In the recurrence club now

Editgrl said:

The marathon metaphor

never seemed more appropriate.  Becca, your post reminded me of a woman I met at a Cancer Survivorship forum a few years ago, right after I was diagnosed.  She had been in treatment for 12 years.  12 years!  And she was the most vibrant, articulate, spirited woman in the room. Her cancer kept coming back, but she kept on living her life despite that.  So while it's possible you may never reach long term NED, that doesn't mean cancer has won.  So stay strong, stay hopeful, and when that's hard to do, know that all of us are here to be strong and hopeful for you.

Chris

Thank you for this, Chris!

good luck today. I'll be thinking about you. 

Thinking of you, Becca.

Ditto 2.  Rebecca, I've been thinking of you all day and sending you good, peaceful thoughts.

I am so sorry to hear that your instincts were right and my hope that what you were feeling was just leftover issues from treatment proved wrong. I hope that I didn't come across as trivializing your concerns; I just didn't want to believe that a recurrence could happen so quickly for you. It just feels so unfair when frontline treatment fails for any of us because it's such an achievement to get through it. To have to face more...... oh, boy. Hoping that your recovering ok from the biopsy and that it helps with determining which direction your treatment goes in next. I so want it to be more effective this time. Sending you a big, big hug!!

Pat

Beebster said:

I'm in the recurrence club, too

An update on my experience for Beccabtown and others who may be on the recurrence sleigh ride,

I've posted elsewhere about my background, so briefly: Stage1B, Grade 3 (mixed histology, including serous, which makes it a serous dx), TAH November 2015, six rounds paclitaxel/carbo, 3 brachytherapy. Treatment ended May 2016. Clean scans in Dec. 2015 (post surgery) and in June 2016 (post treatment). Normal CA-125 (9) in October 2016. December 2016 scan showed large peritoneal tumor, smaller tumor, lymphadenopathy and mets in and on my liver. CA-125 was 177. An immediate PET CT confirmed cancer (my onc was shocked). No biopsy, assumed to be endometrial. So, yes, it came on quickly and ferociously.

Treatment was six rounds of pegylated doxirubicin liposomal plus carboplatin, a round every four weeks. Which stretched to 5 weeks, then six weeks, then eight weeks as my poor bone marrow struggled to meet that minimum ANC number, even with reduced chemo dosages. I started in December 2016, finished the six cycles in June. Had a March CT mid-way through, which showed that the liver mets had resolved as had the lymphadenopathy. The large tumor had shrunk significantly. It was at this point that I added Metformin to my regimen. My most recent scan at the end of June showed no radiographic evidence of disease. My CA125 is holding steady at 31 (I'm not happy with this as it was around 7 to 9 for the several months before recurrence).

My onc expected the chemo to "knock it back", but he is (very) surprised at how completely the cancer has "resolved". He cautioned me that my cancer is not gone, "we just can't see it". We all expect it to return, but when is anybody's guess. No therapies for now, my bone marrow needs to recover.  I am on monthly blood work (including CA125 and HE4), and I will have another CT in two months. That two-month CT is what tells me how quickly he expects it to come back, given how quickly it came back before. Stats say that in general, you get about half the remission time with each successive treatment. But, I am a statistic of 1, and who knows what the Metformin may be doing for me! We have not yet discussed what the next step will be when (and if!) my cancer returns. My molecular profiling indicates that PARP inhibitors may be useful, assuming I can get access. I know a couple of women with Stage IV ovarian who are on long-term PARP meds- four years and longer - as part of a clinical trial. So there's a lot of hope and good news there. Vaccines are on the brink, other immunotherapies, plus different drug delivery vehicles to more effectively target solid tumor cells while protecting your healthy cells. Lots going on. Will these be available for me if needed? I'm thinking I'll be around!

In the meantime, I have my beloved husband, who with a Parkinson's diagnosis reminds me, with a smile, that while I'm currently showing NED, his brain is continuing to be shredded. We clutch each other AND our labrador retriever, and huddle for a few minutes. Courage. One foot in front of the other. Deep breaths. Ativan as needed.

One other thing: I experienced minimal side effects from this chemo regimen. A bit of neuropathy in my feet, added to the original neuropathy from frontline treatment. A queasy stomach on days 3-7, but never any full-blown nausea or vomiting. No mouth sores, no hair loss. No real fatigue, but some occasional  "lead leg" feeling. No hand/foot syndrome. My CRNA says I'm unique among their patients, with virtually no chemo side effects. I did lose my hair with my frontline paclitaxel. I feel great, have beaucoup energy, have worked through all of this. Hard to believe my neutrophils are having the trouble they are. I urge them forward, too.

Good to hear from you and so glad things are looking up with your treatment- so very sorry to hear about your hubby!  I'll keep you both in my thoughts and prayers.  (((HUGS)))

I've gotten way behind on my reading on this site after my vacation.  Your case sounds similar to mine.  Please see my new thread of 8/1 about my progress.  It should give you some hope.