Journal

Journal entry by Donna Smith

On December 31, I had my 2nd treatment. My landriotide shot was uneventful, a little painful, but not much drama issued by me.

Am finally in somewhat of a routine and thankful for it.  I function much better when I am in a routine and don't need to keep track of so many things.

Love to you all.

Donna
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Journal entry by Donna Smith

Sorry to be a bit late posting this.  Last Monday the 3rd of November, I was injected with  my first treatment.  (Lanriotide).  I will receive this injection every 28 days until it stops working or the tumor shrinks.  At that time there will be another decision as to what treatment is best for me.

This week was a little difficult.  I spent a lot of time sleeping.  Wake up at 4 AM with the dog, walk her,
have breakfast, make coffee for Jerry.  When Jerry wakes up about 7:00 ish, I do the necssary house work, make bed, pick up all out of place pieces, start laundry if necessary.  By the time these tasks are completed, I am ready for a nap.  Usually awake by 10:30 or 11. Take Sol outside.    Fix lunch, have lunch, pick up Kitchen and dishes, change clothing in washer to dryer.  

Take another nap.  Up about 3:30 - 3:40.

Fix dinner, eat and relax until 8:00 bedtime.  I really do sleep during all those naps.  Perhaps after I have had a few more shots, I will not require as much sleep?  There has been some pain this week also nausea.  I have medications to deal with all the symptoms.   I have experienced a new symptom, called Flushing.  Your face, neck and or chest gets very red and hot.  It doesn't last long, usually about 15 seconds or so.  I can deal with this symptom.  All the symptoms comprise Carcinoid Syndrome.  There is so much to learn about this cancer!!!  Hard to understand all the information much less absorb the terminology etc.

As the week has gone by, the carcinoid syndrome symptoms have gotten less severe.  SO!!!!! Perhaps this means that the tumors are shrinking!!  I certainly hope so.   My next shot is scheduled for 12/31/2018.  I am hoping that everyone who looks at caring bridge to get their updates, has a Wonderful Christmas and a Beautiful New Year.!!!!!!!!!!!!!!!!!!!!!!.  Sending Love your way.............

Donna



 

 

Journal entry by Donna Smith

On November 19, 2019 I saw Dr Trickalinos (oncology).  He agreed with Dr. Hawkins (surgeon) that I am not a candidate for surgery.  They agree that if they can not remove all the cancer in the pancreas and the liver, that due to the difficulty of the surgery and the recovery I would be better off to treat the cancer medically.  I am a little disappointed but am ok with the decision.  So I start my treatments on December 3, 2018.  They are starting my treatments off using Lanreotide.  It possibly shrink the size of my tumors. I have a treatment every 28 days. After 3 or 4 treatments a Gallium 68 PET scan will be redone to check the progress.  If there is good progress, I will continue on Lanreotide until it no longer works. When that happens we will try another drug, or chemo or radiation.  Looking forward to starting on Dec.3rd.  Happy Thanksgiving to everyone,  Love you all... Donna

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Journal entry by Donna Smith

We had a visit with the surgeon and he does not know at this point whether or not I will be eligable for surgery.  A lot will depend on the 68 gallium pet scan scheduled for Friday 11/16/2018.  There are "cysts" on my liver. If they turn out not to be cysts but malignant tumors, I may not qualify for surgery. The surgeon (Dr. Hawkins) believes that if he can not remove all the cancer, it will not be a successful outcome for me. So, again we wait for the remaining two tests.

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Journal entry by Donna Smith

We should be within a few weeks of being finished with the testing.  Then the team can meet and decided what the best treatment plan would be the best for me and my little friend (the tumor.).  

On November 1, 2018 I have an appointment to meet with the surgeon to review what he thinks is best. should he take the tumor out? should he do a whippel procedure?  Or not do anything at all but treat with chemo and a radiation procedure to target the tumor.  Hopefully he will share his ideas with me.  If he doesn't volunteer the info, I will be pushing him for it.  I am getting tired  of not knowing!!!

On November 16th 2018, I will have my gallium 68 dototate scan.  That is the newest scan to isolate where cancer is located in your entire body (if any additional tumors or metastases exists).

On November 19, 2018 I have my second appointment with the medical oncologist Dr. Trikalenos.
Perhaps between he and Dr. Hawkins, I might have some form of treatment in mind.  After that, I will begin treatment (surgery, chemo, radiation targeting or whatever). Anxious to get started so I can KICK SOME BUTT.

Take care everyone,  Love to you all.

Donna

Journal entry by Donna Smith

This journey began on September 12, 2018, with a trip to St. Lukes Chesterfield emergency room. I had extreme stomach pain on both sides.  A cat scan was done and I was diagnosed with a build up of stool.  Was discharged, went home and took a bottle of Mag Citrate, all was well, or so I thought.

The next day, the radiologist from St. Lukes called me and said that I had a mass on my pancreas and needed a MRI.  My primary Dr. sent in an order and one was scheduled for the following week. Had the MRI. Dr Boesch (My primary DR.) called and left me a message to call him at his office.  When I called back, his secretary told me that I had tumor in my pancreas that had metastasised in to my liver, and that I would need an endoscopy to see if they could get a biopsy.  

Dr. Mathews, my gastrointerologist, performed an endoscopy on September 27, 2018, but was unable to get a biopsy.  He told me that I would need to go to Washington University School of Medicine - Barnes Jewish Hospital Siteman Cancer Center  (WUSM BJH Siteman Cancerr Center to get a ESU (Upper Endosonographic proceedure) to obtain a biopsy of the tumor in the pancreas.

The ESU was scheduled on 10/5/2018.  The procedure led to the following findings: a Duodenal deformity due to extrinsic compression from duodenal mass. A few lesions were found in the left lobe of the liver consistant with metastatic disease. A cystic lesion was seen in the pancreatic body.
Dr. Mathews called me to let me know that I had a neuroendocrine carcinoma that had metastasized into the liver, and that I needed to see a medical oncologist and a surgeon.

I did a lot of research on Dr,s with experience in the issue I had.  I chose Dr. Nicholas Trikalinos, an associate professor at WUSM who specializes in Neuroendocrine carcinomas.  I chose for my surgeon, Dr. William Hawkins who has experience with NET (Neuroendocrine tumors).  He is also the dept chair of surgery at WUSM.  I am pleased with my team and look forward to a good relationship and the best of care.
Donna’s Story

Site created on October 23, 2018

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