"Hi girls,
Today is my 3 year anniversary since being diagnosed with ovca.
I received an early birthday gift a couple of days ago when I was told that my CA125 had dropped from over 1,800 to 1,386 after being on the oral PARPs for 2..."
sueoz's Profile
Are you sure you want to delete this personal page?
Profile
Status:
...
About Me: Female, Sydney, Australia, member since Mar 2009
14 March 2006:
Dx with Stage 3C OC (full hysterectomy, removal of omentum), but having symptoms for at least a year before diagnosis. My cancer had spread to my rectum, a ... [More] ppendix and para-aortic lymph nodes (which couldn’t be removed safely – ie they were inoperable).
April 2006 – July 2006:
6 cycles of Carbo/Taxol which put me into remission until September 2007 (14 months).
August 2006:
Changed hospitals/surgeons – my original gyn onc/ medical oncologist was pushing for a second look operation after finishing first line chemo, which I was scared about and felt was too soon.
My original doctors never told me about PET scans and how they were extremely useful for picking up recurrences/ smaller tumors. My new gyn onc sent me for a PET scan to see if there was any remaining cancer after the chemo (we didn’t think there would be – my CA125 was “less than 6”). He was against second look operations for the sake of it, as that was considered out of date practice.
While I was in remission from August 2006 to April 2007, I tried all sorts of naturopathic treatments and alternative medicine – in particular, taking HEAPS of supplements (50-100 tablets) as well as traditional Chinese medicine. I pretty much took the approach of Patrick Quillin from his excellent book “Beating Cancer with Nutrition”. (Oh, and I’ve spent a couple of thousands of dollars on books about OC and nutrition/alternative medicine on Amazon). Needless to say, when I was diagnosed with OC, I quit work and devoted my whole time on trying to stay alive/ heal myself.
September 2007:
Had a PET scan which revealed a recurrence in the lower right abdominis rectus muscle (in the groin region). Previous PET scans performed in August 2006 and December 2006 did not reveal any cancer. Then had an ultrasound-guided fine needle biopsy of the mass, which confirmed the recurrence (which was an apparently isolated 18mm mass) and a further MRI of the abdomen.
Saw my original gyn onc for a second opinion about my recurrence. Surprise, surprise, he strongly suggested surgery to remove the mass – and I almost took up the offer to have it done.
October 2007:
Saw my gyn onc who recommended radiation therapy to treat the recurrence since it was an apparently isolated tumor.
November – December 2007:
Had radiation every week day for six weeks. Started supplement regime again while having radiation – however, I have never taken supplements with chemo (apart from the more basic ones, like vitamin D, fish oil and calcium supplements).
November 2007:
My new medical oncologist referred me for genetic testing, had it done and it came back that I was BRCA1 positive. Apparently after he looked at my pathology, he was convinced I was BRCA positive because of the involvement of my fallopian tube in the development of my OC.
November 2007:
CA125 rose from 65 to 247. CA125 continued to rise because further tumors started to grow.
January 2008:
Had a CT which revealed 2 new visible tumors near the bladder. CA125 rose from 247 at the end of November 2007 to 850 in January 2008. I wanted more radiation to treat these further recurrences/progression of cancer – but my radiation onc said chemo was the best option and I had been dreading going back to chemo (as my hair had now well and truly grown back and I appreciated it). I demanded a PET scan, which I got, and it showed that more cancer sites had begun to be active.
February – July 2008:
My medical onc told me I had just missed out on a PARP-inhibitors clinical trial!
But because I was BRCA1 positive, my medical onc said carboplatin alone would be sufficient to treat my OC progression. I managed 3 cycles and on my fourth cycle, I developed an allergic reaction to the carboplatin – and then put onto oral cyclophosphamide which I only took for a month because it made me sick. My CA125 dropped in the normal range when I was on the carbo, but after I stopped taking it in May due to the reaction, my CA125 started to rise again and further recurrences/progression were seen in the abdomen region in a PET scan I had at the end of July. My onc said that there were sites which were resistant to the carbo even though many sites were responsive (so responsive that when I first had my carbo infusion in February, my CA125 dropped from over 1,000 to 125 and then in the normal range with the second carbo treatment).
August 2008:
My medical onc said we would have to wait for tumors to grow to at least 1cm and be visible on a CT before I could enrol in an upcoming PARP-inhibitors clinical trial. The only catch – this time the trial was comparing the PARP inhibitors with Doxil, unlike the previous clinical trial which closed in February which was trialling PARP-inhibitors only.
October – December 2008:
The clinical trial (PARP-inhibitors vs IV Doxil) opened. I was the first patient at my hospital to enroll in the trial. I prayed and hoped that I would be on the PARP arm since that only involved swallowing some pills instead of having IV chemo. There were 3 arms: 2 would be taking PARP-inhibitors and 1 would be having IV Doxil every month. I was assigned to the Doxil arm and was devastated as I was hoping to avoid having further IV treatment since my veins started to give up on me and I dreaded having a port put in (which I still have resisted).
January 2009:
I had my fourth cycle of Doxil on January 21. Had a fight with the head nurse who insisted that I have a port put in because I was taking up too much time for them trying to find my veins. My CA125 when starting on Doxil in October 2008 was over 1,500. But on the second Doxil treatment it had dropped to 500 (which was unusual since it normally takes 3 months for any CA125 drop to occur if the chemo works). However, my CA125 has since started to rise and it has in the past month risen from 550 to now over 1,000. I am hoping and praying that I am given the chance to switch over to the PARP-inhibitors as I always wanted since it seems there are now sites of Doxil resistance.
February 2009 - to date:
I am now taking oral PARP inhibitors tablets as part of the IV Doxil vs PARP inhibitor clinical trial. [Less]
Dx with Stage 3C OC (full hysterectomy, removal of omentum), but having symptoms for at least a year before diagnosis. My cancer had spread to my rectum, a ... [More] ppendix and para-aortic lymph nodes (which couldn’t be removed safely – ie they were inoperable).
April 2006 – July 2006:
6 cycles of Carbo/Taxol which put me into remission until September 2007 (14 months).
August 2006:
Changed hospitals/surgeons – my original gyn onc/ medical oncologist was pushing for a second look operation after finishing first line chemo, which I was scared about and felt was too soon.
My original doctors never told me about PET scans and how they were extremely useful for picking up recurrences/ smaller tumors. My new gyn onc sent me for a PET scan to see if there was any remaining cancer after the chemo (we didn’t think there would be – my CA125 was “less than 6”). He was against second look operations for the sake of it, as that was considered out of date practice.
While I was in remission from August 2006 to April 2007, I tried all sorts of naturopathic treatments and alternative medicine – in particular, taking HEAPS of supplements (50-100 tablets) as well as traditional Chinese medicine. I pretty much took the approach of Patrick Quillin from his excellent book “Beating Cancer with Nutrition”. (Oh, and I’ve spent a couple of thousands of dollars on books about OC and nutrition/alternative medicine on Amazon). Needless to say, when I was diagnosed with OC, I quit work and devoted my whole time on trying to stay alive/ heal myself.
September 2007:
Had a PET scan which revealed a recurrence in the lower right abdominis rectus muscle (in the groin region). Previous PET scans performed in August 2006 and December 2006 did not reveal any cancer. Then had an ultrasound-guided fine needle biopsy of the mass, which confirmed the recurrence (which was an apparently isolated 18mm mass) and a further MRI of the abdomen.
Saw my original gyn onc for a second opinion about my recurrence. Surprise, surprise, he strongly suggested surgery to remove the mass – and I almost took up the offer to have it done.
October 2007:
Saw my gyn onc who recommended radiation therapy to treat the recurrence since it was an apparently isolated tumor.
November – December 2007:
Had radiation every week day for six weeks. Started supplement regime again while having radiation – however, I have never taken supplements with chemo (apart from the more basic ones, like vitamin D, fish oil and calcium supplements).
November 2007:
My new medical oncologist referred me for genetic testing, had it done and it came back that I was BRCA1 positive. Apparently after he looked at my pathology, he was convinced I was BRCA positive because of the involvement of my fallopian tube in the development of my OC.
November 2007:
CA125 rose from 65 to 247. CA125 continued to rise because further tumors started to grow.
January 2008:
Had a CT which revealed 2 new visible tumors near the bladder. CA125 rose from 247 at the end of November 2007 to 850 in January 2008. I wanted more radiation to treat these further recurrences/progression of cancer – but my radiation onc said chemo was the best option and I had been dreading going back to chemo (as my hair had now well and truly grown back and I appreciated it). I demanded a PET scan, which I got, and it showed that more cancer sites had begun to be active.
February – July 2008:
My medical onc told me I had just missed out on a PARP-inhibitors clinical trial!
But because I was BRCA1 positive, my medical onc said carboplatin alone would be sufficient to treat my OC progression. I managed 3 cycles and on my fourth cycle, I developed an allergic reaction to the carboplatin – and then put onto oral cyclophosphamide which I only took for a month because it made me sick. My CA125 dropped in the normal range when I was on the carbo, but after I stopped taking it in May due to the reaction, my CA125 started to rise again and further recurrences/progression were seen in the abdomen region in a PET scan I had at the end of July. My onc said that there were sites which were resistant to the carbo even though many sites were responsive (so responsive that when I first had my carbo infusion in February, my CA125 dropped from over 1,000 to 125 and then in the normal range with the second carbo treatment).
August 2008:
My medical onc said we would have to wait for tumors to grow to at least 1cm and be visible on a CT before I could enrol in an upcoming PARP-inhibitors clinical trial. The only catch – this time the trial was comparing the PARP inhibitors with Doxil, unlike the previous clinical trial which closed in February which was trialling PARP-inhibitors only.
October – December 2008:
The clinical trial (PARP-inhibitors vs IV Doxil) opened. I was the first patient at my hospital to enroll in the trial. I prayed and hoped that I would be on the PARP arm since that only involved swallowing some pills instead of having IV chemo. There were 3 arms: 2 would be taking PARP-inhibitors and 1 would be having IV Doxil every month. I was assigned to the Doxil arm and was devastated as I was hoping to avoid having further IV treatment since my veins started to give up on me and I dreaded having a port put in (which I still have resisted).
January 2009:
I had my fourth cycle of Doxil on January 21. Had a fight with the head nurse who insisted that I have a port put in because I was taking up too much time for them trying to find my veins. My CA125 when starting on Doxil in October 2008 was over 1,500. But on the second Doxil treatment it had dropped to 500 (which was unusual since it normally takes 3 months for any CA125 drop to occur if the chemo works). However, my CA125 has since started to rise and it has in the past month risen from 550 to now over 1,000. I am hoping and praying that I am given the chance to switch over to the PARP-inhibitors as I always wanted since it seems there are now sites of Doxil resistance.
February 2009 - to date:
I am now taking oral PARP inhibitors tablets as part of the IV Doxil vs PARP inhibitor clinical trial. [Less]
Interests:
BRCA cancers, Ovarian Cancer, osteopenia, veins and ports
You haven't updated your status yet!
Mar 10, 2009
"Hello beautiful ovca warriors.
I'm Sue and I'm from Sydney, Australia. I've just joined today, but I've visited and used other ovarian cancer support groups before... I say you can never get enough information or make enough friends! ..."
No journal entries
No photos
10/09
Just a quick note to say hi
julie, some of your posts sound just like my cousin and as a matter of fact i actually thought one was posted by her. she just started the parp trial in bethesda and i think hearing your story would do her good. i couldn't figure out how to email the post so i copied and pasted it.
i see your last post was june 29, so please keep up the positive posts. thanks, Cheryl
06/09
Just a quick note to say hi! sueoz
what can i say i have been on the pharp inhibitors for 2 years and i have not looked back, i am not in remission but my tumors are un measureable, so i will cary on .
how are you doing
best whishes
julie
04/09
Just a quick note to say hi!sue i am glad to hear that you are on parrp inhibitors they are working for me and i do hope they work for you i do not use this site very often if you wish to contact me you can e-mail me at nicole.***@**** best wishes julie
03/09
Welcome to our community! Thanks for taking the time to do such a comprehensive profile. I don't have any info to offer on your post, just wanted to say hi and hope you get the answers you need.
Sharon
No Trackers
No Tickers
 | ||||
|
Remove
Are you sure you want to delete your ?
You will no longer be able to add new data to this tracker. | ||||
