Re: First post

Alla....it is great to hear that the pain has been reduced significantly.  I hope for both of you to get some rest now.
Alla, we have had numerous postings on bowel obstructions.  I am enclosing a link for you: 
http://www.cholangiocarcinoma.org/punbb … 233#p66233

Fingers are crossed for things to move in the right direction now.  I am thinking of you and am sending tons of good wishes your way.
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: First post

Thank you all for the support! I'm relieved that they found the reason for the pain and hopefully be able to fix it soon. He is exhausted from all this pain and vomiting. Lost more weight in those few days. Hopefully we both be able to get some sleep tonight.
Marion, the link above keeps taking me to the first page of my own post...
Thanks again, Alla

Re: First post

Sorry, Alla....try this one:
http://www.cholangiocarcinoma.org/punbb … hp?id=2658
Hope you can get some rest.
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: First post

Thank you, Marion. Husband is more or less comfortable in the hospital - as much as you can with the tube in the nose and throat... Has nausea, even with anti-nausea meds. Pain pump helps to keep the pain level at about 2. His oncologyst was off this weekend, so no definite plans on what next yet. According to the nurse, the options are limited to mesh stent, if the gastro-doctor is brave enough to try it, or do something like a colostomy bag. Surgery to remove the tumor that caused blockage is not on the table. Found out (also from nurse) that liver tumor had increased to 6 sm and bunch of other tumors in the stomach area, and they started talking about hospice. What worries me, that with hospice the option of TPN is not available, but since he wasn't eating for a while already, wouldn't it speed up the process? His weight yesterday was about 107, fully dressed and without food yesterday I'm sure it's even less now. The nurse was guessing that he might have couple of months. Of course, I'm jumping to conclusions, before actually talking to a doctor. My hubby didn't even tell me that they were talking about hospice - his nurse told me. Luckily he got our favorite nurse today, that we've known since the beginning of this journey and she is wonderful. I guess I was still hoping for better news and outcome (more time), but reality sinks in and I can't stop crying. Dreading that we'd need to have a talk with the kids - 15 y old and almost 6 y old, as well as talk with each other to discuss all arrangements. Not ready for it at all! Thanks for listening!
Sincerely, Alla

Re: First post

Alla….As mentioned before my husband also was on TPN - I believe that it extended his life by several weeks to a few months.  I recall asking a physician:  as the cancer is progressing, are we feeding the cancer with TPN?   The response:  you might be feeding the cancer however; at present it is keeping your husband viable.
Since I have learned that the cancer will take the nutrition needed and unless progression of disease can be halted or slowed, it will deprive the patient of the valuable resource.  In other words, regardless of TPN when the cancer does not respond to treatment, it will continue to spread. 
The overriding issue is pain control and that has been achieved so far.  The ongoing nausea is difficult to control and as you witness in your husband’s case, medication is not helping much, if at all.  This had been the case for my husband also.  For him the non-response to anti- nausea medication was indicative of progressive disease. 
Alla, the fact that your husband’s pain has been controlled is a major achievement.  Hopefully tomorrow will shed some light on the next steps to be taken by the physicians. 

In regards to speaking with the children, is it possible to involve a social worker or counselor? 
Alla, know that you are experiencing a situation none of us are prepared for, tears come with the territory.  You have exhibited enormous strength and determination and you will continue to do so.  Please keep us posted – we are in this together.
My heart is with you,
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: First post

ALLA, I am so sorry to hear about all that has been happening and the results, I have been waiting so thanks for posting. You might want to see if you took your husband to an in Hospice Facility if they could then use the TPN. Did you ask Hospice themselves, if they would do TPN at home?  Now this is my own personal opinion but if they talked Hospice, if he cannot have surgery, I always say to myself, when is enough, enough. This is an extremely sad and emotional time but trust me, once you make this big decision together and talk it out and have a plan in place it will leave the time to just concentrate on each other. Teddy used to call that 4 months with Hospice, "our honeymoon".  With all that said, we don't listen to time frames because no one really knows. I do know that by being open and talking a whole lot, it helped us both, it worked for us. Children are much stronger than we think they are and you will all lean on each other. Like you say you want to hear what the Doc says first. IF you have to have your talks, the first sentences will be hard but then your way will be eased. Bottom line is comfort for hubby and for you to be very, very strong now. I am here and please feel free to email me should you want to talk more about what to expect. I am right along the side of you. By the way calling Hospice does not mean the end but they can be very helpful thereby giving you the time to concentrate on each other. My heart breaks for your family. BE VERY, VERY strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Hi there,
             you and your husband are in the position where you must talk to your kids now,he really needs to tell them what he needs to,this will make everyone feel better and sustain them a bit.
  He is gravely ill and I think TPN is not apropriate ,hospice will be a great support to you at this time,whether at home or in the facility.
  It is all such a shock isnt it but a bit of extra adrenalin carries us along at this time and helps us through,

                      wishing you strength   Janet

Re: First post

I really hate to hear all of this. My prayers are going out to you and your family. You are not too far from me and I went through a similar situation 2 years ago with my husband. Thankfully we caught his in time. If you ever need someone to talk with just call 540-616-6960. I have been in your shoes with little children too. We live in Pulaski. I will help you through as much as I can or just listen if need be.

Kristi

Re: First post

Hello!  I was diagnosed with cholangiocarcinoma at the end of August.  First I had a radiologic embolization of the largest tumor, which is in the left lobe of my liver.  September 21st I began chemo, cisplatin & Gemzar.  This is my first post, although I've read some of the others posted.  Have many questions, but feel very disorganized.  Wondering how many people have had an IV port inserted for the blood draws and the chemo treatments.  Are there problems with it?  Is it difficult to keep up?  Does it effect your sleep?  I sleep on my stomach.  Also having trouble with no appetite, fogginess, headaches and some insomnia.

Re: First post

Dear Kaklon, welcome to our extroadinary family but sorry you had to find us.  My husband never had chemo but did have a port for blood draws as he had an ecoli infection. They put it high up on his back near the shoulder. Never had a problem with it. Not sure where they put it for chemo. The no appetite, fogginess, insomnia need to be discussed with your ONC as there are RX he can give you. May I ask where you are being treated? Try to read up as much as you can as knowledge is our most valuable tool. We are also believers in 2nd and 3rd opinions. Please keep up posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Kaklon...welcome to our site. We have numerous discussions on in regards to ports.  You can read up on some threads by clicking on the below link:
http://www.cholangiocarcinoma.org/punbb … hp?id=7796
I don't recall anyone discussing the issue of sleeping on the tummy, but am hoping for others to chime in and help you out.   
I think that the most valuable testimony comes from those with first- hand experience; you will find plenty of that on our site. Make sure though and discuss everything with you physician.
Kaklon, it is understandable that you are confused. The diagnoses of this cancer in addition to the embolization and the treatment with chemotherapy are difficult to comprehend.  Hang in there; you too will adapt.
But you must have nutrition. In order to raise your caloric count it might help to introduce nutritional shakes or, if possible, enlist a nutritionist . Are you drinking tons of liquids?  Another "must," as it will help flush the chemotherapy through your system!  My husband loved the various flavors of Gatorade.
Kaklon, please continue to reach out to the great people on this site.  We are in this together.
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: First post

Thank you all for your support. We are still waiting to find out what is next. Surgery is definitely out. Oncologist is coming back only tomorrow morning, but "might" call me tonight according to the nurse. So nothing is being done, other than continue TPN and NG tube. Getting confusing information from different people - husband said that oncologist wasn't talking about hospice with him at all, so why nurses asked us about it? Case manager from hospital asked me today if we are planning on him being discharged home. She checked doctors notes for me and said there was a note about him having feeding tube. Even more confused - if they can't do surgery, how would they do feeding tube? If he goes to hospice - they don't do feeding tube. Plus
if his bowels not working, where would the food go? Mixed messages... Hope doctor will call me and explain!
Lainy, wanted to ask you, when you were on your "second honeymoon", was your husband able to eat ok? Did he have good days? What was his cancer marker when he started hospice?
Thank you all!

Re: First post

ALLA, I just e mailed you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Thank you, Lainy, for your email - appreciate the information.
Marion - since your husband was on TPN, did you use hospice at all? If yes, did they allow use of TPN? By the way, my husband' first name is Marion (family name), but he goes by Marty...
Still haven't heard from the doctor, but the nurse said that doctor had wrote in the notes that he advices discharge home with hospice. My husband's reaction to it was - "Doc had given up on me". I was at loss for words...
Currently they disconnected the NG tube, while still leaving it in the nose/throat, to see if his bowel would start working. My understanding, that they will slow start introducing clear liquids to see if he can produce stool (sorry for details...).
Since I haven't talked to a doctor and don't know any details of the scan and what is his reasoning is, I only can say this for sure - I can't agree for sending him home with hospice, if there is no TPN and his bowels are not working. In my mind it's sending him home to starve to death. Am I overreacting?
Just want to hear some opinions... Thanks again, Alla

Re: First post

Dear Alla, the mother bear in me is coming out now and I am a little upset to say the least at how the ONC and Nurses handled this. The talk of Hospice should have come from your ONC! He should have come in the room, sat down and explained everything to you both. This was unacceptable as far as I am concerned as he needed to explain why he is saying what he is. When is the ONC supposed to come see Marty? I don't know if it will do any good but I would let them know you cannot take Marty home until you have both talked with the ONC!  If necessary talk to a Social Worker at the hospital. Above all, be very strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Alla... My husband refused to have Hospice involved in his care.  He wanted to live and to him Hospice represented the opposite.  It was not until the very last afternoon of his life when I was unable to control his vomiting that I called in Hospice.  Yes, Alla, the TPN pump was replaced with a morphine pump; the same line was used.  I promised him to replace the  morphine with the TPN pump in the morning, but never had the chance to do so. 
Alla, you do not have to take Marty (Marion) home. At this point you are unable to care for him.  I know how tough this situation is, but let's see what tomorrow brings.
Hopefully Marty is able to handle the liquids and possibly is able to digest solids also. It truly is one step at a time. 
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: First post

Well, talked to the doctor this morning. He recommends hospice with pain management only. He says he'll probably have 1-2 weeks without nutrition. I asked about TPN - he said it will add few more weeks, but most likely will have vomiting daily. He said he himself would have chosen hospice to reduce suffering. I didn't talk to my husband yet - what he'd want. I still think TPN would be the way to go and if it gets to unbearable point, then go with hospice.
Marion, how long did it take for your husband from the point they offered hospice (and he refused) till passing?
About the whole handling the situation - in nurses defense, I was pressing for information and they told me what was in doctor's notes. And since I'm working full time, I wasn't able to be there when doctor was. But he called me this morning and explained most of it. Of course now I have more questions...

Re: First post

Alla….I have responded to you in the Supportive, Palliative & Hospice Care of our site.

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: First post

Thanks! I posted latest update under the same section...

Re: First post

Lainy and Marion,
Thank you for your kind responses.  I had the radiological embolization at Northwestern Memorial Hospital in Chicago.  My chemo is at Siteman Cancer Center, Gem/cisplatin. I'm scheduled to do another round (Day 1, 8, & 21) and then have another MRI to see how the tumors look and what should be done next.
Although I keep trying to do the fluids (use to drink water all day by the bottle), my stomach objects.  Can only eat small amounts at a time, so I try to make it all healthy, continue to take my daily vitamins as I have done for the past 30 years, and make foods that I love in order to rouse my appetite.
We did get a second opinion at Northwestern Mem Hospital and they coordinated efforts with Siteman so that I had the embolization before the chemo.  Also, had an endoscopic biopsy of the lymph node nearest the liver the day before chemo began.  The samples were sent to Caris Lab in Texas for genetic profiling for possible nuclear medicine.
Does the chemo effect the heart?  My heart palpatations go on all the time.  Magnesium once a day use to take care of it for me.
Slightly depressed,
Karen

Re: First post

Dear Karen, thanks for your update and it looks like you are doing all the right things and are getting good care. Who would not feel a little depressed with all you are going through and you might want to ask your ONC for something to get you over the bumps or I should say mountains! Instead of full meals may I suggest grazing during the day? Quite a few of our CC patients have found grazing easier than meals. I know there is nothing tastier than homemade chicken or vegetable soup that you can grab of bowl of a few times a day. I used to give my Teddy Carnation Instant Breakfast, vanilla, blended with a banana and that has a load of nutrients and can take the place of a meal. I would ask your doctor if the chemo can give heart palpatations. Hoping for everything to start turning around for you, but please keep us posted, we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Karen.... Please know that both, depression and heart palpitations are considered  side effects of Gemzar. Definitively, let your physician know.

http://www.sideeffective.com/drugdrug/g … pitations/

Karen, know that you are not alone -we had numerous discussions on depression and I am sure for others to come around and share their thoughts with you.

Hang in there.  We are rooting for you.
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