Topic: My Sister

I have been discussing my sister lately.  She is Stage IV Bile Duct Cancer.  Her Gemzar and Xeloda were working but after about 7 months it stopped.  They have now started her on Taxol and some other long word.  She had one treatment 3 weeks ago and has lost her hair and about 30 pounds.  Not eating, drinking, horrible headaches.  And now one side of her face is drooping.  She has another appt. tomorrow to get this chemo again.  I am praying that they decide not to do it. 

Has anyone ever heard of the face drooping side affect?  This scares me really bad.  Oh and so much pain.  She is going downhill so fast and I don't know if it's the chemo or the cancer.  She said her pain has increased ALOT.

Re: My Sister

Tanoland...... That othe drug is probally a platinum base drug which can be extremely harsh(oxyplatinum, carboplatinum).  Hair loss and drop in eating I can under stand but thirty pounds in three weeks and terribles headaches is a bit to much.  How is her blood work ?  She is the patient and can say no anytime she wants and try some other combination.  Drupping of the face don't sound good. Has she had any pains or other symtoms,like talking with a slurred speech.  I would think twice if I were her and maybe just take a break for acouple months.  I have never herard of the drupping face .  I would consider that a severe side effect in my opinion.  Sounds like the same symtoms of a possible stroke and might have her checked out as soon as possible at an ER.  I'm so sorry to hear this going on.
God Bless her and I pray for a quick turn around.
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: My Sister

Tanoland,

It could be either one. The treatment or  the cancer. My husband never had chemo. They considered it but said that sometimes it can be worse than the cancer. He was also very weak & had lost a lot of weight by that time so they did not recommend treatment.   As Jeff stated, she is the patient & can decide to continue or quit the treatments  at any time. It is her body & her choice. I also have not heard of the drooping face & wonder if she possilby has had a stroke.  That is also something she should probably have checked out.  I am so sorry that all of this is happening. Wishing the best for you and your family. You will be in my thoughts & prayers.

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: My Sister

Tanoland....Jeff is our guru and I always listen to his talk.  I have heard of drooping faces before and would definitely have a talk with the physician about this.  Certainly, I would (as Jeff has pointed out) have bloodwork done and possibly, some scans, also.  You would want to rule out the cancer causing this condition (drooping) or the that the chemotherapy is the culprit.  What type of pain medication has been prescribed for her?  You would want to insist for her pain to be brought under control. 
Hugs to you and your sister,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Sister

She is on so much pain medication.  Not morphine yet, but just below that.  We see the doctor tomorrow and I hope the bloodwork shows something and they can figure it out.   I will definitely update everyone tomorrow.  I'm scared.

Re: My Sister

Tanoland,

I know how frightening all of this is.  It seems like things just keep happening & changing & you can't seem to get any real answers. It is scary.  You feel so totally out of control, & unfortunately you are. The one thing you can do is insist that her pain be keep under control.  There is no reason for her to be in such pain on top of everything else. Hopefully tomorrow you will get some answers.  Just try to stay strong & think positive thoughts. As Lainy says, it is all about ATTITUDE! Once again, know that you & your sister are in my thoughts & prayers. I will look forward to hearing how things went tomorrow & hope that it will be good news.

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: My Sister

tanoland....,you might want to discuss the pain medication with her physician as it appears as though your sister may need something for break-through pain.  Our JeffG has posted frequently about his pain control.  You might want to use the"Search Function" by entering "break through pain" and see what pops up.  Others may also want to share some of their knowledge with you.  And, please remember, you are not alone in this as we all care and are there for you.  Good luck tomorrow.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Sister

She does have some breakthrough medication.  I think she is medicated all the time. 

And even though I don't post often, I read the support you guys give one another and I can feel it.  I definitely draw from that.  I read every day all day on this website just looking at what is working for other people.  Just a wonderful group of people.

Re: My Sister

Just another thought on the subject.....There is also a benign condition called Bell's Palsy.  I woke up one morning and wondered if I had had a stroke.  It's a condition that will rectify itself.  Here's a link for more information:

http://www.bellspalsy.ws/

Just a thought...........

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My Sister

My sister was in the hospital for a week and a half.  She became the typical bile duct patient and had to get 2 stents in.  She was so sick.  They have now sent her home with hospice.  I wonder how long she will last.  I have never been around somebody dying before.  Her pain gets so much worse every single day.  They said she has too many tumors on her liver to even count.

I am so sad.

Re: My Sister

Tanoland,

I am so sorry to hear the sad news about your sister. From what you have said, I would suggest that the most important thing for your sister right now is to keep her as pain free as possible. These situations are never easy to handle, but with CC it just seems so much worse. I know exactly what you are going through as I was there myself not long ago & am still trying to deal with it all. Remember that you can come here whenever you want for help & support or even just to vent your feelings.

Know that you and your family will be in my thoughts & prayers.

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: My Sister

She hate the pain pump and almost refuses to use it until she can barely stand it.  She thinks it makes her nauseous even though the doctors told her it's the tumors on her liver and the stents that are making her nauseous.  So I guess she will push that button when she needs to.  But she is stubborn. 

I just worry about her kids watching her go through this.  She has a 13 and a 15 year old.  She vomits a lot and I know that is hard for them.  Her spirits are up though and I pray we have a good Christmas. 

You all are very inspirational to read.

Re: My Sister

Have they given her anything for the nausea? You may want to suggest it. Also, there are other things they can do for pain. Possibly a patch or intraveniously. My husband never wanted to be on too much pain medication either, but they explained to him that there is nothing wrong with useing it when needed. This disease is bad enough without having to be in a lot of pain too!    As for her children, all you can do is be there to support them when they need you. CC is a horrific disease & it is hard on everyone involved. The patient, caretakers & family. It is good that she is in good spirits. I will be hoping that you can all have a nice Christmas despite this awful disease. Take care & tell the kids to take care of themselves too so that you can all be strong for your sister, their Mother.

Cyber Hugs To All Of You,
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: My Sister

Tanoland.... I am so sorry to hear about your sister's condition.   As Darla mentioned, keeping her comfortable and pain free and anxiety free, with lots of love is the way to be going.  The nausea probally is caused by the pain meds she is taking and hospice can prescribe medication to stop the vomiting.  The whole idea of pain meds is to take as directed not when the is pain. you have to maintain a certain level at all times or it will be a waste of time taking the pains.  I am on 180 mgs of morphine a day slow release and have breakthrough meds quick release to take up to ten mgs.  I now have liquidfied morphine for instant relief as my ribs fracture.  I have been nausea a few times and took meds for that. I can't express enough to keep taking meds as directed not as needed.  Tanoland my heart is with you and your sister.  I hope Hospice are doing all they can.  The at home hospice I have are excellent.  One thing they did say to me more than once is not to worry about taking to much pain meds.  There are so many ways to stop the pain or reduce to a 1-2 level.  I only had to use the liquid morphine 3 times , each time was when a rib fractured.  Get something if not already for anxiety as well as that can cause nausea as also.   May prayers and thoughs are with you all.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My Sister

Tanoland

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Sister

Tanoland,

I am so sorry to hear this sad news about your sister, I hope she gets some relief from her symptoms and is able to have some kind of Christmas with all her family around her.

Does the hospice offer some counseling services for the kids? If not, their school may be able to offer some. It is hard to lose a parent at any age and hard to watch anyone suffer but teenagers are going through so much as it is.

I am sure you are apprehensive about what lies ahead, if you have never been in this role before you might want to take a look at this:

http://www.hospicenet.org/html/caregivers.html

God bless,

Patty

Re: My Sister

She does have drops to put under her tongue for the nausea.  And they did tell her before she left the hospital that it was the cancer causing her nausea, not her pain medication.  But after visiting with her last night, she is pushing the pain pump button every 3 minutes on the dot.  So I know her pain is increasing...and so fast.  She seems to be deteriorating very quickly. 

Her kids are getting some counseling.  And we have a large family and their dad to help support them.  We are just trying to make it a happy Christmas. 

The scariest part for me is that I have never seen anyone go through this before.  And she is my very best friend.  Has been for 40 years.  I don't want to see her suffer and I just wonder how long this will last.  How bad her pain will get.  She's not eating a whole lot and has a lot of bowel problems.  The whole thing sucks.