1

(16 replies, posted in Good News / What's Working)

Great to hear Kris!

2

(35 replies, posted in General Discussion)

Lainy,

Private message me.  My husband is in the pharma industry and knows a lot about Remicade.  I know he would be happy to talk to you.

I also learned a lot about auto-immune diseases and a plant based diet.  Remove meat and dairy from your diet and you will definitely feel the effects.

http://www.forksoverknives.com/plant-ba … e-colitis/

http://www.drmcdougall.com/stars/andrew_neuman.htm

3

(16 replies, posted in In Remembrance)

Pam,

My deepest sympathies to you and your family.  I admire your strength and especially the strength and courage Lauren possessed.  Your support to others on this site during your own battle has been amazing.

God Bless,
Lauren

4

(167 replies, posted in General Discussion)

Pam,

I have not been on this site in months.  Maybe it was because I wanted to wish everything was the way it once was.  I was absolutely devastated to hear of Lauren's passing.  My heart breaks for you and your family.  You as her caregiver, are a saint.  God bless you and your family.  May you find peace. 

Lauren

Thanks Lainy and Claire.  I hope your sister is doing ok.

Mom had surgery on March 5th.  Everything went so well they even got clean margins.  Last month she had a fever we took her to the ER and we were told it was a UTI. After a week of Cipro everything seemed great Davis returned two days after being off the  Cipro.  Her favors return and she was feeling terrible so they decided to put her on Bactrim. Her blood counts were fairly good her hemoglobin was a bit low but after taking iron it rose to 9. After no fevers she decided to go back home to Florida on April 27. Everything seemed great until two nights ago when she had fever and was so weak that she lost her bowels. In the ER they decided to do a CT scan and they found multiple abdominal abscesses where the surgical sites were.

I can't believe that my 79-year-old mother who sailed through a nine hour surgery is now in back in a hospital bed with multiple abscesses, Hemoglobin down to six and blood in her stool.  I don't know how they could've missed this and how it got so bad.  I'm really worried for her and I hope that she will be able to fight this. 

We just planned her 80th birthday party in two weeks from now my first cousin from Australia is coming in for the event.  We decided to ask people that in lieu of gifts that they donate to this organization.

Has anyone had these series of events Post surgery?  I really hope that they don't have to do surgery I wonder if she'll be able to handle it.

This is such a horrible disease.

Lauren

7

(122 replies, posted in General Discussion)

Pam,

I've been away and just read the posts.  What wonderful news!  Lauren is young and strong and will bounce back in no time.   She is so lucky to have such an amazing mom.  Wishing her a speedy recovery.

Nikki,

Great news about your dad.  Dr. Kato is a saint.  My mom was resected on march 5 and stayed in the hospital about 12 days post op.  it is a slow recovery but she is progressing.   It has now been 4 1/2 weeks.  She went to the mall with me today for the first time.  She was exhausted when we returned.  These are huge surgeries and it takes time to heal.  The staff was amazing at cumc.   Best of luck with dad.  He is lucky to have you!

9

(19 replies, posted in General Discussion)

Good luck Kris.  I added you to my prayers!

10

(10 replies, posted in Good News / What's Working)

Hi Nikki,

Mom had surgery Tuesday and was in ICU until Thursday am. She stayed in step down until this morning although they would have moved her earlier had there been a room available.  I stayed in Fort Lee, nj as it is right over the bridge and its the closest place to stay. As long as you wait for rush hour to end it takes less than 10 minutes.  Feel free to email me at laurengladstone@yahoo.com with any questions. I am from ny originally so I am familiar with the area and can recommend restaurants etc.

Considering the extent of the surgery and her age, she is doing beautifully. The care in ICU and step down is great. Every nurse is awesome.  Being in a room has its challenges since the patient to nurse ratio improves.

11

(10 replies, posted in Good News / What's Working)

Thank you all for your well wishes!

12

(10 replies, posted in Good News / What's Working)

I will be forever thankful to this board as I would have never found Dr. Kato.  He successfully removed the tumor, half the liver, gallbladder and resected the hepatic artery and portal vein AND got clean margins.  There is no doubt in my mind that you saved my mother's life.

Dr. Kato recommends post op chemo,  but I cannot discuss this with mom yet as she is only 6 days post op.  She sailed through the 9 hour surgery with one day in ICU and she will leave step down when a bed becomes available.  The care she is receiving at Columbia Presbyterian is outstanding. Dr. Kato is the most humble man I have ever met.  He s truly a gift from God.

 
I haven't been much of a contributor on this site, but I pray for all of the people  on this site suffering from this awful disease. 

Lauren

Lainy - I HATE rollercoasters!  But, yes, it is amazing how one minute things are great and bam, thing change.  I just try not to think too far in advance and stay in the present.

Thanks Randi.  I appreciate the vote of confidence.

14

(5 replies, posted in General Discussion)

Took mom to the ER for fever and abdominal pain.  SHe is on IV anti-biotics and is fever free except at midnight when her fever spikes to 101 on Friday, 100.7 on Saturday and we are praying it doesn't happen tonight.  Around 9pm, her temperature goes up to 99.  She is perfectly fine all day and from midnight to 3am, she has fever, wakes up drenched and is fever free. 

All her blood cultures are negative.  She is scheduled for a liver resection on Tuesday and I supposed to take her to NYC for pre-op testing tomorrow.

Has anyone else experienced this?

Mom was doing so well and we scheduled a liver resection with Dr. Kato on March 5.  She arrived on Wednesday to stay with me before the surgery.  On Thursday night she started having abdominal pain and around 11pm, she started to shiver.  I took her temperature and told her we are going to the ER with a 101 fever.  She was admitted with higher liver enzymes and we told them the last time this happened, Cipro worked well.  These docs are concerned for a blood infection so she is on a broader spectrum IV anti-biotic and she was doing well all day yesterday.

Her fever returned at midnight, but went back to normal this morning.  I am so afraid she won't be well enough to leave the local hospital and get up to NYC.  I am thinking of having her transferred to either where Dr.Kato is or at least to Fox CHase where she was treated for chemo since they deal with this more often.

I am so worried this will cancel her surgery and it will never happen. 

I am not sure what to do.  I was so looking forward to telling this board about the surgery especially since I would have never found Dr. Kato's name if it wasn't for this site. 


Lauren

Pam,

Congrats!  That is great news!  Even though it was what you have been praying for, it is still scary.  Thankfully Lauren is young and strong and that will definitely help her. Not to mention she has a great name!  She is very luck y to have such a wonderful and supportive mom. 

Best,
Lauren

My deepest sympathies.  May his memory be forever a blessing.

Lauren

Thank you all for your encouragement and support.  I don't know why I am so scared.  Mom is 79, always so strong, but has aged since diagnosis.  I know it will be a good thing, but the unknown is always so scary. Just wish we all could just click our heels and make this ugly disease go away.

Congrats Kris!  That is AWESOME news!

After 8 rounds of chemo and 40 lost pounds, mom needed a break.  Her scans showed minimal improvement, though her bilirubin return to normal and she is eating well.  A month later she gained 6 lbs and moved back home! 

She had a small setback as she blacked out and hit her head on the stone floor.  After five days in the hospital, they found a small clot in her lung.  She is on the mend and getting stronger each day.

MSKCC and Fox Chase said no to surgery, but I sent the records to Dr. Kato and forgot about it since it was way before the holidays.  Received a call today saying Dr. Kato says her can resect!

I'm a little nervous as mom started radiation this week and since 2 surgeons said no, Dr. Kato said yes.  I am nervous to have her go for the operation, but what choice do we have since she wants to live!

Thanks to this site as I would have never known to contact Dr. Kato!

Lauren

21

(13 replies, posted in General Discussion)

Deanne,

So sorry for your loss.  My deepest sympathies.

Lauren

Fingers crossed Kris!

23

(11 replies, posted in General Discussion)

Susan,

My mom (79) also suffers from gas.  It really worsened during chemo treatments.  Her doctor prescribed bentyl and that really helps her when she has an attack.  She also drinks ginger tea or chamomille which helps her as well.  She tries to stay away from foods that bring on more gas as well.

Lauren

24

(4 replies, posted in Chemotherapy)

Thanks for the replies.  It makes me feel good to hear that eight cycles is a lot!  Her platlets are getting low, but still high enough to receive treatment.  She definitely is tired and weakened from the treatment.  I think that's when we need to re-visit the benefits versus the risks of chemo.

Hoping for good news next Friday...

25

(4 replies, posted in Chemotherapy)

Mom has been on Oxiliplatin and F5u for 8 cycles. For a woman of 79, the onc says we should be thrilled.  They want to do a scan next week and decide what to do next.  The effects of the chemo are setting in and the onc feels its time to stop the Oxiliplatin.   

What is the average number of cycles most people stay on Oxiliplatin?

Thanks,
Lauren