Fighting the beast again.

kikz

I don't come on here much.  I guess Facebook has me in it's clutches.  I am in treatment for my second recurrence.  It is going well.  After first chemo I had a 7-day stint in the hospital, 4 days in ICU.  My onc adjusted my chemo dosage (I wasn't aware that could be done) and has me take Neupogen for 7days following chemo.  This all made a big difference.  I was only sick for 3 or 4 days but just chemo sick, nothing I felt would send me to ER.  However my treatment was postponed last Tuesday because of low blood counts and she increased the Neupogen to 10 days.  We also have to watch my magnesium which tends to be low.  I have had 3 episodes of atrial fibrillation so I am on blood pressure meds.  I had my fourth infusion yesterday, carbo/taxol.  My CA 125 was 104 when I started and it was 14 last week.  So I hope another couple of infusions will do it.  I had chemo last year between May and July so it was a little shocking when the first CA 125 was already elevated only 4 months after treatment.  Thanks to Tamoxifen, we were able to delay treatment for 10 months.  I feel different this time.  Kind of angry that this b*stard won't leave me alone, hurt that the people in my life don't seem to remember I'm still alive.  But I also am kind of numb which is good so those other feelings don't bring me down.  I am mostly puzzled that my large extended family and my many friends have let me down.  I know all the reasons but...

Anyway I've gone on too long and before I get too maudlin and in case I don't get back here before the holidays, I want to wish you all, my original supporters, the toughest yet most caring women I know, the very best possible Christmas.  I love you all. 

scatsm

Dear Karen,

While I'm so glad you are on Facebook, I do miss your posts here! I totally get the part about people fading. The difference in support between the first and second time for me is a bit scary....I guess I'll be going it alone for round 3. I do go to 2 monthly support groups...one is informational and one is a networking group so I have met people who "get it" in my community. I am also doing some volunteer work for SLOCA (St Louis Ovarian Cancer Assn).  This is a national org and there may be one where you live. That too has been awesome. 

I also feel like this board was my first support group and I'm going to try to stick with it. 

Alexandra, you've been a bit MIA ....please keep us in the loop. What's happening with your treatment?

much love,

Susan

Alexandra

Good to hear from you Karen and Susan

I hear what you're saying about decrease in support from friends and family, I am experiencing the same thing. By now (in my case 2.5 years since diagnosis) cancer is old news and no one wants to know about it. Any such discussion is percieved as negative attitude. We are expected to grin and bear, pull our weight, etc. etc.

I am still on the PARP trial, for 9 months so far. My CA125 has been going up for the last 2 months, but until CT scan shows evidence of 20% tumor growth, I am going to stay on the drug. I don't have any symptoms or side effects and feel a little fatigued but overall fine.

After I get removed from the trial in a couple of months, I will probably be offered to repeat Carbo / Taxol. I don't want any more chemo and I don't have a plan B. Well, I'll cross that bridge when I get to it.

I wish you and your loved ones very Happy holidays and a healthy New Year.

Hugs,

Alexandra

lovesanimals

Alexandra said:

Good to hear from you Karen and Susan

I hear what you're saying about decrease in support from friends and family, I am experiencing the same thing. By now (in my case 2.5 years since diagnosis) cancer is old news and no one wants to know about it. Any such discussion is percieved as negative attitude. We are expected to grin and bear, pull our weight, etc. etc.

I am still on the PARP trial, for 9 months so far. My CA125 has been going up for the last 2 months, but until CT scan shows evidence of 20% tumor growth, I am going to stay on the drug. I don't have any symptoms or side effects and feel a little fatigued but overall fine.

After I get removed from the trial in a couple of months, I will probably be offered to repeat Carbo / Taxol. I don't want any more chemo and I don't have a plan B. Well, I'll cross that bridge when I get to it.

I wish you and your loved ones very Happy holidays and a healthy New Year.

Hugs,

Alexandra

Dear Karen, Susan and Alexandra

Please know that I'm sending you ladies and the others battling this beast lots of warm hugs and love.  Karen, it is so nice to hear from you.  I don't understand why the support of family and friends is decreasing with recurrences. One thing I do know.  The support of women who have walked in our shoes is unwaivering. 

Wishing all of us the best of the holiday season and a happy and healthy 2015.

Kelly

wholfmeister

So sorry!

I am so sorry you are facing this all over again!

i have been in treatment, getting one chemo after another since March 2012.  The CA 125 goes down close to normal, than right back up.  A few pelvic lymph nodes continue to slowly grow and multiply.  No one has ever mentioned remission, or recurrence, just changing chemo agents.  So, I am very tired of it all, and my wonderful family and friends also suffer from battle fatigue.  

My hair has been growing since spring, so most observers think, She has hair! She is cured!....why is she still taking off so much time from work?!  

I'm not the most public person, so those not close by probably think all is well, because I try not to publicly complain. I don't announce on Facebook every chemo day or test result. People just don't know, and their lives are busy, and they just quit asking....

So, all I can do is assure you....it's normal and it sucks!  And yes, all the women on this board understand and hurt along with you.  Just know, all along, all the strength you need for this fight is right there inside of you.

Blessed Hanukah and Merry Christmas to all!

kate1313

wholfmeister said:

So sorry!

I am so sorry you are facing this all over again!

i have been in treatment, getting one chemo after another since March 2012.  The CA 125 goes down close to normal, than right back up.  A few pelvic lymph nodes continue to slowly grow and multiply.  No one has ever mentioned remission, or recurrence, just changing chemo agents.  So, I am very tired of it all, and my wonderful family and friends also suffer from battle fatigue.  

My hair has been growing since spring, so most observers think, She has hair! She is cured!....why is she still taking off so much time from work?!  

I'm not the most public person, so those not close by probably think all is well, because I try not to publicly complain. I don't announce on Facebook every chemo day or test result. People just don't know, and their lives are busy, and they just quit asking....

So, all I can do is assure you....it's normal and it sucks!  And yes, all the women on this board understand and hurt along with you.  Just know, all along, all the strength you need for this fight is right there inside of you.

Blessed Hanukah and Merry Christmas to all!

We all understand

I too am going thru this.  My family and friends seem to think that afte a year + everything is okay - after all my CA125 got down to 14 so I must be all better.  Unfortunately a month later more cancer was found and the numbers shot right up.  I don't understand how the CA125 could register so low then jump up so quickly, but it is what it is.  It's hard when family/friends don't understand that we are still fighting this monster every day.  They seem to expect us to feel happy, perky, full of energy and so on.  Particularly hard at the holidays, with all the decorating, shopping, etc. that we just get too tired to do.  To all of you, know that you are in my thoughts and prayers and that we are all each other's support mechanisms. 

Kathy

kate1313

kate1313 said:

We all understand

I too am going thru this.  My family and friends seem to think that afte a year + everything is okay - after all my CA125 got down to 14 so I must be all better.  Unfortunately a month later more cancer was found and the numbers shot right up.  I don't understand how the CA125 could register so low then jump up so quickly, but it is what it is.  It's hard when family/friends don't understand that we are still fighting this monster every day.  They seem to expect us to feel happy, perky, full of energy and so on.  Particularly hard at the holidays, with all the decorating, shopping, etc. that we just get too tired to do.  To all of you, know that you are in my thoughts and prayers and that we are all each other's support mechanisms. 

Kathy

I just wanted to wish all of

I just wanted to wish all of you ladies a happy Christmas.  I know how hard it is when you're sick and family and friends don't seem to understand that the second (or more) time is just as scary and bad as the first go round.  Just want to let you all know that I was thinking of you and sending positive thoughts and prayers your way on this Christmas Day.  Merry Christmas, all!  Kathy