COMPLETE REMISSION!!!!!! (Update provided 8 months later)

Our new pet outside our hotel room

Update: We are thankful to our medical team , our complete remission lasted 6 months. We are continuing treatment with Doctors Kleef, Williams and Rosenberg. Please refer to updated blogs!


We are in disbelief. Four months ago, I broke the news to Layla about the scan results showing that the cancer was now in her liver with too many lesions to count. It was a miserable day with lots of tears and pain.  Layla looked at me and asked: "Does anybody ever come back from mets in liver?, I am not ready to die!". The odds are super slim.

While we were all trying to come to terms with the new escalated level of the disease, Nina was already looking at all the options that she knew of and what was the best way to turn this nightmare into a blessing in disguise. With the metastatic disease now in her liver, Layla became a candidate for the OX40 Intra-Tumoral injection (Stanford Study) but needed treatment to shrink the extent of the lesions ahead of the injection.

Fast forward to the first week of 2019 and following 13 weeks of treatment, Layla's petscan showed no evidence of disease. Both Dr. Williams and Dr. Rosenberg reviewed the actual scans and not just the reports and they are in agreement with the radiologist's findings that there is no evidence of active cancer and they declared Layla in COMPLETE REMISSION!!!

It is a miracle indeed and lots of not so exact science. Immunotherapy, low dose chemotherapy and repurposed everyday drugs. We owe so much to the geniuses of the world and thank them for thinking outside the box and daring to practice a not-so-traditional treatment and for giving survival chances to many individuals with cancer without the side effects of the harsh traditional chemo. Thank you Dr. Ralf Kleef, Dr. Michael Rosenberg and Dr. Jason Williams!

We are not out of the woods. We will not be out of the woods for years to come. We transition now to a maintenance program. Similar to the current one, Layla will get a couple of days of treatment every other week (for two months) followed by every three weeks for three months followed by once month and eventually just oral meds. We will, of course, monitor the tumor markers. We expect them to keep coming down. We are no longer looking for an absolute value. A rise could signal cancerous activities. The good part is, if the cancer returns, The OX40 intra-tumoral injection should work again. I have attached our tumor markers for one last time.

Date                    CA 125      Ca 27.29       Ca 15-3

10/15/18             1767            1511               821

10/29/18              898             1636               968     (following 2 weeks of treatment)

11/8/18                245              742                498     (following 4 weeks of treatment)

11/19/18               89               389                192     (following the immunotherapy procedure)
12/3/18                 64               338                143    (following 6 weeks of treatment)

12/10/18               59               252                101     (following 7 weeks of treatment)

12/17/18                49                222                 104     (following 8 weeks of treatment)
12/27/18                37                171                  81      (following 9 weeks of treatment)
01/02/19                36                142                  69      (following 10 weeks of treatment)
01/07/09                35                145                  60      (following 11 weeks of treatment)
01/15/09                35                112                  56      (following 12 weeks of treatment)

 % Drop                98               92.6              93.2   (%Change from start of treatment)

Goal                   <35                 <38               <32

Thank you all for your care and generosity. Your donations have made a huge impact on our journey. It did not just relieve the immediate financial burden but it boosted our morale and made us feel surrounded with love, hope and prayers. I am providing one last update of our PlumFund accounting. The balance of $19,232 will be used for our maintenance period which will probably run around 5-6 K per month.

Plumfund Accounting:

Total money in Plumfund as of 1/1/19: $123,058

Net amount available: $119,411 (and $200 pending receipt). This takes into account credit card fees withheld by the account.

Amount expended through 1/1/19: $97,240

Dr. Rosenberg Treatment (1/1/19-1/16/19): $2750

Medicine (1/1/19 through 1/16/19): $189

Total medical spent (1/1/19 through 1/16/19): $2939

Balance as of 1/16/19: $19,232

Thank you Team Layla!!!

With lots of love,
Layla & Family