dhdebbie's Message Board Messages

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Can anyone tell me if they experienced high liver enzymes/bilirubin while on gemzar/abraxane?  Hubby had treatment yesterday and his blood work showed an elevation in the bilirubin and liver enzymes.  The doctor adjusted (lowered) the dosage of the chemo and they told him he needs to be drinking alot of water.  Has this happened to anyone?  What did they do to help you?  Thanks. - Debbie

On Jul 24, 2014 12:08 AM Bryan51 wrote:

Please forgive me for not posting earlier and it is with a heavy heart that I have to inform you that Bryan passed away peacefully on June 15, 2014. I want to thank all of you for being his online friends and for all of your compassion and support through his battle with pancreatic cancer. Although he never met any of you in person, he thought of you as his friends and was touched and grateful for the personal relationships that he shared with many of you. I wish you all the best with your continued battles with this horrific disease. With much respect, Karen Holmes

So sorry to hear of this news.  Prayers for you and your family.  - Debbie

My husband had two months of Folfirinox (every other week) and did not get good results at all.  In fact, during the chemo, his tumor grew and he developed lesions on his liver.  He is now on Gemzar/Abraxane and is scheduled to be re-staged with PET scan and CT scan in two weeks. He has had three cycles of this chemo (three treatments weekly and then a week off = one cycle).  Good luck and know that there are alot of people here to support you and share experiences.  - Debbie

On Jul 09, 2014 1:11 PM Jess24lynn wrote:

Folfirinox was not effective for my mom. Looking to hear from people with this same experience with folfirinox and to hear about success with the gemcitabine/abraxane regimen

Folfirinox was not effective for my husband, either.  In fact, his tumor grew while on it and he developed liver lesions as well.  Very disappointing for both of us because he also suffered from that chemo and then because of it not working, they took the Whipple surgery off the table for him.  He is now on the gemzar/abraxane regimen.  He has had one cycle and will undergo another cycle (one a week for three weeks each cycle) before they do a PET scan and CT scan. He feels pretty good on this regimen.  However, he did have a minor stroke about a month after the first cycle.  They say it was not from the chemo, but who knows?  Let's hope we all get good news with the gemzar/abraxane.  Keep in touch.

On Jun 26, 2014 3:32 PM pinkliz wrote:

My husband was diagnosed with PC Stage IV,  May 1, 2014.  He just finished his second round of chemo.  He is now complaining of constant fatigue.  I understand that the chemo and cancer can cause fatigue....I am just worried that something else could be going on?

My husband is also in the middle of his second chemo regimen.  He is extremely fatigued.  The slightest thing exhausts him.  He gets frustrated and upset.  

On Jun 17, 2014 11:58 AM maxxschiken wrote:

On Jun 17, 2014 1:50 AM Jess24lynn wrote:

Looking to hear about people's experience with folfirinox. Was it effective? Has anyone been deemed NED off this treatment alone? Anyone with PC w/ mets to lungs only have any experience with folfirinox? My mom was diagnosed 2 months ago with stage 4 PC with mets to her lungs. She will be having her 4th folfirinox treatment next week and her 1st scan July 8th.

My wife Annie was NEVER a candidate for surgery as she was diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer with mets to her liver back in July 2011 at the age of 57. Her first PET/CT found a 5cm tumor on the body of her pancreas and two lesions on her liver measuring just under 1cm each along with lymph node activity. They gave her 3-6 months without treatment and possibly 8-10 months IF she tolerated treatment. Not if the treatment worked but that the treatment itself may cause her to expire. Well here is some HOPE for you. This coming July 4th weekend will mark Annie's 3 year anniversary since diagnosis of which almost 21 months of this time was spent in remission from May 2012 to January 2014 with no treatment with the exception of Metformin to treat type 2 diabetes and EPIVIR (lamivudine) for her liver and only quarterly CTscans which found no evidence of new or progressive metastatic disease and no tumor recurrance.

Our primary oncologist with this prognosis wanted Annie not to suffer with aggressive chemotherapy.  She wanted my wife to be comfortable and if possible not even lose her hair.  She recommended Xeloda with radiation.  Annie told her oncologist losing her hair and suffering from treatment was the last of her worries and she had nothing to lose by requesting for a second opinion.  We found Andrew Ko M.D. who has specialized in advanced pancreatic cancer research from Stanford Medical Center in the 90's and for the last 10 or more years has been working at UCSF with Margaret Tempero M.D. who paved the way for clinical trials with newer forms of cocktails to treat later staged pancreatic cancer.  Annie chose folfirinox in August of 2011 and tolerated 19 rounds in 10 months of treatment without any interruption. It was the perfect chemo for her body as her white blood cells never dropped requiring a break from treatment. 

They also discovered her liver panels were normal after only 3 rounds of folfirinox chemotherapy.  Really now? Let's be honest can chemo alone do this???  The lesions on her liver vanished, tumor shrank to 4mm and markers were normal after about 6 months of treatment and CA19-9 tumor markers which were as high as 71,000+ were below 38. After an additional 4 months of treatment, the 4mm tumor became scar tissue with no metabolic activity and her liver remained clear. All treatment was stopped in May 2012.

It was not until this passed January when her 2nd PET/CT discovered metabolic activity in the lumbar region of her spine. This explained the excrutiating pain she was in where heavy narcotics were needed for only some pain relief in her lower back, hips and thighs. She developed fluid in her lungs requiring a thoracenteshsis, almost went into a diabetic coma with numbers reaching 700, lost almost 20 pounds and was hospitalized for a week. She was so weak I literally had to carry her, take off and put back on her clothes and bathe her. I honestly did no think she was going to make it! She started folfox (folfirinox minus irinotecan) in mid Jauary and almost immediately her pain disappeared. By her 2nd round of treatment, the pain vanished and since has never returned.

After 10 rounds of folfox, her tumor markers as of yesterday are down to under 400 up from 9000 back at the beginning of the year. Her last PET/CT taken at Stanford Medical Center last week when compared to the one taken last January now shows no evidence of the disease. No metabolic activity anywhere. No new or progressive metastatic disease and no tumor recurrance in her spine, liver or pancreas! The tumor on the lumbar region of her spine can no longer be detected.

Annie will continue folfox until her markers are below 38 and once this is achieved, another CT scan with hopes for another long period of remission and break from treatment.

In April we moved to our new home and even while on folfox chemo she's been active decorating, furnishing and designing her front and back outoor living spaces. She's unstoppable with more energy than me! She wasn't suppose to reach the age of 58, last December she turned 60. Her healthcare team at Stanford say she's a medical anomaly.

I believe it is important to get opinions from high institutions of medicine but once a recommendation is made, any local oncologist should be in the position to follow any newer standard/protocol medical specialists will recommend. 


Wow, your reply about Folfirinox was so encouraging to those people undergoing treatment with it.  Unfortunately, my husband was not so lucky with that cocktail.  While he underwent two months worth of treatment prior to his Whipple, the tumor actually grew and a lesion appeared on his liver.  The lesion took the Whipple off the table and we decided to get another opinion.  He is now treated at another hospital and receiving Gemzar/Abraxane.  He had three weekly treatments and then suffered an embolic stroke.  Although minor, he was left with some cognitive deficits.  He spent four days in the hospital and was released after confirmation of the stroke.  He is back on treatment for three weeks and then will have another PET scan.  The irony of all of this is that even though his CA-19-9 went down dramaticallly after the Folfirinox, his tumor grew.  I guess everyone responds to each drug differently.  Glad it worked for your wife and I wish her continued good health!!  God bless you both.

Has anyone had any experience with strokes during chemo for pancreatic cancer?  Please let me know.  Thanks.

So we found out that hubby had an embolic stroke that was causing his confusion and loss of memory. Physically he is fine, but has an altered mental state. Has this happened to anyone while on chemo? He is on Gemzar and Abraxane. I am wondering if he will have a full recovery. This is making him very frustrated because he realizes that he cannot remember things. He even forgot that he had pancreatic cancer. Please let me hear from anyone that has or had a similar experience.
I am getting desperate. Hubby still in the hospital for cognitive issues. Doing all kinds of tests. Growing blood and spinal fluid cultures because of the high white count. CT with and without contrast do not show anything. Theybare giving him iv antibiotics and antivirals as a precautionary leasure. There is a slight improvement, but he is still having issues remembering and reading. Had an MRI yesterday and we will get the results today. I am scared this will be a permanent thing. Anyone ever experience similar things? Were they transient or permanent?

On Jun 03, 2014 1:50 PM shelby1 wrote:

Hi, My husband was on the Gemzar/Abraxane and had a slight case of pneumonia within a month which seems to be a known side effect. Came on real quick.Slight "" target="_blank" rel="nofollow">http://quick.Slight " target="_blank" rel="nofollow">quick.Slight fever only.  Also he did have episodes of confusion the longer he was on it. 

Can you describe his confusion and also did it pass or was it a permanent thing?
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About dhdebbie

Pancreatic Cancer
Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Emotional Support, Insurance, Side Effects, Spiritual Support, Supplements

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