Pancreatic cancer- increased CA 19

[Sathya]

My mom got diagnosed with pancreatic cancer last year in September. Her first Whipple procedure was not successful. The doc could not resect the tumor since it was big. Then followed by four cycles of chemo, her tumor shrank, and she was fit enough to do a second surgery. The doctors did the Whipple procedure, and they could remove the cancer tumor. 

After a month post-surgery, she got two cycles of chemo. After chemo treatment, she waited for one month. Recently she took a blood test, Pet/CT Scan, and MRI. 

The Blood results came now her CA-19 Level is very high(450). Also, she has severe back pain, appetite loss, and fatigue. 

I wonder if these are the post-surgery side effects or if cancer cells are spreading again. 

Can anyone know the reason for this? 

[kj]

Hi Sathya

what was your Moms CA-19 marker before surgery,the results of her scans will give a better idea of what is happening ,after her Whipple pain  and appetite loss can occur after surgery ,her marker is high but until results are known hoping that it’s a hiccup in her recovery.Fingers crossed.

[Sathya]

Hi Kj, 

   Thank you for your reply.  My mom's Pet/CT Scan result came two days back.  Her cancer has spread to multiple places; she has had terrible back pain and discomfort for the past month.  It all started when they stopped the chemo treatment. Now she has multiple lesions on her spine, lungs, and liver. 

  The doctor recommended radiation treatment for her back to reduce the pain.

The lungs and liver, they can't treat with chemotherapy anymore. The doctor said they were going to try immunotherapy to control the disease, but he said it might work or might not. 

I'm feeling unfortunate. That I'm watching her going down every day. She is a fearless and strong woman. 

 She had never cried like this before today; she struggled a lot. I hope this radiation will help her with the pain. It's been almost a year since she slept well. I wish her to get good sleep one day at least. 

[kj]

Hi Sathya

Im very sorry to read of the spread of cancer to your Mums body,I hope the radiation can help her pain.

Not sleeping does not help at all ,a very difficult time for your Mum and family especially watching her daily and feeling helpless,does she have palliative care involved for the pain and circumstances.

I hope a way is found to help her cope with pain and sleeplessness.

[Opacity]

Hi Sathya.  I was diagnosed with pancreatic cancer in September last year, just like your mother. I was lucky to be diagnosed early in stage two.  I had an upset tummy, dark urine and no appetite but being 77 at the time I didn’t rush off to the doctor.  My daughter dropped by to check on me and noticed I was very yellow. She took me to the doc right away and he was shocked enough to send me to the ER of our local hospital at once. They did a blood test and an ultrasound before transferring me to a larger hospital by ambulance. I thought I had viral hepatitis and they were fussing  needlessly!   But a CT scan showed I had pancreatic cancer which had blocked the bile duct to my liver and spread to the four closest lymph glands.  They inserted a stent into the bile duct and kept me in hospital for a week as I had tachycardia (racing heartbeat) and a temperature.

During October,  November and December I had three bouts of very strong chemo because the plan was to operate (Whipple) if the cancer had retreated to the primary site. However, I reacted very badly to the chemo with severe gas, diarrhoea and horrendous intestinal cramps.  I wanted to die it was so bad. After researching the Whipple procedure and learning how similar the after effects were to my chemo experience, I decided not to have the operation and didn’t accept the fourth chemo bout then had five weeks of daily radiotherapy which was easy except for fatigue. A second CT scan showed the tumour had shrunk to just 2.5cm long and retreated from the bile ducts and lymph glands. They offered the Whipple procedure again but I don’t think it’s worth the complex after effects and low success rate.  Now I take CBD oil only, as there is an outside chance it might slow the cancer down.  I am due for another CT scan in three weeks so I’ll give an update then.  
PS.  My State (South Australia) has recently passed euthanasia laws which I can access for “assisted dying” once I reach stage four. I will definitely take advantage of that because I know how bad I’ll feel at that stage. I wish you and your mother all the best. (My own daughter has been amazingly supportive.  I now live with her and  my three young adult grandsons.)

[Sathya]

Thank you for your reply and for sharing how you deal with this cancer. I'm sorry you're going through a lot of pain like my mom. Great that you have family members who support you in this situation. I hope you will feel better. 

Recently, My mom started her Radiation. Doctors are planning to give her ten seatings.   She is done with six looks like it's not very effective. She is still in a lot of pain. 

    It's hard for me to see her like this. My entire family is helping her, including my 88-year-old grandma. I'm hoping that she will feel better soon. I appreciate your support. 

[Sathya]

Hi Kj,

     Thank you for your reply. My mom is getting her radiation now, along with some pain medication. Next week doctor is planning to get a CT scan to check her progress. We will arrange further things based on her health condition. I will update her progress. I hope this will help many people.