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maxxschiken's Message Board Messages

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Annie is gone...

by maxxschiken - December 04, 2014

Sorry I've been away. Annie's cognative impairment worsened after starting folfiri on Sept 22 so on Nov 11 we had an MRI which told us her cancer had metastisiced to her brain. I chose to keep her in the comfort of our home instead of taking her to Stanford for them to perform procedures for releaving the swelling in her brain. I basically told our oncologist, enough was enough and I did not want to subjecdt her to poking and prodding to give me what? A few more days? We opened our doors from November 11. For 12 days we surrounded her with family, relatives and friends each day until Annie closed her eyes and fell into a deep sleep on Wednesday November 19. She slept peacefully, with no pain, no pain medications for three days until she took her final breath at 12:45pm on Sunday November 23.

Today, she will be cremated and I will bring her ashes home at 3:30pm PST where we will keep her in a special cove in our homes stairwell. Annie was victorious in this 3 year journey with stage 4 inoperable adenocarcinoma of the pancreas with liver mets. The fact her recurrences never came back to those primary locations and made it to her brain, statistically only 3% ever reach this and it was a huge blessing she had no pain and had not taken any pain meds since prior to September of this year. It was a peaceful passing I would wish for anyone including myself.

Thank you for all your support on the forum since 2011.

~jeffB
I never really got an explanation from the specialist at UCSF when he first used the term "dead scar tissue" when he referred it to the tumor on the body of Annie's pancreas. It was 5cm and two lesions measuring less then 1cm each on her liver when discovered in July 2011 and by December 2011 the pancreatic tumor shrank to 4mm, lesions on the liver had vanished. Incidentally, after only three treatments of Folfirinox, her liver panels were normal. By May 2012 it could no longer be detected on the PET/CT. He declared she was NED or no evidence of new or progressive metastatic disease and no tumor recurrence and stopped the Folfirinox chemo. Annie enjoyed nearly 2 years of remission. During this time she had quarterly CT scans which were all NED and her cancer antigen tumor markers or CA19-9's remained below 38 the entire time while off chemo. I would have to say the term "dead scar tissue" is more literally understood today as we are approaching 3.5 years since diagnosis and her liver and her pancreas are both clean with no evidence of disease.

Three years ago I did not possess high expectations for prognosis of this disease and today, 39 months later I still do not possess high expectations but to enjoy every moment given to us to be together.  Here is our story:

My wife Annie who was diagnosed with inoperable stage 4 adendocarcinoma of the pancreas with liver metastisis in July 2011.  She tolerated with exceptional results 19 rounds of folfirinox from August 2011 through May 2012 with no breaks and did I ever expectd it?  NO but this gave her almost 21 months of remission with no evidence of progressive metastatic disease.

Her cancer antigen CA19-9 scores went from 71,000 to below 17 and remained there until late 2013. She stopped all treatments in May 2012 with only quarterly CTscans and monthly blood work performed.

Her first recurrence came in January 2014 but not to the primary sites of her cancer (body of the pancreas and liver) which remain to this day clear.  Did I expect this?  Yes!  The recurrence came to the lumbar region of her spine. Because she had suffered from uncontrolled diabetes in late 2013, fluid in the lungs by January 2014 and horrible lower back, hips and leg pains losing almost 15-20 pounds in a matter of weeks she began a modification of folfirinox called folfox (minus irinotecan the strongest component in the folfirinox cocktail) with great quality of life and good results.

After 3-4 months of folfox, PET/CT could no longer dectect the cancer in her spine, liver and pancreas remain clear. CA-19's were at 9,000 in January of this year, on folfox came all the way down to 850, then last August began to climb at a rate of 100-200 points every two weeks. Did I expect this?  Yes!  But amazingly, a CTscan in September discovered her liver, pancreas and spine continue to be clear but the two nodules in her lungs which were originally detected sometime in late 2012 have now started to grow. The 8-9 months on folfox provided her with exceptional quality of life. We moved to a new home, she designed, built and cultivated a new backyard patio and garden and helped me furnish and decorate just under 1700 square feet of living space.

Because of the change in the lung nodules we moved off of Folfox to Folfiri (5fu and irrenotecan) which she started 3 weeks ago. Hoping this will keep the nodules from increasing in size and multiplying. The added irrenotecan which she has not tasted in almost 30 months is a tough one. She has no good days after her first round and yesterday she just finished her 2nd round and still feels weak. She now weighs only 81.8 pounds having lost about 3.5 pounds since the added irinotecan. Hoping she will be better acclimated to folfiri and show signs of feeling better soon. We should know after a few more treatments if folfiri is effective and if not, we will most probably transition to a completely different cocktail, one which she has never had such as Gemcitabine/Abraxane.

 Annie and I will celebrate our 35th wedding anniversary with a dinner engagement this coming Sunday. She and I will take a 4 week vacation to the Philippines from December 5 through January 8 and in March of 2015 we will welcome our first grandchild. We just found out it's a GIRL! Never did Annie and I ever expect to share the opportunity to embrace, care and love any grandchildren "together" in this lifetime. Did I ever expect this?  Never in our wildest dreams! 

JeffB

 

No, but Annie who is turning 61 on December 1 had acute pancreatitis at the age of 19 and almost died from it.  In 1988, she was gestationally diabetic during the last trimester of pregnancy with my son and in 2006 became a type 2 diabetic and started Metformin.  In 2011 as you may already know, was diagnosed with inoperable stage 4 adenocarcinoma of the pancreas with liver mets.  She is now 39 months post diagnosis.  19 of the 39 months she's been on treatment.  She was NED for about 20 months from May 2012 to January 2014. 

Indeed!  My wife Annie was diagnosed with inoperable stage 4 adenocarcinoma of the pancreas with liver metastisis in July 2011.  Annie had a 5cm tumor on the body of her pancreas and two less then 1cm lesions on her liver.

While her oncologists and pancreatic specialists at both Stanford Medical Center and UCSF contend there is no known chemotherapy capable of doing what it did to my wife, the fact is she is living today 39 months post diagnosis and both her liver and pancreas are clean.

She tolerated 10 months/19 rounds of treatments without interruption. She never needed to take a break as her blood work always indicated she was tolerating it well. After her third round of treatment which she started in August 2011, her liver panels were normal. After 4 months of treatment her first CTscan could no longer see the lesions on her liver, both just vanished. The 5cm tumor reduced in size to 4mm.

She continued for another 6 months of folfirinox, her tumor markers which were at 71,000+ at diagnosis were down to 17, her second PET/CTscan in May 2012 showed a clean liver AND the 4mm tumor on the body of her pancreas became 'scar tissue' with no metabolic activity. She was declared to be with no evidence of new or progressive metastatic disease and no tumor recurrence. She enjoyed nearly 2 years of remission with no chemotherapy treatments only taking Metformin for her type 2 diabetic condition and Epivir to keep her liver healthy.

So to answer your question, my wifes not only shrunk completely but it became dead scar tissue. Her tumor and liver have shown no evidence of new or progressive metastatic disease since May 2012.  There are studies as of around 2012 which show some pancreatic cancer patients who took Metformin had better results with its use with standard chemotherapy.  Apparently the Metformin targets cancerous stem cells not eradicated by chemotherapy and also prevents tumor recurrence.  They are using Metformin with non-diabetic patients with all stages of cancers and not just cancers of the pancreas. 

RE: Silly question?

by maxxschiken - October 14, 2014

My wife's very first recurrence was last January when they too found a lesion on the lumbar region of her spine. This came after being in remission with no chemotherapy treatments for nearly 21 months. The lesion caused excruciating pain to her lower back, hips and thighs where the strongest narcotics were taken but provided only a little relief. The narcotics were so strong they caused havoc to her digestive system where little food could be kept down. She began Folfox chemotherapy, a modification of Folfitinox minus it's strongest component irenotecan in mid-January. After only three rounds the pain vanished and by her 4th month of treatment, PET/CT could no longer locate the lesion. We optioned against radiation with hopes the chemo would shrink lesion and it did. Her quality of life on Folfox from January to September was excellent.

RE: Silly question?

by maxxschiken - October 13, 2014

oh...i just went back and read your previous posts.  So your CA19-9's went all the way down to 80 or lower and now are back up to 9000.  I'm sure if your current chemo isn't effective at bring this number down they will change it.  Has the radiation to the hip bone cancer provided you the pain relief intended with this type of treatment? 

RE: Silly question?

by maxxschiken - October 13, 2014

Let me see if I'm understanding this correnctly.  So you have been on 5Fu alone with no other components for 11 months and this treated the pancreatic tumor correct?  Is the cancer in your hip bone the reason why you are diagnosed with stage 4?  At your initial diagnosis, where was the cancer other than your pancreas?   

If your cancer antigen's are still at 9000 where were these numbers 11 months ago?   

On Oct 09, 2014 5:19 AM Hoomana wrote:

Thanks everyone for your awesome insprinational responses. My brother got a great report this morning from the hospital saying his tumor is not the bad cancer but the good or better cancer and they could probably operate in a few weeks. THEN he goes into the hospital for a meeting about chemo, and it turns out they did two biopsy. One came back as the good cancer that was the tumor, his tumor is large and at the head. The second biopsy was tissue around the pancreas or something and that result will be in tomorrow. How confusing! I am the youngest of six and our family is huge with amazing faith and a ton of support. That alone is the blessing in it's self. We are at early stages as far as information. My brother is still walking five miles a day and playing golf. He is changing diet and stuff but we are all still numb from all the news. We live in Kauai Hi, so recover and chemo will be good as the weather is amazing and it is so beautiful, you could spend more time outside enjoying nature. HIs doctor is at city of Hope. this is our second Oncologist. the first was down south. I pray for all of you so much. I pray for my brother and I hope one day he can join this page and help others. I will keep you posted!

Hope your brother gets better!  I spent lots of summers in Hanamaulu growing up.  My aunt worked at Sharon Sue downtown in the late 50's and 60's and my uncle worked at the golf course.  I used to eat at Saimen Sam's a lot and oh, the box lunch back then.....nothing compared to the junk you find here on the West Coast at these "wanna be" hawaiian fast food joints!  I literally hate those places.....  I miss Kauai ... I miss Hawaii...

oh okay... i didn't realize her blood counts were down and she was getting the Lunesta.  so this explains cutting back which is what her body most importantly her bone marrow to recover and give her the strength to continue treatment. 

from about my wife's 6th month of folfirinox treatment until her 10th and final month of that regimen, while her blood work was always good her oncologist still gave her Neupogen shots which has the same effect and similar side-effects as Lunesta.  My wife had this nagging bone and muscle aches during her week off treatment when the shots were administered 3-4x in that week off chemo.  We are in California and at the time our oncologist prescribed medically approved cannibis which we used briefly and with good results took away all of the discomfort from the shots.

oh btw, what is the name of the trial?  I seem to have missed it somewhere.... I thought she was on folfirinox or gemzar/abraxane...

jeffB 

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About maxxschiken

Caregiver
Pancreatic Cancer
Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diet, Emotional Support

Greetings! My name is Jeff, primary caregiver to my wife Annie seen in the profile picture taken on last October 24 in Los Angeles celebrating our 34th wedding anniversary.

On July 7, 2013 we celebrated 2 years post diagnosis with inoperable stage 4 adenocarcinoma pancreatic cancer and it has now been over 1 year since stopping all treatment with stable full liver panels, CA19-9's and CT scans revealing no evidence of new or progressive metastatic disesse and no tumor recurrence. Annie will be 60 years of age this coming December 1, 2013.

A timeline of her journey thus far:

07/2011 - wife at age 57 diagnosed with inoperable stage 4 pc; 5cm tumor/body, two spots on liver, CA19-9=21,000+

08/2011 - begins folfirinox chemotherapy at a rate of one 48hr infusion every other week.

01/2012 - CT: spots on the liver gone, tumor now 4mm, CA19-9 normal at 17.

06/2012 - completed 9.5cycles/19 sessions of treatment. 4mm tumor necrozed/scar tissue with no metabolic activity. ALL CHEMO STOPPED. CTscan reveals No evidence of progressive metastatic disease and no tumor recurrence. All liver panels normal and CA19-9 stable at 35. The only medication taken is Metformin to treat her Type 2 Diabetes.

09/2012 - CT: NED with all liver panels normal and CA19-9 stable at 35.

12/2012 - CT: NED. Runs a 10 kilometer race.

02/2013 - CT: NED with all liver panels normal and CA19-9 stable at 35. Re-instated fitness center membership and now worksout 5x weekly 3 hours daily.

03/2013 - Consultation at UCSF with Dr. Andrew Ko who after being reminded the prognosis he gave us in July 2011 of 3-6 months of life left without treatment said, "you proved us all wrong, you are doing amazingly well, continue to LIVE LIFE."

On December 1, 2013 Annie will celebrate her 60th birthday. A milestone considering she would not have lived too much passed her 58th birthday with this prognosis and without treatment.

Our journey can also be found at www.cancerforums.net username: hiyasofsj and I also contribute in the John Hopkins University pancreatic cancer forum.

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