Squamous - IV, Substantial Tumor Shrinkage, Trial Drug, Nivolumab, BMS-936558 - 1255664

Thanks Janine and FeistyD for your kind responses and all the best to you.

I write for us as English is my wife's second language. Even though she was a long time smoker who quit about 8 years ago, this was still a shock and we were devastated at the stage 4 diagnosis at age 55. Although she has retained as positive an attitude as possible the future wasn't overly rosey. I have been the online cancer research student and her 24 hour nurse as we are in this as a team. She still cooks (she is a marvelous Japanese and American chef) and talks daily to her 84 year old cancer survivor mother who still works 6 days a week in Japan at the family shop.

We feel very blessed and fortunate to have found such a brilliant oncologist as Dr. Jack West and our lucky timing to qualify for and draw the trial drug. Noriko has found hope for the future and feels like a young woman again. We plan on returning soon to Japan during our 2 week break to visit family and Musashi (the lovable family long haired Dachshund).

We hope her good progress continues. The care at the Swedish Cancer Institute has been so friendly and professional she has been very pleased.

Bless All At Grace,
Chuck

Hi Certain Spring, to the best of my knowledge the study you link is a slightly different trial. It says:

"Subjects with histologically or cytologically-documented locally advanced non-squamous cell NSCLC who present with Stage IIIB/IV disease or recurrent disease following radiation therapy or surgical resection"

I believe there are a number of different trials by BMS using this same drug. The specific study trial that Noriko is on is for squamous cell, NSCLC. The title of her study is:

An Open-label Randominzed Phase III Trial of BMS-936558 versus Docetaxel in Previously Treated Advacned or Metastic Squamous Cell Non-small Cell Lung Cancer (NSCLC)

Protocol NO: CA209017
WIRB Protocal #20121428
5322W-12

BMS-936558 is now also called Nivolumab and was previously known as MDX-1106 (Medarex, US) and ONO-4538 (in Japan, Korea and Taiwan). BMS (Brystol-Meyers Squibb has the worldwide rights for lung cancer except for Japan, Korea and Taiwan. ONO pharmeceutical is mainly testing this drug for melanoma and renal cancer.

I believe this below link is to the correct trial that Noriko is on. Note, some of the other trials with BMS-936558 are very similar with a few differences like squamous or non-squamous and Phase I, II or III, etc.

http://www.clinicaltrials.gov/ct2/show/NCT01642004?term=bms-936558+nscl…

Worldwide study locations here:

http://www.clinicaltrials.gov/ct2/show/study/NCT01642004?term=bms-93655…

Hope this helps and all the best to you Certain Spring!

Chuck

:-D

Dr. West, we both decided right after the first visit that you are Noriko's certified permanent oncologist. You are stuck with us both for a very long time.

Thank You, Arigato Gozaimasu! C & N :mrgreen:

UPDATE, May 27, 2014

Noriko started on Nivolumab, PD-1 Immune Checkpoint Inhibitor, in late Jan, 2013. All went very well thru early Summer of 2013. She had significant shrinkage of the lung tumor and no pain or side effects. Then over several months she started to experience inflammation of the axillary underarm lymph nodes and daily fevers. Her symptoms seemed similar to those of Kikuchi's Disease (histiocytic necrotizing lymphadenitis). In July 2013, Dr. West started her on steroids and discontinued the Nivolumab. A biopsy eliminated the possibility of lymphoma. The last day of August with a high fever she went to the ER and ICU for three days. By release day her fever was gone and treatment with steroids and anti/biotic/fungal/viral (for several weeks) her fever did not return and the lymph issues slowly subsided. Dr. West put her on Celebrex, 200mg, 2X day and started her back on Nivolumab in October after she went off the steroids.

She continues to have no pain or side effects. She has an Xgeva shot very 8 weeks for the mets in her spine and ribs. A CT scan every 6 weeks shows continued shrinkage of the tumor from about 8cm x 7.5cm in Jan 2013 to presently about 1.4cm x 1.0cm in May 2014 (approx 85% reduction). There are no indications of new metastasis or inflammation. With the 3 month break, she's had about 12 months of Nivolumab, 28 bi-weekly infusions. Her labs are good and she feels very well. Dr. West (bless him) has allowed her to travel home to Japan for a family visit several times during her two week infusion breaks.

I feel hesitant to post about her mostly wonderful progress so far since there are folks who have not had such good results and some who have sadly lost the fight. May Noriko's blessings so far be contagious. We hope the good results with the immunology type drug continue.

Thanks to our eminent oncologist, Dr. Jack West and his wonderful staff at the Swedish Cancer Institute.

Chuck & Noriko

Thanks Jim and Seth for your kind words ..... yes there is hope! We do feel blessed that Noriko is experiencing such good success with her Nivolumab immunology drug after a rough start with several combos of Gemzar with Cisplatin/Carboplatin.

Up to Jan 2013 she was off chemo for almost 3 months and experiencing very high pain (180mg Oxy per day). BTW, we found that an OTC anti-inflammatory drug like Ibuprofen worked even better than the opiates for her pain which seemed to be the tumor pushing against the spine and ribs which had mets. After one week on the PD-1 drug the pain was gone.

I feel there is some luck involved as in being selected by computer to receive the trial drug itself. Otherwise, I have to give us both credit for lots of research on lung cancer treatment and what we feel is most important. We live in a large metropolitan area and asked for a second opinion after first consulting with a general medical oncologist recommended at our clinic. We both wanted a second opinion and our primary care doctor was very supportive and referred us to the Swedish Cancer Institute. We requested the oncologist that most specialized in lung cancer in the West (pun intended!). In walked Dr. Jack West and we had an immediate bonding with this marvelous oncologist and his very knowledgeable and caring staff. The formula for us was: select one of the best cancer centers in your area + select one of the best lung cancer oncologists at that center + be open to a clinical trial drug if available = the best chance of success.

In July of 2012, Noriko was originally given an estimate for stage 4 squamous NSCLC survival of about 8 months or so. She is now going into her 23rd month while feeling very well.

UPDATE: August 14, 2014

Two Year Survival, stage 4, squamous cell, NSCLC!

Dr. West diagnosed Noriko with stage 4 squamous NSCLC on August 14, 2012. She continues to do very well on her bi-weekly infusions of Nivolumab, BMS 936558. There is no indication of further metastasis and the lung tumor is tiny compared to the original size, maybe 15% or less. She is experiencing no noticeable side effects and her labs are all good.

We are both amazed and so thankful for her progress on this clinical trial drug. Perhaps this might offer hope to others for possible treatment in the future with further testing and advancement of immunotherapy cancer drugs.

There are no words that can adequately express our heartfelt thanks to Dr. Jack West, the Seattle Swedish Cancer Institute and staff, and Bristol-Myers Squibb.

Chuck & Noriko :-D

UPDATE ----- Three Year Lung Cancer Survival! ----- Stage 4, Squamous Cell (NSCLC) Lung Cancer.

I just wanted to update all of the good folks here on Noriko's continued battle with cancer and her three years of survival. We feel so blessed at her amazingly positive results since she started 31 months ago on the clinical trial drug Nivolumab (now brand name Opdivo) from Bristol-Myers Squibb which was FDA approved in March, 2015. She is now off the clinical trial so she can receive the drug on a less frequent commercial prescription basis (now every 4 weeks versus every two weeks before). Of course the frequency of infusion can be adjusted up or down as her oncologist recommends.

She is feeling very well with almost no side effects for the last 4-5 months. Tests show no spread of the cancer and the original tumor is now very small, about 0.9 x 1.6 cm's versus 7.5 x 8.0 cm's 30 months ago. Her oncologist cautions us that it is possible in the future at some time that the drug will cease to give positive results and that we would need to consider alternative drugs. We will keep out fingers crossed that she continues to do well.

Thanks so much for all the continued support, caring comments, thoughts and prayers. Thanks to Bristol-Myers Squibb, Swedish Hospital Seattle Cancer Institute, and especially to Noriko's esteemed lung cancer oncologist Dr. Jack West and his extraordinary crew.

Chuck

Stage 4 Squamous Cell Lung Cancer IN REMISSION!

11-1-2016, Dr. West ordered a PET/CT scan the morning before Noriko's now every 8 week infusion of Opdivo (Nivolumab). He came into the exam room with the biggest smile I had ever seen on his face. He said:

Good news! The scan shows no sign of cancer and you are in remission.

Noriko and I are of course ecstatic after a 53 month battle since we first knew she had lung cancer and 51 months since Dr. West gave her the Stage IV diagnosis. She had been on Opdivo for 45 months after two failed regimens of chemo. She now only has a few arthritic symptoms in her lower legs, possibly a side effect and we are currently consulting with a rheumatologist.

There is hope for stage 4 lung cancer!

Thanks so much for all the support, caring comments, thoughts and prayers. Thanks to Bristol-Myers Squibb, Swedish Hospital Seattle Cancer Institute, and especially to Noriko’s esteemed lung cancer oncologist Dr. Jack West and his extraordinary crew.

Chuck & Noriko :mrgreen: