anyone hear from NCEllen?

nancy591
nancy591 Member Posts: 1,027 Member
in Ovarian Cancer #1
I remember she feared a recurrence. Anyone know anything?

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Sending you Ellen's email
    Sending you Ellen's email address via CSN.

    Carlene
  • NCEllen
    NCEllen Member Posts: 115
    #3
    When you have a No Hair Day......
    Dress like a pirate! OK - I'm here. Thank you Nancy for the 'yank' back to the net :).. and thank you Carlene for keeping the notion of 'falling off the face of the map' in the game of Whatever Happened To?? in the back of my mind.

    My laptop had to undergo a software infusion - infected by a virus when I let my guard down.

    I did have a recurrance diagnosed by CT the last week of Dec. Little implants all over the abd/pelivic area, but nothing on the major organs. I delayed my chemo start of repeat Carbo/Taxol until the 3rd week of Jan. as I was feeling well and wanted to help out at least one week with my daughter and new baby (a mother thing I couldn't give up). So my Ca125 was somewhere over 200. It skyrocketed from Aug. at 20 which was up from 3 last June.

    My doc. recommended a clinical study which would have also added Avastin to the Carb/Taxol, but the computer selection process didn't include me in that arm of the study. I actually was a little afraid of the Avastin side effects since the ileostomy/reversal and the obstruction in October. I'll take my chances later down the line if I need to. But for now I'll get 6-8 treatments depending on follow-up CT scans etc.

    I've had 2 treatments so far. 1st round found me terribly nauseated, unable to eat and 'runs' to the bathroom. I lost 6 lbs. My 2nd time around, they gave me Emend and Decadron which were wonder workers. I never lost my appetite, but my knees and legs hurt like hell 4-5 days after the chemo. Percocet helped with that. My Ca125 dropped to 31 and is now 14 after 2 tx., but my white count may be too low for #3 sched. Thursday. I will repeat the CBC that morning and see if it's a go or not. I understand that numbers don't rule the disease progression, but it's nice to hear them anyway. I know that I will always be treated off and on the rest of my life, hopefully more off han on. My doc told me to try some extra B6 for the neuropathy. Anyone else try that?

    I've invested in a couple of new 'hair hats' (my wigs). They are an easy way to do hair in a hurry.
    To all on this board - I'm sorry that we have newcomers, I'm sad for progresssions and really very hopefull for everyone who has new treatment options or who have at least stablized.

    If I've learned anything from all of you - when you feel good, even if for a couple of hours ENJOY that moment! .....time for a scoop of BlueBell ice cream. El
  • carolenk
    carolenk Member Posts: 907 Member
    #4
    NCEllen said:

    When you have a No Hair Day......
    Dress like a pirate! OK - I'm here. Thank you Nancy for the 'yank' back to the net :).. and thank you Carlene for keeping the notion of 'falling off the face of the map' in the game of Whatever Happened To?? in the back of my mind.

    My laptop had to undergo a software infusion - infected by a virus when I let my guard down.

    I did have a recurrance diagnosed by CT the last week of Dec. Little implants all over the abd/pelivic area, but nothing on the major organs. I delayed my chemo start of repeat Carbo/Taxol until the 3rd week of Jan. as I was feeling well and wanted to help out at least one week with my daughter and new baby (a mother thing I couldn't give up). So my Ca125 was somewhere over 200. It skyrocketed from Aug. at 20 which was up from 3 last June.

    My doc. recommended a clinical study which would have also added Avastin to the Carb/Taxol, but the computer selection process didn't include me in that arm of the study. I actually was a little afraid of the Avastin side effects since the ileostomy/reversal and the obstruction in October. I'll take my chances later down the line if I need to. But for now I'll get 6-8 treatments depending on follow-up CT scans etc.

    I've had 2 treatments so far. 1st round found me terribly nauseated, unable to eat and 'runs' to the bathroom. I lost 6 lbs. My 2nd time around, they gave me Emend and Decadron which were wonder workers. I never lost my appetite, but my knees and legs hurt like hell 4-5 days after the chemo. Percocet helped with that. My Ca125 dropped to 31 and is now 14 after 2 tx., but my white count may be too low for #3 sched. Thursday. I will repeat the CBC that morning and see if it's a go or not. I understand that numbers don't rule the disease progression, but it's nice to hear them anyway. I know that I will always be treated off and on the rest of my life, hopefully more off han on. My doc told me to try some extra B6 for the neuropathy. Anyone else try that?

    I've invested in a couple of new 'hair hats' (my wigs). They are an easy way to do hair in a hurry.
    To all on this board - I'm sorry that we have newcomers, I'm sad for progresssions and really very hopefull for everyone who has new treatment options or who have at least stablized.

    If I've learned anything from all of you - when you feel good, even if for a couple of hours ENJOY that moment! .....time for a scoop of BlueBell ice cream. El

    B6 for neuropathy
    I take 100mg B6 once/day for neuropathy. I also take 300mg of alpha lipoic acid (ALA) twice/day with food. I have only had 4 carbo treatments so far and the neuropathy is very brief and short-lived.

    ALA might cause problems if you have GERD or heartburn because it is mildly acidic.

    Hoping for the best for you,

    C
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #5
    carolenk said:

    B6 for neuropathy
    I take 100mg B6 once/day for neuropathy. I also take 300mg of alpha lipoic acid (ALA) twice/day with food. I have only had 4 carbo treatments so far and the neuropathy is very brief and short-lived.

    ALA might cause problems if you have GERD or heartburn because it is mildly acidic.

    Hoping for the best for you,

    C

    Clinical trials
    Ellen

    I feel similar to the way you feel about clinical trials. I don't know if I could do one.

    I admire the people who sign up for the research studies because we all benefit from the results of the research.

    I am really interested in the outcome of the vaccine trial. I contacted the Cancer Treatment Centers of America and heard that they offer the vaccine but you have to have it made from your own malignant cells.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #6
    LaundryQueen said:

    Clinical trials
    Ellen

    I feel similar to the way you feel about clinical trials. I don't know if I could do one.

    I admire the people who sign up for the research studies because we all benefit from the results of the research.

    I am really interested in the outcome of the vaccine trial. I contacted the Cancer Treatment Centers of America and heard that they offer the vaccine but you have to have it made from your own malignant cells.

    The vaccine trial I am in
    The vaccine trial I am in does not require "malignant cells". I think there are several, however, that do.

    The trial I am doing is at Memorial Sloan-Kettering in NYC. To qualify, you must be in your first remission. They will verify your remission via blood work and CT scan. Additionally, you must have been either sub-optimally debulked, or your CA125 after 3 rounds of platinum based chemo must have been elevated (over 55, I think).

    Send me a message if yoi want the phone number. The research physician is Dr. Paul Sabbatini.

    Carlene
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #7
    Hissy_Fitz said:

    The vaccine trial I am in
    The vaccine trial I am in does not require "malignant cells". I think there are several, however, that do.

    The trial I am doing is at Memorial Sloan-Kettering in NYC. To qualify, you must be in your first remission. They will verify your remission via blood work and CT scan. Additionally, you must have been either sub-optimally debulked, or your CA125 after 3 rounds of platinum based chemo must have been elevated (over 55, I think).

    Send me a message if yoi want the phone number. The research physician is Dr. Paul Sabbatini.

    Carlene

    vaccine trial
    I don't think I would qualify--yet. I was "optimally debulked" and am still in the first line of treatment and not officially in remission.

    thanks for sharing.
  • 123missy
    123missy Member Posts: 26
    #8
    NCEllen said:

    When you have a No Hair Day......
    Dress like a pirate! OK - I'm here. Thank you Nancy for the 'yank' back to the net :).. and thank you Carlene for keeping the notion of 'falling off the face of the map' in the game of Whatever Happened To?? in the back of my mind.

    My laptop had to undergo a software infusion - infected by a virus when I let my guard down.

    I did have a recurrance diagnosed by CT the last week of Dec. Little implants all over the abd/pelivic area, but nothing on the major organs. I delayed my chemo start of repeat Carbo/Taxol until the 3rd week of Jan. as I was feeling well and wanted to help out at least one week with my daughter and new baby (a mother thing I couldn't give up). So my Ca125 was somewhere over 200. It skyrocketed from Aug. at 20 which was up from 3 last June.

    My doc. recommended a clinical study which would have also added Avastin to the Carb/Taxol, but the computer selection process didn't include me in that arm of the study. I actually was a little afraid of the Avastin side effects since the ileostomy/reversal and the obstruction in October. I'll take my chances later down the line if I need to. But for now I'll get 6-8 treatments depending on follow-up CT scans etc.

    I've had 2 treatments so far. 1st round found me terribly nauseated, unable to eat and 'runs' to the bathroom. I lost 6 lbs. My 2nd time around, they gave me Emend and Decadron which were wonder workers. I never lost my appetite, but my knees and legs hurt like hell 4-5 days after the chemo. Percocet helped with that. My Ca125 dropped to 31 and is now 14 after 2 tx., but my white count may be too low for #3 sched. Thursday. I will repeat the CBC that morning and see if it's a go or not. I understand that numbers don't rule the disease progression, but it's nice to hear them anyway. I know that I will always be treated off and on the rest of my life, hopefully more off han on. My doc told me to try some extra B6 for the neuropathy. Anyone else try that?

    I've invested in a couple of new 'hair hats' (my wigs). They are an easy way to do hair in a hurry.
    To all on this board - I'm sorry that we have newcomers, I'm sad for progresssions and really very hopefull for everyone who has new treatment options or who have at least stablized.

    If I've learned anything from all of you - when you feel good, even if for a couple of hours ENJOY that moment! .....time for a scoop of BlueBell ice cream. El

    Blue Bell Ice Cream
    You must be in Texas although some places in NM are now getting it.

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