292
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    Susie,
    I too have had trouble keeping up with everyone's story and information. I have not been able to find my way around this board too well. I feel that there should be somewhere where I can go back and find the discussions I have replied to or the discussions I have posted and others have replied to without having to look through all the pages. Maybe I just don't know where to look. I have found that I tend to remember those members who have a picture posted, hence I posted a picture this week. This picture was taken in August of 2010 before we knew of what was to come. Since that time my husband,Rickie, has lost 120 lbs. I will have to post a more current picture one of these days.
    Here is the info:
    * My user name: Cher76
    *My name: Cheryl
    *My husband's name: Rickie, age 54
    *We live in the Rio Grande Valley of Texas way down on the border of Mexico and near
    the Gulf of Mexico. (And yes there is much spillover violence here from the drug wars
    in Mexico regardless of what the administration chooses to tell us!)
    *Rickie was diagnosed with stage IV EC with mets to the bones on October 4, 2010. His
    tumor is 20cm long in the esophagus and extends 4 cm into the stomach with involvement
    of lymph nodes.
    *We immediately sought treatment at MD Anderson in Houston, Texas.
    *We were assigned to Dr. Ajani, a gastro oncologist, who prescribed palliative care.
    *First round of chemo consisted of oxaliplatin, Taxotere, and 5FU administered every 2
    weeks, with the 5FU being on a 48 hour pump.
    *First check up showed that the tumor had shrunk but the cancer had spread more into the
    bones, so we opted for a clinical trial. (Same one Cindy's Dad was on) At the end of
    February scans were done and the cancer had enlarged in the esophagus again.
    *Started new treatment first of March here at home. Dr. Ajani prescribed Iriontecan
    and Erbitux, and we receive it here at our oncologist in our hometown. My husband
    decided that he was tired of the 5 hour trips back and forth to Houston every 2 weeks.
    It is also nice to be at home where you have the support of your family and friends.
    *This is where we are now. The first of May we will travel to Houston to have scans and
    see if this treatment is working. We are considering the possibility of traveling to
    UPMC to see the oncologist there for a second opinion.
    *We have been married for 34 years, have 3 grown children, a son and two daughters,and
    two beautiful granddaughters. We are fortunate that my husband managed our family
    business and now our son has stepped up into that position. I taught school for 33 years
    when, last spring I woke up one morning and told my husband that my mind was made up
    and I was going to retire at the end of the school year. This was before we had any clue
    of what was to come, and I know in my heart that God made that decision for me. There is
    no way I could have taught 3rd grade and help him fight this disease. I am here everyday
    with him and we are in this fight together. I thank God for the wonderful summer we had
    together before this began. We had a great time traveling and visiting family and friends
    Everyday I pray for peace and time- peace in the acceptance of this diagnosis and what it bring to our lives, and time - time to spend with each other, our family and friends,
    and time for a cure to be found. My husband is one tough guy and we will make it through
    this together.
    Guess I have rambled on long enough! More info than I am sure you bargained for!
    I will keep you all in my prayers. Good luck at UPMC!
    Cheryl
  • JimboC
    JimboC Member Posts: 264
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    Susie, I replied by message.
    Susie, I replied by message. I realized I forgot to put my age. I am 42. I strongly plan on making it to 43 in December and be cancer free. ;). I hope Brendon is doing alright.

    All the best,

    jc
  • linda1120
    linda1120 Member Posts: 389
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    Linda Lynch, caregiver
    Patient Jim Lynch, spouse
    T3NIMO
    Coeur d'Alene, Idaho
    Diagnosed September 7, 2010
    Cisplatin and 96 hr 5FU Infusion for 2 sessions one month apart
    Surgery at Oregon Health & Science University, Portland, Oregon
    Team of Surgeons including Dr. James Dolan, Dr. Paul Schipper,
    Dr. Hunter, and more! MIE
    Surgery on January 5, 2011 no evidence of disease, chemo & radiation did their job
    3 month Catscan NED!!!!!!

    I don't know where you find the time!!!!!!!!!!!
    You are both in my prayers,

    Linda
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
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    Ahhh, thank you thank you thank you
    SPREADSHEET - a form used by some over stressed, under paid, women to keep track of their lives. Typically created on a computer and saved for daily reminders for the women who just don't have enough storage space in their brains. Not to be confused with a BEDSPREAD or a BEDSHEET.


    If anyone would like a copy of this spreadsheet (and I would even share with the over stressed under paid men!), please let me know and I can email you a copy...that is...if you provided me with a home email address.


    I really do want to say thanks (after my lil msg to William!) to everyone that provided me their information. It really helped me keep a time log of who all was going to be in Pittsburgh around the time Brendon and I will be up there. I'm really looking forward to meeting some of you for real hugs...even though cyber hugs rank a close 2nd.

    Prayers to all my friends out there tonight who are battling this disease and to all my friends who have lost someone near and dear to them. Remember, they are now your guardian angels looking over you each and every day. (just remember how luck you are to have your very own angel).

    Susie