The Other Shoe is Dropping...After 13+/8+ Years

I decided it was time for another update. I am currently in Cycle 11 of the Paloma 3 clinical trial taking Faslodex + Palbociclib/Placebo. My original MBC dx was March 2014. I started on the trial April 2014 as my first line MBC Tx.
I had a Stage 3C Lobular BC in 2005 and had remained NED until last March when routine CT scans detected multiple sites of enlarged lymph nodes. The Lobular pathology was again confirmed from the removal of a cervical neck node.

The trial is tracking my 3 largest abdominal nodes after each 2 month CT scan. As of my last scan in Jan this year, my 3 targeted nodes have reduced in size a total of 67% compared to my pre-trial baseline. My largest node which originally measured 3.1cm x 1.9cm is now 1.2cm x 0.5cm!

No new suspicious sites or areas of progression are noted on the scans. My CTs continue to detect multiple small "sclerotic lesions" in my spine and pelvis bones which have remained unchanged at every scan. My pre-trial bone scan indicated degenerative arthritis but did not detect any "active" bone lesions, so we are continuing to monitor and hopeful there is no active bone disease there. My mild hydronephrosis has remained stable or slightly improved.

While most my results are overwhelmingly positive, there are still some areas of concern and uncertainty. I have blood work drawn monthly and only my tumor markers are consistently outside normal limits. My CA 27:29 has been on a slow rise with occasional drops and then new increases, the last result was up to 70. My CEA has consistently been on the rise since the first blood draw. It started out last May at 185 which is already in the high zone and this past Monday it is now up to 535. TM's are subjects of great controversy regarding their reliability and I would not make a treatment change based on TM's alone, but would feel better if they would start dropping after 11 months in tx.

I do experience the standard fatigue and periodic drop in WBC/ANC/PLATELETS as a result of the treatment protocol. My only significant clinical issues are GI related. They are of enough concern that myself and my onc feel it is likely I have metastatic spread of Lobular BC to my peritoneum/GI tract area. Lobular BC is known to have an atypical metastatic spread pattern when compared to Ductal BC. Lobular BC is much more difficult to detect by Mammogram, US or even CT scans. This is because Lobular does not make rounded tumors, but rather spreads out in thin sheets, attaching itself to multiple sites, the stomach and abdominal area being most common for metastatic spread.

So as a result of my GI involvement, I have early satiety (stomach feels full too soon), stomach cramps/spasms, diarrhea and significant weight loss. I think it is highly likely that my elevated TM's may be reflecting the GI inflammation and cancer presence there. In fact my most recent CT scan did indicate small amounts of ascites in the abdomen and free fluid in the pelvis.

My onc and the trial will continue to monitor these issues. As long as I have no new progressions and continue to have reduction in the target nodes, we believe the treatment is effective. We will monitor for any increases in ascites or pelvic fluid by clinical presentation and scans. I have learned to adjust to the GI symptoms with multiple small meals a day and am supplementing my diet with high calorie/protein replacements to maintain weight. Having to buy new clothes to fit my "slimmer" body is not a bad thing, I just don't want to end up looking like Twiggy! (lol...for those old enough to know who Twiggy was)

So the treatment plan continues and I continue to be so grateful for the positive results to this point. I am keeping faith that the reduction in the lymph nodes will translate to ultimate improvement in GI symptoms and TM levels!

For those who are interested in following news on Palbociclib, it looks like it is getting closer to FDA approval and possible release to the open market. Pfizer has suggested it's brand name be IBRANCE. Here is a recent in-depth article about Palbociclib's clinical trial data and impressive results: (may require a Medscape account to view)

http://www.medscape.com/viewarticle/838484?src=wnl_edit_tpal&uac=126254SV#vp_1

Linda

Hi Binney, it's good to hear from you! Your comment about Lymphedema being a possible cause of my ascites has me intrigued. At first glance it does not seem likely to me, but I will definitely do some research. I did find an interesting article of a patient who experienced lymphatic ascites 20 years after having surgical and radiation treatment for cervical cancer. The article notes that while rare, it can happen.

http://www.sciencedirect.com/science/article/pii/S2211338X12000403

In my case, fortunately the amount of fluid seen on CT is very small and not symptomatic. My limb LE has somewhat improved with my weight loss, to the point I need to order new garments actually. My therapist, however, has noted what appears to be increased truncal LE so your theory is worth considering!

Hopefully it is a fleeting problem that will resolve on its own. CT scans again in March will give us more info if there are no worrisome symptoms before then.

Binney, thanks so much for the prayers and hugs! Those are always greatly appreciated!

P.S. when I can find the time to do it properly, I would like to make a post for the LE forum recounting my experience a few months ago of having Extravasation of IV CT Contrast media into my right arm. It was a real example of how awareness of LE and getting immediate proper LE management may have prevented permanent serious damage. I hope to share some very important things I learned that LE patients should be discussing with their radiology/scan technicians prior to getting contrast media.

Linda