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Linda how are you doing and feeling?

hopeful girl 1
hopeful girl 1 Member Posts: 454
edited March 2014 in Uterine Cancer #1
Linda,

How are you doing and feeling?

Just checking in on you.

Cindy

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    How sweet of you to check on me!
    Today is 1 week since my 3rd Doxi infusion. The rash on my torso is almost gone, thanks to Rx steroid cream, and I only have a few itchy bumps on the inside of my knees where they touch when I sleep and on the base of my hands where they rest on the keyboard. Only the first few days after my treatments are at all bad. The 1st couple days after my Nuelasta shot these last 2 rounds I had some scary shivery pulsing pain that would suddenly waft up my spine, almost bringing tears to my eyes. It would only last a few seconds and I could usually make it stop by just standing up or straightening up. But I'd be left with a dull headache. And then by the 3rd day after the Nuelasta shot, it disappears and does not return. And I fight off constipation the first few days after my treatments with lots off fiber and stool softeners and prune juice that make me feel queezy too. But again, 4 days after chemo I feel great again. In fact, last night, 5 days after my last infusion, I went to a Joe Bonamosso rock concert!

    This IS a scary month for me. I get my CT/PET in 11/29, pretty terrifying since my CA125 has been so high, rising even though I'm in chemo (181 at last labs). & I get my 3-month routine internal exam 12/06 and Fran's vaginal cuff recurrence reminds me that brachy doesn't guarantee I'm safe there. There's no use 'borrowing trouble' with worry when there's GOOD TIMES to be had!

    On a very sad note, my little sweet bunny died yesterday as a complication of bowel obstruction surgery. I miss her sweet little self.

    And ending on a bright note, I got my 1st SS Disabiity $$ today. That's my update. Thanks for asking! (((Cindy)))
  • maggie_wilson
    maggie_wilson Member Posts: 596

    How sweet of you to check on me!
    Today is 1 week since my 3rd Doxi infusion. The rash on my torso is almost gone, thanks to Rx steroid cream, and I only have a few itchy bumps on the inside of my knees where they touch when I sleep and on the base of my hands where they rest on the keyboard. Only the first few days after my treatments are at all bad. The 1st couple days after my Nuelasta shot these last 2 rounds I had some scary shivery pulsing pain that would suddenly waft up my spine, almost bringing tears to my eyes. It would only last a few seconds and I could usually make it stop by just standing up or straightening up. But I'd be left with a dull headache. And then by the 3rd day after the Nuelasta shot, it disappears and does not return. And I fight off constipation the first few days after my treatments with lots off fiber and stool softeners and prune juice that make me feel queezy too. But again, 4 days after chemo I feel great again. In fact, last night, 5 days after my last infusion, I went to a Joe Bonamosso rock concert!

    This IS a scary month for me. I get my CT/PET in 11/29, pretty terrifying since my CA125 has been so high, rising even though I'm in chemo (181 at last labs). & I get my 3-month routine internal exam 12/06 and Fran's vaginal cuff recurrence reminds me that brachy doesn't guarantee I'm safe there. There's no use 'borrowing trouble' with worry when there's GOOD TIMES to be had!

    On a very sad note, my little sweet bunny died yesterday as a complication of bowel obstruction surgery. I miss her sweet little self.

    And ending on a bright note, I got my 1st SS Disabiity $$ today. That's my update. Thanks for asking! (((Cindy)))

    linda, i've been thinking of you as well, so glad you responded
    what you're going through doesn't sound terrible, but doesn't sound so great either. i'm glad your rash and itchy bumps are almost gone, and i'm happy that for the most part it sounds like your staving off constipation--to me that is the very worst. those shivery pains sure don't sound like fun, glad they don't last long. have you heard of others having them as well from the nuelasta shots? the amazing thing is how great you feel 4 days later, that is a blessing. how many more infusions are you scheduled for? hope you're at least half way through.

    this is a scary month for me as well--getting my first ca 125 in 6 months, then depending upon the numbers, a ct/pet scan or not. i'm hoping for the best outcome for both of us, linda--low numbers for me, and clear scan for you.

    i'm sorry about your little bunny; it's surprising how those sweet animals just win your heart.

    yea! re: your disability. i get social security, and every month it feels like free money......not that we haven't earned every penny.....

    you're so right about not "borrowing trouble," but that's so hard not to do; doing my best not to, however.

    hugs and sisterhood,
    maggie
  • Kaleena
    Kaleena Member Posts: 2,059

    linda, i've been thinking of you as well, so glad you responded
    what you're going through doesn't sound terrible, but doesn't sound so great either. i'm glad your rash and itchy bumps are almost gone, and i'm happy that for the most part it sounds like your staving off constipation--to me that is the very worst. those shivery pains sure don't sound like fun, glad they don't last long. have you heard of others having them as well from the nuelasta shots? the amazing thing is how great you feel 4 days later, that is a blessing. how many more infusions are you scheduled for? hope you're at least half way through.

    this is a scary month for me as well--getting my first ca 125 in 6 months, then depending upon the numbers, a ct/pet scan or not. i'm hoping for the best outcome for both of us, linda--low numbers for me, and clear scan for you.

    i'm sorry about your little bunny; it's surprising how those sweet animals just win your heart.

    yea! re: your disability. i get social security, and every month it feels like free money......not that we haven't earned every penny.....

    you're so right about not "borrowing trouble," but that's so hard not to do; doing my best not to, however.

    hugs and sisterhood,
    maggie

    Linda and Maggie
    Linda, I am glad to hear you are feeling good enough to attend a concert! Sorry about the pain, though. Hope it goes away quickly. I am also sorry to hear about your bunny. Hoping all goes well with your PET/CT Scan on the 29th. Great news on your disability!
    (kinda feels like a rollercoaster, doesn't it?)

    Maggie: Looking and praying for low numbers for you. Sending hugs your way for your appointment. I just had my six month check-up and exam, then a week later a PET scan. You would think it would get easier, but I felt very uneasy even though my initial diagnosis was 5 years ago. Then it was the waiting for the results. I don't know why I was so nervous this time. Anyway, it was all good for another six months! Enough about me, sending comforting thoughts your way. Let me know.

    In the meantime, may all have a blessed, happy Thanksgiving!

    Hugs and sisterhood,

    Kathy
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kaleena said:

    Linda and Maggie
    Linda, I am glad to hear you are feeling good enough to attend a concert! Sorry about the pain, though. Hope it goes away quickly. I am also sorry to hear about your bunny. Hoping all goes well with your PET/CT Scan on the 29th. Great news on your disability!
    (kinda feels like a rollercoaster, doesn't it?)

    Maggie: Looking and praying for low numbers for you. Sending hugs your way for your appointment. I just had my six month check-up and exam, then a week later a PET scan. You would think it would get easier, but I felt very uneasy even though my initial diagnosis was 5 years ago. Then it was the waiting for the results. I don't know why I was so nervous this time. Anyway, it was all good for another six months! Enough about me, sending comforting thoughts your way. Let me know.

    In the meantime, may all have a blessed, happy Thanksgiving!

    Hugs and sisterhood,

    Kathy

    thanx so much, kathy
    geeze, even after 5 years, it can still get to you... still, that's so wonderful it's been 5 years, and it's still all good. may it ever be so. thank you so much for your positive thoughts and good wishes for me. i really appreciate them.

    hugs and sisterhood back to you,
    maggie
  • Always Hopeful
    Always Hopeful Member Posts: 234
    Kaleena said:

    Linda and Maggie
    Linda, I am glad to hear you are feeling good enough to attend a concert! Sorry about the pain, though. Hope it goes away quickly. I am also sorry to hear about your bunny. Hoping all goes well with your PET/CT Scan on the 29th. Great news on your disability!
    (kinda feels like a rollercoaster, doesn't it?)

    Maggie: Looking and praying for low numbers for you. Sending hugs your way for your appointment. I just had my six month check-up and exam, then a week later a PET scan. You would think it would get easier, but I felt very uneasy even though my initial diagnosis was 5 years ago. Then it was the waiting for the results. I don't know why I was so nervous this time. Anyway, it was all good for another six months! Enough about me, sending comforting thoughts your way. Let me know.

    In the meantime, may all have a blessed, happy Thanksgiving!

    Hugs and sisterhood,

    Kathy

    Kathy
    Congrats on your five year "All Good"...

    Peace and hope, JJ
  • maggie_wilson
    maggie_wilson Member Posts: 596

    linda, i've been thinking of you as well, so glad you responded
    what you're going through doesn't sound terrible, but doesn't sound so great either. i'm glad your rash and itchy bumps are almost gone, and i'm happy that for the most part it sounds like your staving off constipation--to me that is the very worst. those shivery pains sure don't sound like fun, glad they don't last long. have you heard of others having them as well from the nuelasta shots? the amazing thing is how great you feel 4 days later, that is a blessing. how many more infusions are you scheduled for? hope you're at least half way through.

    this is a scary month for me as well--getting my first ca 125 in 6 months, then depending upon the numbers, a ct/pet scan or not. i'm hoping for the best outcome for both of us, linda--low numbers for me, and clear scan for you.

    i'm sorry about your little bunny; it's surprising how those sweet animals just win your heart.

    yea! re: your disability. i get social security, and every month it feels like free money......not that we haven't earned every penny.....

    you're so right about not "borrowing trouble," but that's so hard not to do; doing my best not to, however.

    hugs and sisterhood,
    maggie

    linda, i must have missed a chapter
    sounds like you have a new diagnosis, and not upsc. is that making a difference in your treatment? i've read some of your later posts which answered some of my previous questions, though do wonder if you're latest chemo means your last chemo, or if that's dependent upon ct/pet scan, which probably it is. you're certainly right, that everyone's recurrence seems different, and treatment for each seems very much individualized. it does sound like a very good idea if one has a recurrence with recommended treatment, to get at least a second opinion, if not a third. back to it being a crap shoot.....

    sisterhood,
    maggie
  • Kaleena
    Kaleena Member Posts: 2,059

    Kathy
    Congrats on your five year "All Good"...

    Peace and hope, JJ

    Thank you JJ.
    I did have

    Thank you JJ.

    I did have recent surgery in February which turned out all good. I didn't realize it was considered a "recurrence" until I read the recent medical report. I had a positive biopsy, but when they removed the tumor, it was negative!

    Thanks again.

    Have a great Thanksgiving!

    Kathy
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454

    linda, i must have missed a chapter
    sounds like you have a new diagnosis, and not upsc. is that making a difference in your treatment? i've read some of your later posts which answered some of my previous questions, though do wonder if you're latest chemo means your last chemo, or if that's dependent upon ct/pet scan, which probably it is. you're certainly right, that everyone's recurrence seems different, and treatment for each seems very much individualized. it does sound like a very good idea if one has a recurrence with recommended treatment, to get at least a second opinion, if not a third. back to it being a crap shoot.....

    sisterhood,
    maggie

    Linda
    Hugs to you. Glad you were able to get out and enjoy. Sorry about those pains-glad they are short lasting.

    Cindy
  • Ro10
    Ro10 Member Posts: 1,561

    How sweet of you to check on me!
    Today is 1 week since my 3rd Doxi infusion. The rash on my torso is almost gone, thanks to Rx steroid cream, and I only have a few itchy bumps on the inside of my knees where they touch when I sleep and on the base of my hands where they rest on the keyboard. Only the first few days after my treatments are at all bad. The 1st couple days after my Nuelasta shot these last 2 rounds I had some scary shivery pulsing pain that would suddenly waft up my spine, almost bringing tears to my eyes. It would only last a few seconds and I could usually make it stop by just standing up or straightening up. But I'd be left with a dull headache. And then by the 3rd day after the Nuelasta shot, it disappears and does not return. And I fight off constipation the first few days after my treatments with lots off fiber and stool softeners and prune juice that make me feel queezy too. But again, 4 days after chemo I feel great again. In fact, last night, 5 days after my last infusion, I went to a Joe Bonamosso rock concert!

    This IS a scary month for me. I get my CT/PET in 11/29, pretty terrifying since my CA125 has been so high, rising even though I'm in chemo (181 at last labs). & I get my 3-month routine internal exam 12/06 and Fran's vaginal cuff recurrence reminds me that brachy doesn't guarantee I'm safe there. There's no use 'borrowing trouble' with worry when there's GOOD TIMES to be had!

    On a very sad note, my little sweet bunny died yesterday as a complication of bowel obstruction surgery. I miss her sweet little self.

    And ending on a bright note, I got my 1st SS Disabiity $$ today. That's my update. Thanks for asking! (((Cindy)))

    Linda glad to read your update
    Glad you have gotten your 3rd Doxil treatment. Hope you did not have as much discomfort the first few days following it. I had the type of pain you described from the Neupogen shots I got in the hospital, and then again with the Neulasta shots after chemo 5. Before chemo 6 I took Claritin before the chemo and 4 days after the chemo. I did not get the pain after the Neulasta shot. I read somewhere that Claritin would reduce the pain. It worked for me, you might want to try it. My onocologist said she had not heard of that, but it would not hurt me, so I tried it.

    Glad you got to go to a concert and enjoyed it. Sorry to hear about you bunny. I know you have talked about the enjoyment the bunny gave you. Congratulations on getting your disability check.

    Good lick with your CT/PET and internal exam. At least they are after Thanksgiving and you can make those great memories for you sons and grandchildren. Enjoy that pumpkin pie in the morning. In peace and caring.
  • Sara Zipora
    Sara Zipora Member Posts: 231

    How sweet of you to check on me!
    Today is 1 week since my 3rd Doxi infusion. The rash on my torso is almost gone, thanks to Rx steroid cream, and I only have a few itchy bumps on the inside of my knees where they touch when I sleep and on the base of my hands where they rest on the keyboard. Only the first few days after my treatments are at all bad. The 1st couple days after my Nuelasta shot these last 2 rounds I had some scary shivery pulsing pain that would suddenly waft up my spine, almost bringing tears to my eyes. It would only last a few seconds and I could usually make it stop by just standing up or straightening up. But I'd be left with a dull headache. And then by the 3rd day after the Nuelasta shot, it disappears and does not return. And I fight off constipation the first few days after my treatments with lots off fiber and stool softeners and prune juice that make me feel queezy too. But again, 4 days after chemo I feel great again. In fact, last night, 5 days after my last infusion, I went to a Joe Bonamosso rock concert!

    This IS a scary month for me. I get my CT/PET in 11/29, pretty terrifying since my CA125 has been so high, rising even though I'm in chemo (181 at last labs). & I get my 3-month routine internal exam 12/06 and Fran's vaginal cuff recurrence reminds me that brachy doesn't guarantee I'm safe there. There's no use 'borrowing trouble' with worry when there's GOOD TIMES to be had!

    On a very sad note, my little sweet bunny died yesterday as a complication of bowel obstruction surgery. I miss her sweet little self.

    And ending on a bright note, I got my 1st SS Disabiity $$ today. That's my update. Thanks for asking! (((Cindy)))

    Wishes and prayers for your recovery
    Dear Warriorettes,

    I can't tell you how grateful I am having found you, group of strength, compassion,warmth, and healing.  Your individual and combined strength energizes me like that EverReady Bunny, so sorry to hear Linda that your flesh and blood Bunny died.

    I have just come thru a cloud of decision making.  My Doc feels that the four rounds of weekly Taxol with the addition of monthly Carbo, did its thing.  I have some neuropathy in hands and feet, ants crawling on hands and tetany ( fingers sticking together for a time), my Ca is down from pre op 94 on July 15, 2010 to 84 post everything out, out, out and Staging Endometrium Ca Clear IV B, to 8.4 two months ago and 6.2 last week. CT fine, internal gyno ultrasound ok, bloods low but manageable, two transfusions plus iron IV.  No PET as yet.

    He proposed changing the protocol after the four series and going onto Doxil/Carbo once every four weeks for two rounds, then doing Anti Hormone , I have high progesterone and estrogen, then maybe Avastin-- he doesn't like Avastin for me?
    Then PET- cause I keep asking for it as per your posts.

    Anyway he left the final decision up to me if to stay on the road of six taxol/ Carbos or go off into this 'uncharted' territory.  He said he'll consult and so should I-- I must say his attitude change a result is long ' hard fought' emails where I refused to be an easy patient, one who accepts do or die (me!) without annoyingly asking WHY?
    Anyway, he left final decision up to me--  eeeeks! I've only been an oncologist with one case-me- since July!
    So I read, emailed four other specialists, I live way outside US, and of course read you, The Warriorettes' posts.

    Bottom line, with my exact Dx, Stage IV B Clear, no Thank Gd, visible anthings, just beastly microscopic monsters, there is pitiful little published research of Tx.  The Protocol used is Ovarian Ca, not Endometrial specific.
    Also my Doc was one of Doxil 'inventors', and knows its strengths and I hope, weaknesses to tweak it for me.
    Three to one the specialists said stay with 'tried and true' six rounds, it works don't stop at four.  One Doc said the only thing that's changing is instead of two more Taxols you'll be getting two Doxils because Carbo is staying.

    The attitude change I saw in my Doc was going from
        treat- and wait for recurrence- and save our WMD weapons of mass          destruction, and treat again,
    To
    Maybe we have a chance of a cure if we give it all we've got now and not expect recurrence.
    Sooo even though it was three to one against changing horses in mid ride, I was edging toward proactive, not behaving as expected, way.
    Friday I spoke with an 'Outlier' type of person, not a medical man but a recognized Guru in medical matters and he said go with it, no one is better placed to treat with Doxil mixes than this doc who was in on its development and is 'invested' in its success for you his Pt.
    Also no one in the world can say they have a realistic, statistically relevant, number of patients with my Dx to give validity to any specific other Tx.

    Sooo, I'm going for this 'stop at four' protocol and go Doxil/Carbo for 'cure', however long or short that is in my bailiwick, playing field, now.
    I am optimistic but realistic.

    Thanks Linda for all the Doxil prep, only thing is:
     how long and when to ice? 
    when to cream?
    When to Mumu, no underwear?
    When yes able To Type? walk on feet?

    Thank you all for being there,
    Sara Zipora   
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408

    How sweet of you to check on me!
    Today is 1 week since my 3rd Doxi infusion. The rash on my torso is almost gone, thanks to Rx steroid cream, and I only have a few itchy bumps on the inside of my knees where they touch when I sleep and on the base of my hands where they rest on the keyboard. Only the first few days after my treatments are at all bad. The 1st couple days after my Nuelasta shot these last 2 rounds I had some scary shivery pulsing pain that would suddenly waft up my spine, almost bringing tears to my eyes. It would only last a few seconds and I could usually make it stop by just standing up or straightening up. But I'd be left with a dull headache. And then by the 3rd day after the Nuelasta shot, it disappears and does not return. And I fight off constipation the first few days after my treatments with lots off fiber and stool softeners and prune juice that make me feel queezy too. But again, 4 days after chemo I feel great again. In fact, last night, 5 days after my last infusion, I went to a Joe Bonamosso rock concert!

    This IS a scary month for me. I get my CT/PET in 11/29, pretty terrifying since my CA125 has been so high, rising even though I'm in chemo (181 at last labs). & I get my 3-month routine internal exam 12/06 and Fran's vaginal cuff recurrence reminds me that brachy doesn't guarantee I'm safe there. There's no use 'borrowing trouble' with worry when there's GOOD TIMES to be had!

    On a very sad note, my little sweet bunny died yesterday as a complication of bowel obstruction surgery. I miss her sweet little self.

    And ending on a bright note, I got my 1st SS Disabiity $$ today. That's my update. Thanks for asking! (((Cindy)))

    Linda & Maggie
    Sending along some positive energy for continued improvements and great test outcomes.

    Linda so sorry to hear about the loss of your Bunny...their presence is such a joy and when we lose them it hurts so much :*

    Hang in and keep enjoying life's special moments..

    Laurie