Our cancer "ordeal" blog

Elarsen
Elarsen Member Posts: 9
edited March 2011 in Ovarian Cancer #1
I asked my husband to keep a running blog of my ovarian, stage 4 cancer treatment. I told him to hold nothing back and tell it like it is. I am hoping that it will help someone about to start the treatment process to know what to expect, and maybe learn some things sooner than we did. Good luck to everyone out there and remember: The statistics are garbage so don't read into them! Most were compiled in 2006 from data from the early 2000's! Treatments are better, you can choose to eat better and live better. There is no reason to think this can't be a "manageable" illness! I truly believe that the right frame of mind and living right can make all the difference, so no "woe is me" girls, you will live long and well!

www.ourovariancancertrip.com

Joan

Background:

Diagnosed Stage 4 December, 2010. De-bulked early January. Clinical trial of Taxol by IV and Avastin day 1, Cisplatin IP day 2 and Taxol IP day 8. Skip one week and cycle starts again.

CA-125:

1,428 at diagnosis.

Started eating only organic and supplemented with Oncomar and Immpower mushroom extract per hospital dietitian recommendation. Cut out all sugar where could.

Dropped to CA-125 of 408 three weeks after de-bulking surgery.

Dropped to 78 just before first chemo treatment.
Dropped to 29 just before 2nd chemo cycle.
Dropped to 20 just before third chemo cycle.

Currently completing cycle 3.

Comments

  • taiga
    taiga Member Posts: 75
    It sounds like you are in
    It sounds like you are in the same arm of clinical trial GOG-0252 that I am. I finished all the chemo on December 8th and am doing the Avastin maintenance. I was dx. July 2010 with stage 3, grade 3 clear cell. The IP is uncomfortable, but tolerable. I was in really good shape when I was dx. so I think I tolerated the chemo pretty well. I think having a sense of humor and a positive outlook were huge reasons I did as well as I did. You absolutely can't wrapped up in percentages, etc. I got lots of pre-meds and was sent home with Zofran and Emend, so I had NO nausea at all during chemo. I did have the neuopathy in my left foot, and that hasn't gone away. I took L-glutamine and I think it helped keep it from progressing too much. My "bad weekend" was after my IV Taxol on Wednesday and IP Cisplatin on Thursday. Towards the end, I was pretty much in bed from Friday evening through most of Saturday. It definitely does build up and take longer to rebound. I worked the whole time, except for my treatment days, but left at 3:00. Good luck to you - it sound like you have a great attitude. I'll check out your blog!
  • Elarsen
    Elarsen Member Posts: 9
    taiga said:

    It sounds like you are in
    It sounds like you are in the same arm of clinical trial GOG-0252 that I am. I finished all the chemo on December 8th and am doing the Avastin maintenance. I was dx. July 2010 with stage 3, grade 3 clear cell. The IP is uncomfortable, but tolerable. I was in really good shape when I was dx. so I think I tolerated the chemo pretty well. I think having a sense of humor and a positive outlook were huge reasons I did as well as I did. You absolutely can't wrapped up in percentages, etc. I got lots of pre-meds and was sent home with Zofran and Emend, so I had NO nausea at all during chemo. I did have the neuopathy in my left foot, and that hasn't gone away. I took L-glutamine and I think it helped keep it from progressing too much. My "bad weekend" was after my IV Taxol on Wednesday and IP Cisplatin on Thursday. Towards the end, I was pretty much in bed from Friday evening through most of Saturday. It definitely does build up and take longer to rebound. I worked the whole time, except for my treatment days, but left at 3:00. Good luck to you - it sound like you have a great attitude. I'll check out your blog!

    Nauesa
    Oh how I wish I could say the nausea wasn't a problem for me! You are so lucky (if any of us can say anything with the word "luck" in it!) as this is by far the worst side-effect I have experienced. I am also on the Emend, Sancuso Patch. The Emend seems to work but they only gave it to me for 3 days, then I switch to the patch, which does not seem to work very well. Do you take the Emend for just 3 days as well?

    Congratulations on finishing and you are a true warrior for working through all of that misery! It still seems like such a long road ahead, even though I am half-way through, but it is heartening to hear someone has gone "the distance"!

    Joan
  • taiga
    taiga Member Posts: 75
    Elarsen said:

    Nauesa
    Oh how I wish I could say the nausea wasn't a problem for me! You are so lucky (if any of us can say anything with the word "luck" in it!) as this is by far the worst side-effect I have experienced. I am also on the Emend, Sancuso Patch. The Emend seems to work but they only gave it to me for 3 days, then I switch to the patch, which does not seem to work very well. Do you take the Emend for just 3 days as well?

    Congratulations on finishing and you are a true warrior for working through all of that misery! It still seems like such a long road ahead, even though I am half-way through, but it is heartening to hear someone has gone "the distance"!

    Joan

    Yes, I only took Emend on
    Yes, I only took Emend on the two days after the taxol treatments. I also believe they gave me Emend as part of my pre-chemo "cocktail". Then I loaded up on Zofran for the bad weekend. I think cycle 4 was my worse. I actually started taking Hydrocodone on that Friday evening before the pain would wake me up - I had horrible joint and body aches and started getting a nice headache along with all that by cycle 4. It was pretty much worn off so I could go to work that Monday morning. Keep on trudging through it. My CA-125 is down to 7.7 and I get an Avastin treatment this Wednesday.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Hi Elarsen
    Thank you for posting your story. I am stage 4 PPC and my CA 125 was 1,080 when I was diagnosed. I was very fit when I was diagnosed and I tolerated taxol/carbo really well only having very slight nausea and fatigue. I was diagnosed Nov 09 and unfortunately with a stage 4 diagnosis it recurred. So I am on the chemo again.

    I don't follow a particular diet and eat what I fancy which strangely enough is vegetables, fruit, meat etc. I find any processed food tastes aweful so I stir clear of it. I used to be a runner and a swimmer and am soc frustrated because I don't have the energy at the moment to do it.

    I now have a different attitude to this cancer. It is a chronic condition that can be managed with chemo. In between chemo I need to keep well and healthy so my body can continue to tolerate the chemo for when I have to have the next one. My recent scan was good and the cancer seems to be stable - so this is as good as it gets and I have come to appreciate that.

    I will look up your blog. Take care Tina xxx
  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    Thanks for your upbeat post
    Joan,
    This post is great. I know how terrifying this disease is, but I wish there were more positive posts here. Many sources indicate that multiple variables contribute to length of survivability, and attitude is one of them. Our bodies have an uncanny way of proving our minds right, regardless of what we focus on.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    Tethys41 said:

    Thanks for your upbeat post
    Joan,
    This post is great. I know how terrifying this disease is, but I wish there were more positive posts here. Many sources indicate that multiple variables contribute to length of survivability, and attitude is one of them. Our bodies have an uncanny way of proving our minds right, regardless of what we focus on.

    Whatever you think, you're right.
    Might or might not be true but what if it is?