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LULU and a Whipple Option


Our journey began 5/19/04, when I had scheduled Mom for her 2nd cataract surgery for the 2nd eye. Since I live 6 hrs north of her, I had planned to stay a week with her. Its now 6/8/05 and it has been one long week too of staying with her (and visiting my former home 1 - 2 days/mo). While in the Opthamologist's office with Mom and after she had been given pre-surgery eyedrops the day before, I noticed the far corners of her eye whites were yellowed and commented to the nurse that those eye drops sure caused eye whites to turn 'yellow'. She looked and said it wasn't the drops, looked like 'jaundice' and so scheduled Mom in with the Primary Care Doctor 3 days after her cataract surgery.

Her doctor immediately ordered bloodwork from the hospital next door around 4:00 PM that day and by 6:30 PM was on the phone to me 'yelling' to quickly bring Mom in to the nearby hospital as her bloodwork indicated she could be in a life threatening situation.

A ultrasound the next day showed a mass on her pancreas head and she was immediately transported to a larger hospital for additional tests, which confirmed she had a 2.8 cm tumor on the head of her pancreas. Since the tumor was causing bile duct obstruction preventing drainage of the bile, a plastic stent was installed at this time too. At this point, she had lost weight (128# to 116#) and some minor skin itching too. She had been having some recent trouble too with her appetite but thought it was likely apprehension over cataract surgery.

The tumor appeared resectable then and so she was scheduled 6/23/04 for a 'possible' Whipple procedure. After the surgeon said he came close to proceeding, but stopped due to some SMA encasement, saying at this point she was unresectable but did do a gastrojejuny for the bile duct obstruction compression of the tumor and had her immediately follow up with 6 weeks of daily 5FU chemo and concurrent radiation. At this point I asked the surgeon about obtaining a second opinion, and he said that I could take her to any other surgeon in the country, but they would all say and treat her the same as he, mentioning he had trained at New York's Memorial-Sloan Kettering Hospital, which was #1 in the country for P/C also and I suppose this was to help us feel comfortable with his expertise on her diease. So we did not pursue a second opinion then.

Following the above and a 3 week rest period, she had a CT scan for restaging. I do recall the Chemo Oncologist and Radiology Oncologist complaining about 'scar tissue from radiation making scans difficult to interpret', but the surgeon again stated she was 'unreceptable' and prescribed Gemzar for palliative treatment. She asked him how much time he figured she might survive and he said 'only the big guy upstairs has that answer.

She tolerated her chemo/radiation well with very minimal side effects, other than minimal fatigue and loss of appetite as nothing tasted good and weight dropped down to 98# at end of radiation. However, with the follow up Gemzar (8/04 up to 5/05), maintaining weight at 110'. Only side effects were fatigue and 'up and down' lowered red (sometimes white) blood counts, but anemia shots and 2 blood transfusions over this extended period solved this.

Her gastrojejuny failed in December '05 and a metal wall stent was inserted over the bile duct, with a F/U appt to return 5/05 for a routine endoscopic stent clean out. However, had to admit her in emergency for this 4/05 when she developed jaundice and intense pain from the bile not draining properly where the gastrointerologist cleaned out a very 'dirty and clogged' stent plus installed a second one 'full length' over the prior one too. At this point he advised me that longer-term usage started causing more and more complications, some unknown too. Further, the bile duct skin starts growing thru the metal mesh and that once installed, he can't remove them and there was nothing more he could do. We were never given any choices (plastic vs metal) nor were we advised of this prior to installing the metal stents either.

Then I advised the gastro doctor that I was in the process of obtaining a second opinion from one of the top cancer treatment centers, high volume, specializing in P/C, re Mom's possible candidancy for a surgical option. He then said surgery of P/C patients didn't do any good as they didn't last any longer anyway than if treated with chemo. He further said that my Mom was too old and physical condition was the reason they didn't/wouldn't do surgery there (and that he had talked to the surgeon, chemo-oncologist who were all in agreement too). I told him her physical therapist had stated she was presently in prime condition for surgery, plus larger volume treatment centers preformed surgeries on patients much older than Mom too and we were preceeding forth for a second opinion.

At this point I got VERY ANGRY with the gastro doc's attitude and furthermore the surgeon too. (Her oncology doc's for chemo and radiation were wonderful however, but not trained in diagnostics and dependent upon surgeon and gastro doc's for this).The surgeon had only told us 'unreceptable' due to tumor encasement of SMA and never mentioned 'age' or 'physical condition status' as reasons. In fact, last Feb. '05 I started getting copies of her CT scans for myself and reading them too and started see 'no evidence of mass as in previous CT's' without anyone there ordering additional tests (such as EUS which I researched and found it stated was more accurate for predicting artery/vein involvement that CT's. And so, I had had to DEMAND & INSIST the gastro doc do a EUS too in April '05 for tumor and vein/artery involvement status. It only showed 'probable vein involvement due to proximity' and 'good fat plane between SMA and tumor but still close'.

I had found in my research about 2/05 too, and confirmed with a local gastro doc, that CT's were not always accurate for diagnosing vein/artery involvement; that EUS was more accurate for this and wondered why did the surgeon never order this too? Also, I had also found that if tumor encasement was less than 25% of SM artery diameter that patient was resectable and if more than 50%, unresectable. And so I started quering Surgeon if Mom' encasement was less than 50% or more than 50% and his only answer was 'Oh well, there's varying philosophies on this' and/or 'I can show you on her film' but never was available numerous times to show me on the film' and so therefore I begin to doubt it even existed on the film.

We made an appt. to see a surgeon at a high-volume cancer center May 5,'05 and the surgeon was very thorough re the procedure and the pro's/con's too. She is set now for the Whipple procedure on June 14th, '05 now. Mom, my sister, brother-in-law, and me, are all now highly apprehensive, but yet grateful to have, one year later, a possible cure option via surgery soon for our Mom.

This board has been one of the most wonderful things I have found for sharing. I wrote this lengthy 'book' hoping it might be helpful to someone else out there, who's experiences might be somewhat similar. But by all means, always do get a second opinion and preferably from one of the 13 highest-volume treatments centers in this country too, which specializes in the 'P/C Beast'.

My best wishes to all of you out there.

Betty.....Lulu's daughter




Posted 06/07/2005 07:55 am by Lulu's daughter....Betty
E-mail Address: Beetlebayleeville@yahoo.com

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