Topic: Kel's last PET wasn't good, she's not continuing tx...

KelLewis, my sister has decided not to continue treatment. I noticed she hadn't updated for a while, so I thought I'd give a summary (not near as entertaining as her writings...but I'll try my best).

Although the Gemzar seemed to work the best at keeping the cancer from spreading or at least slowing it down, she couldn't keep her platelets up while under treatment. The last time she had it they gave her 3 units of platelets and none of them stuck - in fact her count was LOWER afterwards. So the ONC said no more Gemzar. Then she did about 8 weeks of Rituxan which they used to treat her for ITP to try and get her platelets up. They actually climbed slowly up in the 40's and then later into the 50's - she's now around 57 and holding which for her is amazing.

After no chemo for 3 mos she decided to try something new but after only two treatments she decided that she just couldn't continue. Out of 14 days, she was down for the count 10 of those days. She was so wiped out, and with little memory of the days.  The latest PET Scan showed excessive cancer in the liver, in a "milky way" sort of sprayed pattern, with heavy lymph node involvement with some measuring +/- 5.3cm. There was also some in the area outside of the liver in the gutter area.

So now the goal is to try and keep her with us and comfortable for as long as possible. She has a lot of trouble sleeping, and takes Ativan to help with that. They gave her a morphine patch but it didn't help with the pain AT ALL. So she went back to the Vicodin which helps take the edge off. Most of the pain is in her upper right quadrant, front and back.

Nearly 4 years ago they gave her 6 - 12 mos...NEARLY four years ago! She has fought such a brave and strong fight. Trying everything possible to stay here just a little longer. I am so much in awe of her daily fight and struggle just to live! It's exhausting just to watch so I can't imagine how she does this EVERY day.

Our family is very close, and we support her and her decision 100% - it's her life and her choice. I took her away to Monterey this past weekend to give her a good sunshine break. We got the ONC to get her a wheelchair and as much as she hated the idea, she realized it sure made it easier to get around! Now we're back home.  She was in extreme pain yesterday and she's been sleeping for the past 24 hours..unaided by drugs. When she wakes she seems really disoriented.  I'm really worried. The ONC wouldn't really give us a "window of time" so we're clueless as to how fast or slow things will go. She was so full of life this weekend (albeit on steroids still), how could she deteriorate so fast? I'm not sure what to do, or when to call her doc or take her to ER. Any help, suggestions or educated guesses would be great! We all love her so much and just want to help make her comfortable and give her as much love and happiness for as long as we can. Geez, she's only 45! CC really sucks!

Thanks for listening...this has been such a bad ride...

KelsLilSis

Re: Kel's last PET wasn't good, she's not continuing tx...

KelslilSis,
First I want to welcome you to the site, and say Im so sorry about your sister, she is way too young to suffer with this cruel and unfair disease.  I am thinking(and this is just based on many posts I have read, and my fathers situation) Since your sister isnt even on the morphine patch, the fatigue is coming from the cancer.  I was told in my fathers case the tumor in the liver was causing toxins in the body, which was weakening him,  causing him to sleep 20 hours a day.  If I were you, I would not hesitate, and call your Onc and see if he would put in an order for Hospice.  It was the most difficult phone call I had to make, but I am grateful that I did.  They come and make the patient comfortable, and they can make it so there are hopefully no more hospital visits.  The exams can all be conducted at home. (ie heart rate, blood preasure)Most  importantly, the patient is comfortable and they offer the caretaker badly needed comfort as well.  Also, they know what signs to look for as  our loved ones begin to slip away from us.  This must be so sad for you and your family, and I hope you can find some peace in what a wonderful sister you are, and how important you are to your big sis.  I hope your trip to Monterey is something you can hold close to your heart in days, weeks, years to come.
You, your sister, and your family are in my prayers
Barbara

The  Lord is my shephard

Re: Kel's last PET wasn't good, she's not continuing tx...

Hey, I hope you are getting some help.  I had to take care of my 42 year old sister when she passed away in January.  Do you have hospice or family?  I am praying for you.  I know the journey you are about to take and it will be the hardest thing you will ever deal with.  But it's our job to be strong for our sisters...that's what we are here for.  Please know there are people out here praying for you.

Re: Kel's last PET wasn't good, she's not continuing tx...

KelslilSis,

Thanks for the update on your sister.  I am glad you have joined us but sorry for what you & your family are going through that has brought you here.  As you know, this horrid disease doesn't play fair. It is sneaky and unpredictable. Nothing is consistant & it treats everyone differently.  Keeping your sister comfortable & out of pain is very important now, so you are on the right track.  It is all so very hard on everyone.

Your trip to Monterey sounds like it was a nice break for both of you and something you will always remember.

My heart breaks for you. Your sister is too young and it is so unfair. As you said, it real does SUCK!!!!

Just remember that we are all here if you need us. Even just to vent your feelings.  You, your sister & your family will be in my thoughts & prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Kel's last PET wasn't good, she's not continuing tx...

Thank you all so very much for your support and advice. Kel's husband and I will be taking her to see the ONC this morning. I guess I'm just so surprised that on 3/11 the PET Scan didn' show any involvment in the brain or other organs - it's only been three weeks, can it really move this fast?  I spoke with her last night and she is a bit incoherent - unsure of what day it is, hearing things and generally confused. Whoa, this is just so scary - and not how she wanted to be. I will be talking with the doctor about hospice and I already know she's going to fight me on it. She'll say "No, its not time". And I don't blame her, but I have to do what's best for her.

The family and I, we just wish we knew how to move from here. Is it going to be fast as in days or weeks or months? None of us can afford to just take off of work or leave our jobs, but if she's going soon we want to be there with her as much as possible. I don't want to exhaust my vacation now if she's going to need me more in a few weeks. It's so hard to make the "right" decision. How do you know?

Thanks again for all of the support, it really helps to know that you folks are there and truly understand what we are going through.

With much love and hope..

Re: Kel's last PET wasn't good, she's not continuing tx...

My sister went into the hospital in December - a week before Christmas.  They sent her home "to die" within a week.  Over the next couple of weeks she quit eating and was vomiting a lot.  Then she went into the hospice house on January 15th and died on January 23rd.  I look back and that is such a short time.  Really a month from being in the hospital.  But she just quit eating and drinking all together.  They say that it takes approx. 10 to 14 days to pass if they are not eating and it took her 13 days.  Our family struggled with the same decisions...when to take off work and how long will it take.  And it really sucks to have to think that way.  But it's reality.  The day she went into hospice house I never left her side again.  I figured if my job didn't want to wait for me, I would go to work at McDonalds.  She was so much more important.  My job did wait for me...I am lucky.  And I don't have any regrets.  I knew at the time that she was so much more important than any job.  I love and miss her so much and this will be so hard for you.  I'm so sorry.

Re: Kel's last PET wasn't good, she's not continuing tx...

Everyone is different. In my husband's case it went really fast.  I stayed with him 24/7 the last week and one of our sons was also there with us the last two days. We really didn't know what to expect & had planned to take him home to hospice care, but he passed on in the hospital the morning we were planning to take him home.  From what you describe, it may very well go quickly, but no ones knows for sure. If at all possible, I think I would try to work something out with the family to have someone with her as much as possible.  Again, know that you are all in my thoughts & prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Kel's last PET wasn't good, she's not continuing tx...

This is what I was told by our Hospice Dr.  In my dads case, the tumors in his liver and pancreas are causing them to shut down and therefore releasing toxins in the body, those toxins will travel to the lungs and the brain.  That may be what is causing your sister to be "confused".  The toxins can also cause fatigue and loss of appetite.  I am sorry you are going through this and it is appearing to be a rapid deline for your sister.  The one area where this cancer is consistent, is that it isn't consistant and it isn't always predictable in its progression.  If Hospice comes, there are certain signs they look for and can predict somewhat accurately a time span.  ie heartrate, blood pressure, breathing, circulation(a blue hue to fingernails) but again, every person with CC is different.   
BTW, this is just a thought and just how our family has chosen to handle hospice- we told my dad that we were having a nurse from the hospital examine him at home so he didnt have to travel to the hospital.  We have never said "hospice" and neither has the nurses or doctors.  We prefer him not knowing everything.   We feel it wont change the end result, and if anything, it might make his last days. weeks, months? less sad.  Again, this is an approach that is working for us.
Sorry for all your sisters and families heartache.
You are in my prayers
Barbara

The  Lord is my shephard

9 (edited by tiapatty Tue, 31 Mar 2009 22:37:11)

Re: Kel's last PET wasn't good, she's not continuing tx...

Kel's lil sis,

I am sorry to hear this sad news, your sister is much too young and she has fought for a long time. But I also know how hard this cancer is to fight and that at some point the other option seems more inviting--no pain, no tests, no hospitals.

Her disorientation could be what the others say, it is known as hepatic encephalopathy, for some reason a lot of docs don't seem to explain this real well, see:

http://www.cholangiocarcinoma.org/punbb … hp?id=1661

http://www.cholangiocarcinoma.org/punbb … hp?id=1759

Your sister is lucky to have you and a supportive family. I have 6 siblings and basically what we did was create a schedule for caring for my mom. I moved into her house and was her primary caregiver for the last 5 months she was with us. My younger brother also moved back into her house so he and I were pretty much the night shift and I would do mornings as well and then my other siblings would cover the afternoons and evenings.

I also took vacation time but like you was concerned about her needing me more later but my employer was very understanding and let me take some sick time as well. I had inquired about the Family & Medical Leave Act but it never got to that point.

The last month we hired some outside help, my mom actually asked us to call the caregiver she had hired to help care for my grandmother. Typically someone was there even though the caregiver was there but it was good to have her because it freed us to spend some quality time with my mom. She also helped with keeping the house together and just keeping us organized.

Having a lot of people is helpful but it can also be confusing, we made a care sheet to keep track of meds, meals, etc., if you want I can e-mail it to you but there is also a good book on how to organize a group of people to care for someone:

Share the care: how to organize a group to care for someone who is seriously ill, by Cappy Capossela.

I am glad you got to spend a few sunny days with your sister, as my Mom would have said, you'll always have Monterey!

Patty

Re: Kel's last PET wasn't good, she's not continuing tx...

Hi there  Is she ok to get to get in to the doctors rooms or should you have someone come to the house? good luck anyhow
                                                                              Janet

Re: Kel's last PET wasn't good, she's not continuing tx...

Hello There,
   I just want to add my "two cents". By the time We got Hospice , I was so happy to have their assist. I told my husband that I just needed some help, and we could let them go when he got stronger! It was by far the better decision, and they were wonderful to him. They will help you in any way they can. As for working, I was lucky enough to have taken a long LOA (turned into 7 months) to stay home with him until the end. It is such a worry - balancing work with the care and love for our loved ones. It was such a blessing for me that when I returned to work, I was down to one week of paid time left ( 31 years there gave me a lot of time!) , so I was wondering what I was going to do when I ran out of paid time. It is just another thing to worry about when you have so many already, isn't it?
  Anyway, my thoughts and prayers are with you, your sister, and your family. This has been such a long battle for your sister. Your CC family wiill be here for all of you if you need us.


Joyce C.

Re: Kel's last PET wasn't good, she's not continuing tx...

Hospice is awesome.  You can take a break when you need to and they are there.  And they can medicate more when they need it.  My sister had a pump but they always had more if we needed it.  She got very disoriented at the end too before she went into her coma.  And they were sure it had gone to her brain.  But that only lasted a day or two before she "went to sleep" as we said.  But she would wake up once or twice a day before she passed.  Like I said that lasted 13 days in hospice.  Everyone is so different.  She never got the signs they told us to look for either.  Her urine was still flowing, her heart was strong and steady and her blood pressure was awesome clear up until that morning she passed.  Good luck to you.  We are here for you.

Re: Kel's last PET wasn't good, she's not continuing tx...

There is something called "family leave" that your company is obligated by federal and California State law to enable you to take off to care for a family member.  Called FMLA.  Company would probably make you use up all your vacation time first, then they have to hold your job for you (even though you are no longer paid, at least you'll have a job to go back to).  Just type in FMLA on website.  Hope this helps.  BTW, my mother was sleeping a lot and confused when awake.  Didn't remember asking simple questions "what time is it" that she asked just seconds earlier.  There is no dementia nor alzheimer in our family.  Oncologist called it "chemo brain".  Gastro-enterologist suggested it was the bile duct being blocked and now the bile backing up and towards the brain.  Was advised mother would get more confused, then lapse into a coma and then "sleep away" which is exactly what happened.

Marjo

Re: Kel's last PET wasn't good, she's not continuing tx...

Got this from website for you:

"Eligible employees may take a maximum of 12 weeks of protected, unpaid medical or family leave per year. The leave may be continuous or intermittent (i.e. brief leave time taken every so often, if medically necessary). The law stipulates that the employer must return the employee to his or her position, or to a position that is equivalent in pay, benefits, working conditions, and seniority, at the end of the leave.

Restrictions

Several important restrictions limit the coverage of employees under the FMLA. In order to qualify for a protected family or medical leave,

Your employer must have 50 or more employees within a 75 mile radius of your job site (including part-time employees and those on leave);
You must have been employed by your company for at least twelve months; and
In those twelve months, you must have worked at least 1,250 hours for the employer. (For example, if you work at least 25 hours/week for 50 weeks)."