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Thanks for not forgetting me!

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

Dear Friends…..I am so sorry I let you all think I had just fallen off the face of the Earth. I don't mean to go all Jason Bourne on you guys, but I know from experience that hospitals and large oncology practices pay people to monitor forums like this one – and this one in particular – and therefore, I can’t be totally forthcoming, and I apologize for that. However, here is what has been going on, in a nutshell:

Back story, for those who are really new and don’t know me: Diagnosed Stage IIIc in Sept of 2009. I had surgery, including a bowel resection, lots of complications, and the traditional cocktail of Carbol/Taxol. Then I did a year of Taxol maintenance. I was NED, officially, beginning in March of 2010 and I was accepted into a vaccine study at Memorial Sloan Kettering in NYC. My CA125 was checked monthly and I had CT scans every 90 days. Everything was always perfect. My CA125 did jump up a bit (to 18) when I had hernia repair surgery, but quickly dropped back down and hung out around 10-12 thereafter.
When I went to NYC for my vaccine trial checkup, my CA125 was still 12 but my CT scan showed 2 small areas of recurrence. A PET scan the next day showed two additional spots, both too small to see on the CT scan.

I started Carbol/Gemzar therapy right away (combo one week, followed by Gemzar only on the second week, then a week off) and have another 9 weeks to go. My PET scan last month showed only 2 spots left, and both of those are smaller. My CA125 is 9, but is obviously no longer an indicator for me. I’ve had several HE4 tests and they were also “normal.” The expectation, from more than one doctor, is that I will again achieve complete remission. Having to rely strictly on imaging studies to monitor my disease is very frightening, however. I feel like I imagine a pilot must feel, when he can’t see anything and has to fly by instruments.

The chemo this time has been pretty rough on me. I’ve had one blood transfusion, plus complications with my port. In fact, I go in tomorrow to have port #3 removed and replaced with #4. (My first port eroded thru the skin, port #2 was removed during my hernia repair surgery, and the one I have now was just placed in April.)

I was diagnosed about 10 days ago with a blood clot in my neck, where the port is located. I have been giving myself Lovenox shots for over a week now, and was on Coumadin before it was determined last week that the port would have to come out. All told, I’ve been in pain for over 2 weeks, due to the blood clot. So….not a very fun-filled Summer. This time around, chemo has literally been a pain in the neck for me, in addition to the “usual” side effects.

I was so saddened to hear about Clamryn (Linda E). After losing Libby, Linda P, Marty White, and Rooker Bird, Nancy K, Linda Dorion, plus all the others that have passed away since I joined in late 2009, I had already started to feel like it really was just a matter of time. Then I got the news that I had a recurrence, and that really messed with my head. Recurrence is harder to deal with than the initial diagnosis, I think, because it takes the C Word (“cure”) off the table. From now on, I know that I will be dealing with a chronic disease. I was in total remission for exactly 2 years. I hope the next one is that long. And the one after that. Common sense, however, tells me that isn’t likely. In the meantime, I hope I can find a promising clinical trial. I’ve heard that even though I am BRCA negative, some types of OC appear to mimic the BRCA mutation and might benefit from PARP inhibitors. One indication is an exquisite sensitivity to platinum therapy, which I seem to have. I am at least going to look into it.

For all you newbies…..I can’t stress enough how important it is to advocate for yourselves. You live in your body. You know it better than anyone else. And you are MUCH more vested in the outcome of your treatment than anyone else.


kikz's picture
Posts: 1346
Joined: Jun 2010

about your recurrence Carlene. I thought you were fine and just busy doing other things. I know people have mentioned you are on Facebook. You were one of the first people who's posts I read when I came on this site and was always impressed with your knowledge of this disease.

I also have a recurrence after approx 18 months of remission. It is different this time. When I was diagnosed I was so sick I just prayed I could be helped. This time the first rise in the CA 125 was devastating. I had to wait two months for another and when that result doubled I took it better because I already felt I knew something was going on. I had a petscan and was told I have a 1 x 2 inch tumor near my liver. I took that news matter-of-factly. I was already resigned. So I am rolling with it, not happy because as you said the dream of it never coming back is over.

In a strange way it is a relief. That sounds crazy but waiting for the other shoe to drop was maddening.

Good luck with your treatment and I hope you do get a remission. I guess the goal is now to feel good for as long as we can.

I didn't ever think about the site being monitored. Gee, I spill my guts here. Sad that it can't be only for the people I trust with my feelings.


JoanC's picture
Posts: 236
Joined: Jan 2009

So sorry to hear your news but you are a fighter and a Texan so go kick cancers butt.
It was good to hear from you and I so looked forward to reading your post....you have been missed.

djinco's picture
Posts: 87
Joined: Feb 2010

Dear Carlene,
I am glad to hear from you again but sad about your recurrence. Please stay in touch as you feel comfortable and let us know how you are feeling. I still hope that a cure can be found soon. God bless you and take care.


garden gal
Posts: 212
Joined: Nov 2010

I hate hearing your not in remission any more, but it sure sounds like you will be soon. Missed reading your post. Sending big hugs and prays your way. Kathy

poopergirl14052's picture
Posts: 1185
Joined: Nov 2010

You are so smart and have a lot of great advice. Sorry to hear you are getting chemo again but. You will be in remission again. Please come back and let us know how you are."...Val

Posts: 114
Joined: May 2011

I'm stunned and saddened by the news of your recurrence. Hope you get feeling better and can salvage some of the summer that is left.

Dave & Tina VG

Cindy Bear
Posts: 570
Joined: Jul 2009

dear lady. It's so wonderful to see your smiling face. But I am very sad to read your latest news. I know we all hate this gosh awful disease and not too much surprises and shocks me anymore... still, with everthing you've been through, the taxol maint. , the vaccine trials, it just seems so damn wrong.
Hang in there (I know you will!)
Sending big hugs your way.

LoveButterflies's picture
Posts: 74
Joined: Feb 2012

Good to hear from you Carlene! I'm sorry for your recurrence, but I can see that you are true to your nature and are fighting back ready for another remission!

Stay strong and know that we are here for you, as you have been for us!



lovesanimals's picture
Posts: 1364
Joined: Sep 2011

I too had been hoping that you were fine and busy enjoying life, so I am very sorry to read that you've had a reoccurrence. Sending you good thoughts and prayers that you kick cancer's butt and go back into remission.


kimberly sue 63's picture
kimberly sue 63
Posts: 421
Joined: Apr 2012

Sorry you are dealing with the re-occurrance now. I'm interested in why the CA125 is no longer a biomarker for you to follow now. How big were your lesions when they found them? Maybe not large enought to trigger high CA125? How will you be followed then to see if the treatment is working? Kim

mom2greatkids's picture
Posts: 528
Joined: Jun 2011

Sorry about the recurrence Carlene (I'm dealing with that too). I have missed you. You have made me smile so many times since I joined this board last summer. Best wishes as you continue your treatments.


Susan53's picture
Posts: 179
Joined: Jun 2011

I am sorry to hear of your reoccurance. I will be praying that you find another remission soon. You are someone that we all look up to. So glad that you posted to keep us informed. I had no idea all that you are going through. I like the advice that you gave the newbies to advocate for themselves. I do know how you are feeling about the CA125 not being a marker anymore. I never was a marker for me so we just rely on scans and the way I feel. We are all hear for you and remember we are all warriors , so call on us when you need us. Hugs Sharon

Posts: 1223
Joined: Jun 2008

thanks for the update! You have been through a LOT, and my heart breaks for you, but I have so much hope that you will once again achieve NED! And I know that you will find that trial that is perfect for you.

You rock woman!


Posts: 1995
Joined: May 2003

So sorry, Carlene. I guess I just assumed you were out 'sunnin' and funnin' all this time. I didn't realize that you're dealing with this beast again.

Thank you so much for filling us in. I hope your next post will bring much better news, that this clot has been resolved, and your pain is gone. I also hope you find the clinical trial that will be best suited to you.

Till then, sending oodles of hugs and prayers your way, Carlene.


Mwee's picture
Posts: 1341
Joined: Nov 2009

Ditto here on thinking and hoping that you were busy living large. My fondest wish is that you can be back in remission.
(((((((HUGS))))))) Maria

AnneBehymer's picture
Posts: 739
Joined: Jul 2011

I am about to start the same medication have you lost your hair yet or do you know if you will.

Love, Hugs, and Prayers

Posts: 9
Joined: Aug 2012

Hi I am 21 in a week & have been having problems for the last 11 month since I gave birth to my son & my doctors kept fobbing me off then 5 weeks ago I got a CA125 test and my level was 30 which I am know to belive is normal and 3 weeks later got tested again and my level was 41 which the doctor seemed really concerned about and has organised me to go for a urgernt scan on monday he said it may be cancerous cysts I can't help but worry as I am only young and I have a young son I have had very iregular periods since having my son I beled every 11 days & after sex but I have not bled once for the past 11 weeks and I have took 4 pregnancy tests which all came back negetive, could it be cancer or am I just worrying myself? Please help me try to make sense of my situation, many thanks yasmin xx

leesag's picture
Posts: 625
Joined: Jan 2010


Never take the C word (cure) off of the table. Remember from the Inspire board, Helen Stands For Hope. I think she had 2 recurrences and ended up with decades cancer free. :)

Thinking of you honey!



pattysoo's picture
Posts: 172
Joined: Oct 2010

Crummy summer for you, and I'm sorry. What do you mean that this site is monitored? For what? By whom?
Are you still in the vaccine trial?
I have an irrational fear of recurrence, but I think I'm looking at it coming on. Sigh
Here's hoping you can recover quickly and enjoy NED status once again.

annecris's picture
Posts: 44
Joined: Jan 2011

Dearest Carlene - we seem to be on the same track but I know that I know that I know we will beat this again dear sister - I am done with the Carbo-Gemzar - totally in remission no sign of anything CA-125 hovering between 9 &10 (lowest it has ever been for me)- am on maintenance Avastin (1/2 hr. infusion spaced 3 weeks apart) for the rest of the year - so sorry you have had to deal with this again and the port problems too :( but we will be OK and stand strong at the end - have retired on Social Security and Pension Disability - so grateful for that - the Avastin sucks - giving me muscle pain and a lot of fatigue for about a week and a half after the infusion - stopped my cholesterol meds becasue they were jsut making things worse -I am good to go 5 days before I have to go back again - I AM not letting this win Hon - been looking to get our dream home and farm in rural northeast PA- Bob says it will be our spiritual retreat - so excited - maybe you and your Bob can spend some time with us if you have to come back to Sloan again for any treatment - we hope to close in late October - the Fall should be so magnificent up there - we will be on top of a mountain with 360 views all around - something to look forward to and stand strong for - call me if you want to talk - I am here for you - Annie

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