1

(187 replies, posted in Hospitals)

Kentucky Jack-

We, too, sought another opinion because I felt Dr. Tan was "too" conservative...he certainly treated us and warned us it may kill my dad (and almost did twice in five weeks) but that is the job of an oncologist! We did ultimately switch to Dr. Andrea Wang-Gillam as primary oncologist for my dad from Dec 2010-March 2011. She was proactive in all treatment and we also sought a fourth opinion in Dr. Wells Messersmith (University of Colorado Hospital , Aurora) to ensure there was no other tx. It seems between Barnes and USC there is little on the i-70 corridor in between! He assured us he would have recommended the same course of action and treatment.My dad passed away shorthly after the Colorado consult, so we were never able to follow up. I loved Dr. Messersmith's bedside manner and thought into the consultation!!! If anyone ever wants further details on Barnes or University of Colorado, feel free to email me at staceyhighsmith@gmail.com.

Stacey

Mark,

I am so sorry to hear about the loss of Lori. I was the caretaker for my dad for 14 months. I hope your family surrounds you and you can relish in the memories

Stacey

3

(8 replies, posted in Introductions!)

heartdoc,

I am sorry for the progression. My dad was 62 and in otherwise fabulous health, although retired for seven years. He had a success Whipple, but only made it 13 months, 1 week. We had five opinions and looked for every option possible. We never gave up hope! We were so lucky and only had 68 hours of hospice, which was a blessing to us and my dad.

All the best to you and yours. My daughter, who is 5, understands Papi is no longer here on Earth but stills asks about him...

Stacey

4

(14 replies, posted in General Discussion)

Phil passed away this morning...
He hadnthree days of hospice and was not in pain.

Stacey

5

(11 replies, posted in General Discussion)

Pam-We have a shower chair, cane and walker from rehab last year. You are right, it is huge and will help in the days to come.

6

(11 replies, posted in General Discussion)

The last eight hours have been a miracle! I have taken half the weight of my world off my shoulders and I think I have exhaled more today than in the last year. I almost am pained I did not call last week, but am trying to be glad that my dad is relieved of the pain and anxiety and is resting comfortably.

Hospice had a nurse here for three hours, delivered the hospital bed and wheelchair and had the social worker call by 4pm! I was absolutely amazed at the speed and grace of all involved.

Thank you for all the support.

7

(24 replies, posted in General Discussion)

I am so sorry to hear of Rick's passing. May peace be with you and yours.

8

(11 replies, posted in General Discussion)

Thank you to all! Hospice starts tomorrow. My dad fell, for the first time, this AM and I knew that I cannot do it alone anymore. He is hallucinating more and more and in pain and is on the verge of not being able to bathe himself. He barely made it out of the shower today. Luckily, he just gashed his elbow and back in the fall, nothing broken.

I already feel better for making the decision to go forth.

Kim,

I am so sorry. My dad, too, has been fighting Cc for 13 months and is getting worse. We are meeting with hospice next week. I moved from Denver to take care of him last year and barely see my five year old daughter. I am so tired and worn down I cannot put it into words. I am sorry so many of us feel this way, but I am grateful for the year we got with my dad, that we would not have gotten without all this.

10

(11 replies, posted in General Discussion)

Hi all...sorry I have been missing for a while. My dad had a good period from Mid-Feb to Mid-March and things have really gone downhill since then. He just got out of the hospital last night, after have an external and internal drain put in because his bilirubin is so high. They have gotten it down to the mid to high 4's, but it does not look to be moving from there. He is also very weak and having some hallucianations throughout the day and night.

We are meeting with hospice next week, as he is taking 15mg of Oxy every four hours and it is covering 90% of the pain, but a month ago we were at 10mg, every 4-6 hours and not all the time.

Is there a list of questions to ask? What do I expect?

As sad as it makes me, it is almost a relief that I am going to get some help.
The nights are so hard with Phil up and down all night.

TIA!

Stacey

11

(13 replies, posted in General Discussion)

Alison,

I think the hardest thing for me, caretaker to my dad (62) is you have no idea what to expect.

My dad is 11+ months into this battle and it has been a BATTLE. 12 hospitalizations from 4 to 44 days in length (the Whipple and recovery was the 44 day one), several blood infections, all kinds of open wounds and tubes and fevers and we begged for chemo and sought out a second oncologist to get it and it has been the battle extraordinare!!

I don't know where we stand but I do know we have made it 10 months longer than we would have without this fight. I have,basically, moved back to St. Louis to care for him 24/7. My dad was luckily retired for several years before this, so he has never had to deal with that aspect. It has been overwhelming...all that said, we would do it all over again. He has gotten to see my daughter blossom from 4 to 5 and my sister had a baby a week after my dad had his first (and three more) surgeries.

You just have to take what comes to you day by day and work from there. We have laughed and cried at some of our circumstances, but it has been joyous to have the time.

Hang in there, read everything you can, ask questions and try to live each day with a little more joy.

Stacey

12

(8 replies, posted in General Discussion)

My dad has a constant runny and/or stuffy nose. It seems worse with chemo, but now he has had three weeks off and still has the symptoms. He also sneezes more than normal.

13

(4 replies, posted in Chemotherapy)

Susan,

I have asked every time, but my dad has been turned down for every trial we have tried. He had colon cancer in 2009 and has UC and PSC, so he seems to be excluded. I will ask again tomorrow.

14

(4 replies, posted in Chemotherapy)

Lainy,

Thank you. We have an appointment Tuesday to speak in person and also look at new labs. Given my dad has had a couple cholangitis flair ups and three blood infections prior to chemo and post Whipple, they likely would have happened anyway, but he has been really sick with chemo side effects. He is almost three weeks post chemo tx and he still needs zofran every eight hours to be able to eat. The IV antibiotics and blood have really pepped him up but those have to come to an end eventually...

My dad is almost to one year from diagnosis. He has done five rounds of chemo (Gemzar only) and the last three were only 75%...He has been hospitalized two of the last seven weeks and has had a bad, bad case of cholangitis and a blood infection, along with all the side effects of chemo. He was slated to add Cis, but it was deemed too risky. He is on home IV antibiotics and the PA has given us the heads up his oncologist is not keen to go forth. We sought out this oncologist, as his last one was not willing to try, for fear of killing him. He also is not able to do radiation.

My dad wants quality of life first and foremost. His tumor markers and liver function have not improved at all and he spent January in bed or the hospital every single day.

What do we do from here? He is not eligible for any clinical trials, He takes supplements, eats as best he can...

I feel helpless and we have had A+ care throughout the journey....

Stacey

Beth,

My heart goes out to you. I am so sorry Dave has taken a turn. My dad is a Barnes (Linehan, Tan, Chapman) patient  and I have followed your story and, I am sure, passed you in the halls of Barnes last year. I hope you and Dave can savor the days and moments yet to come.

Stacey

Fern,

As seems the case with so many, my dad has had the CA-19-9 marker jump all over the place. Infection seems to skew it.

I have to tell you, the oncologists attitude seems disturbing to me. My dad has been incredibly sick the last eleven months and not once has anyone told him he is "terminal" nor have they ever blown our concerns off. He has been admitted 12 times in less than a year and we did the ER route once and every time since then, we call, report symptoms and get a direct admit to a room. Most of the time it is 2am and it has been an uncanny number of times on a Saturday or Sunday, without any issue.

Can you get a new oncologist? I would seriously consider switching doctors if you do not get answers.

Stacey

18

(17 replies, posted in General Discussion)

Phil is home and very happy that he can chill here. All the supplies arrived and we are set for the weekend. His mood is already very improved!!!

19

(17 replies, posted in General Discussion)

Procedure cancelled. This hospital stay has been "wait five minutes, something will change". They decided the ERCP is just too risky and the antibiotics seem to have gotten rid of the blockage. They were unsure they were going to be able to get a stent in, so I guess it is better this way. They did warn us, as all of us know, that we may be back next week for the same problem, but we will take this today. They are putting in a PICC line and tomorrow he will go home on IV antibiotics for the forseeable future. Thanks for all the prayers and thoughts. They mean so much!

20

(17 replies, posted in General Discussion)

Thanks Marion!
We are hopeful too.

Melanie-

I am so sorry that this has impacted your family like it has. My dad had already retired when he got sick, so we are very lucky that it was not a financial impact, but it is hard no matter what. I hope you can find a way to make everything work for your family and bring peace.

Stacey

22

(17 replies, posted in General Discussion)

The much dreaded "stent ERCP" is being performed tomorrow. We had to sign off on anything they will need to do. Nine hours ago, they told us an ERCP was to risky, as with a 90% colon resection, 40% pancreas and 60% liver resection, my dad's placement of organs is one in six billion. They plan to try their damndest to make it work.

23

(6 replies, posted in General Discussion)

My dad has CC and we did seek multiple opinions, but it never delayed tx.  guess if surgery is the option you are facing and want a second opinion, then you need to wait, but I would jump at chemo or radiation if someone is willing to do it.

Stacey

24

(9 replies, posted in Introductions!)

Val,

Welcome to this little family. It is so good to hear you had a successful resection and are doing well!!!!!! Very encouraging! Keep doing well and living life!

Stacey

25

(17 replies, posted in General Discussion)

Sorry I have been MIA. Just a little background. My dad had a Whipple in March 2010 and several complications and add'l surgerys. We started Gemzar in December and it has been a bevy of complications. He is back in the hospital this week, second time this month, but he is really in tough shape. His bilirubin is high, he has endocarditis, he had a cyst under his sternum drained yesterday and a drain left in and he has cultures growing all kinds of problems. In addition, he got some more RBC last night, but his number is still terrible (8.3 but up from 7). Because of his infection issue, he does not have a port, but needs a PICC line, but the attempt failed. I spent the first night in the hospital, but have gone home for about 12 hours the last two nights to try and recoup some sleep. What prompted me to force him to come Sunday night was a fever of 104.8 that I could not get down. Basically since we started the Gemzar, he has run some kind of fever five or six days of the week.

We have a great team of Drs. and the floor hospitalist is on top of everything, as he seems to be here a dozen times a day, but I am really worried.

Stacey