Trying to get to remission

[kynthos]

I'm looking for information or advice.

I've been on chemo since April 2004 (after surgery March 20040. Did 8 rounds of carboplatinum/paclitaxel, which brought my CA125 from 1771 down to 129. [Was almost 17,000 pre-surgery]

At 129 in Oct. 2004, my doc. offered to put me on tamoxifen, to stabilize the CA125, and possibly even lower it. I counteroffered, asking to stay on taxol and to get it weekly. It's not really consolidation, more like just continued first line treatment, I guess.

Since October, it's gone down from 129 to 43 as of two weeks ago. But it bounced up to 50 last week, and as of yesterday it's 48. My last CT scan, in mid-December, shows no evidence of disease (or at least what is showing could be scar tissue, according to my doc.)

I am still desperately hoping to get it down to low teens or single digits; I really want a remission, though I am realistic enough to know that, under these circumstances, it probably wouldn't last long.

I'm trying to decide how long to stay on the taxol, whether I should just keep going, or whether it's time to through in the towel, accept no remission, take a break and just expect to go back on chemo soon. The weekly taxol makes me feel kind of gross, but I haven't had bad side effects at all - very little neuropathy, which so far has been tolerable.

Anyone else had a similar experience? What did you do? What would you do in my shoes?

- Cynthia

[dian07]

Hey there, big guy!  I want to thank you for your post because you gave us new info that is helpful.....once again I want to tell you how much I appreciate the  attention you give to us......you are an amazing, generous and compassionate friend.  Thank you .
Peace.
dian

P.S.  What are you doing these days that will not allow you to pay as much attention to us?  Don't you dare go away.

[crecco]

  I had started a response too until I read yours Jan. I guess that I need to pay more attention too.
  But on a good note. I think that I know Cynthia from another forum, as the name and screen name are the same. I have actually chatted with her on several occasions. So if it is the same one, she is still around and doing well.
        Chris

[Jan214]

Cynthia is probably no longer with us or she would probably have written something since 2005.

[alanpvegas]

hahahaha I didn't even notice that!  (note to self:  no more late night posts!)

[shewrites]

Ah, guys.  The original post (Cynthia/kynthos) went up in January 2005 -- four years ago!  Jane ought to start a fresh thread.  

[alanpvegas]

I actually think it's fantastic you went so long on Taxol!  While you want to get it to your teens, your NED (No Evidence of Disease) and under 50 CA125 is quite impressive.

I'd say stay on Taxol if you can tolerate it and your CA125 and NED continues or improves.  If you go off it, look into Doxil and a drug to combine it (I'll include some in this post)...might work well.  But first things first, if you are on one agent and going this long on it...with NED...keep those buggers trying to 'adapt' to that one and when they do, double whammy them with a brand new thing!


- Doxil and Paraplatin (38% response rate) (Reference: Ferrero J-M, Weber B Geay J-F, et al. second-line chemotherapy with pegylated liposomal doxorubicin and carboplatin is highly effective in patients with advanced ovarian cancer in late relapse: A GINCO phase II trial. Annals of Oncology 2006; published on-line as doi:10.1093/annonc/md376.)

- Doxil and Gemzar (Disease control was 63%) (Reference:  Mutch DG, Oriando M, Goss T, et al. Randomized phase III trial of gemcitabine compared with pegylated liposomal doxorubicin in patients with platinum-resistant ovarian cancer. Journal of Clinical Oncology. 2007; 19:2811-2818.)

and my favorite combination:

- Doxil and Eloxatin (Overall response rate of 68%) (Reference: Recchia F, Saggio G, Amiconi G, et al. A multicenter Phase II study of pegylated liposomal doxorubicin and oxaliplatin in recurrent ovarian cancer. Gynecologic Oncology. 2007; 106:164-169.)  

[Jane644]

I, too, have a pretty long history with ovarian cancer.  To sum up, I am 64 yrs. old, my CA-125 has always been below 35.   I've had three surgeries and there rounds of chemo and am now in remission.  The first surgery was in Jan 1997 - biopsy of an ovarian cyst showed some pre-cancerous cells and they did a total hysterectomy.  No chemo or other follow up.  Eight years later, vaginal bleeding indicated a recurrence.  Surgery (this time by a GYN/Oncology/Surgeon) followed by eight sessions of carboplatin and Taxoltiere (sp?) resulted in a 15-mo. remission.  A PET/CT fusion scan showed new tumors. (None showed up on just a CT scan.)  Six sessions of Doxil were a disaster - more tumors and much suffering from severe burns over much of my body.  This was followed up with Gemzar and carboplatin, but I had a severe reaction to the carbo. the third time and we went to just Gemzar - total 12 sessions.  About the time I started the most recent round of chemo, I started taking 2000 IU of Vit. D-3 (in addition to the 400 IU in my multiple vit.), and the close out PET/CT scan showed we were down to only one tumor and that one was much smaller.  We held off on further chemo to give me a chance to recover somewhat.  The last chemo was July 31; I've been taking Tamoxofen since mid-August.  A mid-Dec. PET/CT fusion scan showed no sign of activity!  Is it the Tamoxofen?  The Vit. D-3?  Don't know, but am hoping for a very long remission.  I still have some neuropathy in my feet from the first round of chemo, and sensitivity in my face and mouth from all of the sessions.  My wt. has gone from 220 lbs. to 147 lbs., most of the loss during and since the last round of chemo.  I haven't had much appetite, and am glad to have the energy that comes from no chemo and a decent wt.  Perhaps having stayed away from most sweets / sugar and having less fat to feed the tumors are factors.  Don't know, but plan to become more active to get my body in better shape, and to continue with the Vit. D-3 and Tamoxifen.  And continue to welcome prayers by anyone who offers them.  I wish you better health and much happiness!  Good luck!

Jane