26 (edited by marions Sat, 14 Mar 2009 10:08:42)

Re: Strange Question

Kristin....This is what I have been told by several surgical oncologists:
Depending on the vascular invasion by the cancer the liver will re-generate accordingly.  If no major vessels and arteries have been affected then yes, both lobes can grow back to its original size.   If however, veins and arteries have been affected then the remaining lobe of the liver will take over the entire function.  It was pointed out that the volume of the liver is determined by the size of the patient (small people have small volume, large people large volume)
Hugs to all,
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: Strange Question

Having a high incidence of cc in our family we are able to compare the various experiences and see what worked and what was of little value. Some of you seem to have responded well to treatment. Our experience leads us to think that a hands off/minimal intervention by the medical profession is the way to go for us. Major operations (in our family) have proved useless and aided the spread of cancerous cells around the body. The patient was then not just fighting the disease but they had the op to get over as well and the horror of many other cancer sites in their body. This diminishes quality of life considerably.

One intervention that did improve symptoms was the insertion of a stent to aid the flow of bile.

So what I am saying is yes cancer kills but sometimes it is aided and abetted by meddling practitioners.

Re: Strange Question

speckledhen.....Sometimes, one feels for doing something is better then not doing anything at all although, we don't really know until afterward or, in many instances, we truly never know about the validity of our actions.  At least, that is what my husband was struggling with.  I gathered the information and supported his choices.   Based on what you are saying, the decisions you are making seem so right for you.  I wish for you brother to be feeling better anyway possible.
Hugs
Marion

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Re: Strange Question

Dear Speckled:
I agree with you wholeheartedly -- I think more and more than the quest by doctors to do "something" may do some CC patients more harm than good.  Having been through this as we all have, I fully understand the powerlessness and understand, too, that doctors can HARDLY STAND when the patient chooses to do nothing at all, because this goes against everything the doctor "knows." But with CC, I am not sure the docs know a whole lot more than those of us who are afflicted.

Re: Strange Question

This discussion has taken an interesting turn and I have contemplated whether some of these procedures do more harm than good myself.  For sure the stent placement is absolutely necessary when there is a complete physical obstruction.

I wonder about a lot of the drugs that get ofered.  I've been offered narcotics to use as needed for pain, anti-nausea medicine, stool softeners, anti-itching meds, anti-anxiety meds, antibiotics, blood thinners and more already.  If my liver is congested from the obstruction how can I process all these drugs properly? 

I worry when I am in the MRI machine that the frequencies excite and stimulate the cancer cells.....

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

31 (edited by lackney Fri, 27 Mar 2009 10:06:31)

Re: Strange Question

I've got my own issues with how I've been handled, but at least throughout the process at UW-Health here in Madison, the docs have all admitted, after I've probed and probed them for answers (and checked their answers with their colleagues) that they simply don't know. I have successfully reached the edge of their knowledge with almost every meeting.

With that said, it is clear to me, after a liver resection, and two processes for obtaining a live donor liver transplantation (failed)  (UW and NW Memorial in Chicago) that I'm probably better off not taking chemo, not having that transplant anyway (immunosuppression = easy for cancer to grow uncontrollably), and focus on quality of life and getting the darn bile out of my body as quickly as possible.

We'll see what I think when (not if) the pains get worse, but for now, I think the hands off approach that I've experienced by proxy, has been the best for my quality of life.

Re: Strange Question

For most of us, at one time or another, the issue of chemotherapy comes under debate, and so it should given the disease progression, and subsequent, possible need for intervention. 
While battling this cancer with my husband it was the oncologists, surgeons, and other attending physicians who consistently agreed/disagreed with the approach of the other,  each presenting a logical argument based on their personal experience with CC and the clinical data available.  We took in account their opinions, compared it with our findings, discussed it within the family, and ultimately allowed my husband to choose the direction of his treatment.  Unfortunately, not in all instances is the patient able or, capable of doing so thereby placing us caretakers in the position of making a decision on their behalf.  It is a tough spot to be in as we want to do the absolute best for the people we love and yet, if ultimately our decision does not reward us with the desired results we are left with self doubt and possible blame resulting in feeling as having failed the ones we love so much.   
I have learned and come to grips with the fact that although, my husband choose to continue to demand chemotherapy in spite of the apparent negative response  that it was his way of exulting some control over his illness and thereby ultimately choosing his way of battling this disease.  Personally, I came to understand the fact that decisions made by my husband or myself have resulted in both, positive and negative outcomes however, those decisions derived from the absolute best of intentions and were meant to achieve a common goal  that being a cure or, a possible reprieve from this cancer.  Certainly, in retrospect occasionally, some doubts will creep in to my mind however, what we should have done or possibly could have done instead truly, is left to the imagination as we simply do not know the outcome of other approaches, and we will never know.

Just wanted to share this with you.

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33 (edited by duke0929 Fri, 27 Mar 2009 15:09:08)

Re: Strange Question

hi,
  just a update on my wife lucille since she had the sir-spheres procedure on feb.5...she has been having her blood taken once a week for the past 5 weeks and all the tests have come back relatively  the same....but i have noticed that her ca19-9 has gone from 26.2 on 2-16-09- 11.2 as of today... i have not been able to talk doctor, he had a emergency and will not be available until monday...and her cea is1.7... i am taking this as a sign that the sir-spheres treatment is working or at least thats what i am hoping...can someone shed some light on this for me...keeping everyone in my thoughts and prays ...ron.........never give up or take no for  an answer

Re: Strange Question

Ron....considering the fact that your wife has undergone sir-sphere and that the tumor markers are declining, substantially, my inclination is that a positive result has been achieved.  From what I have experienced, and from what we  have seen on this board, the trend of the CA 19-9's will be considered when evaluating the outcome of the treatment. 
I am so happy to hear the good news. 
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: Strange Question

thank you marion, my inclinations are the same and i hope and pray they are right.. i will be on pins and needles until monday when i see the doctor.. we still have another 2-3 weeks before they take the scan, the waiting is really taking its toll on me.. this site and the people on it are so helpful and wonderful.. i wish i could meet you all and take us all out for a good dinner and stiff drink.. keeping you all in my thoughts and prayers...ron

Re: Strange Question

Marion, so very well put, on your post about making decisions. I think you nailed it spot on!!!

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: Strange Question

Ron....the never ending waiting game of results such as scans, treatments, blood tests, etc.  keeps all of us on pins and needles, frequently.  It sure makes it easier when sharing with everyone on the board.  We all can relate due to our own experiences. 
Hugs coming your way,
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: Strange Question

Marion,
I think your post (about the decision to go for chemotherapy or not) should be put at the top of the page of every post so everyone can benefit from your wisdom.
Ron, we're all hoping and praying that the test results are STUPENDOUS so you can breathe easy for a while.
Joyce M

Re: Strange Question

Hi Marion,

You have captured the essence of how I feel with your post on chemotherapy in a way I havent been able.  My partner chose an alternative path initially against the advice of 3 different oncologists, I begged her to try chemo as well.  She was warned not to expect favourable outcomes after she deteriorates.  Three months were spent on an alternative program, one that promised cure, in that time she wasted away and eventually the ascites started, then they promised they could fix that as well.

We had a scan at that time and it should greater soft tissue and then we sought out chemo.   We have only had 5 doses and I'm not sure its doing any good.  I feel I've pushed her down this road and while we have had positive results from the change in nutritionist at the same hospital I just dont think the chemo is making a lot of difference although time will tell.

I am so scared that I have got her into a treatment that may cause her some harm.

I find myself dwelling on not pushing her when she was still so healthy.  Originally the oncologists were confident that they could give her 2 yrs and up to 5.  Now they are saying 'we'll continue if you want but you need to decide if you feel its helping, its rational not to have it'.

I feel I have really let her down.

Re: Strange Question

rortmanns wrote:

Hi Marion,

You have captured the essence of how I feel with your post on chemotherapy in a way I havent been able.  My partner chose an alternative path initially against the advice of 3 different oncologists, I begged her to try chemo as well.  She was warned not to expect favourable outcomes after she deteriorates.  Three months were spent on an alternative program, one that promised cure, in that time she wasted away and eventually the ascites started, then they promised they could fix that as well.

We had a scan at that time and it should greater soft tissue and then we sought out chemo.   We have only had 5 doses and I'm not sure its doing any good.  I feel I've pushed her down this road and while we have had positive results from the change in nutritionist at the same hospital I just dont think the chemo is making a lot of difference although time will tell.

I am so scared that I have got her into a treatment that may cause her some harm.

I find myself dwelling on not pushing her when she was still so healthy.  Originally the oncologists were confident that they could give her 2 yrs and up to 5.  Now they are saying 'we'll continue if you want but you need to decide if you feel its helping, its rational not to have it'.

I feel I have really let her down.

Hi;
I am new to this board so I am not familiar with your circumstances but really felt that I needed to respond to your post. You must not feel you have let her down. After I had a resection I wanted to take chemo for 3-6 months after. This was based on old protocols that I had learned 25 years ago when I did Oncology nursing. My Dr said I could if I wanted but he didnt recommend it based on the type of cancer. I was unable to tolerate the first month of chemo after surgery. My blood counts tanked after the first dose and barely came back. White count still isn't normal. I talked to another Oncologist that I had seen before and he thought I needed the chemo. Said they could adjust dosage etc. I was finally starting to feel better after being off chemo and recuperating from 65% liver resection and really was uncertain what to do. I want to beat this, so what do I do. I ended up seeking a third opinion. I figured 2 out of 3. Well, the third opinion was to not do chemo. My chiropracter/accupuncturist also felt that I was better off trying to boost my immune system rather than go back on chemo, especially when I had already had 7+ months of it. My point to you is that sometimes even the Doctors have different suggestions so how can you blame yourself?  She made the decision. Maybe if she would have started chemo earlier she would have had problems with it and been worse off. None of us have all the answers. We can only do our best with the information we have at the time. The main thing is that you are there for her. You are with her during these tough times and want what is best for her.  Hindsight is 20/20 and what ifs don't change anything. With this disease I dont think there is a right or wrong answer. What is the right answer for one might be wrong for someone else. She is blessed to have someone that cares as much as you do and I am sure she feels that way also. You'll both be in my thoughts and prayers.
Jamie

Re: Strange Question

I have to agree with many of the posts on this thread.   I have spent many, many hours regretting my dad doing this last round of chemo b/c he just went completely  downhill after his 2 month cycle, but a very wise person(Marion) reminded me that my dad Wanted to do whatever he could to try to beat this cancer.  My dad has always been the absolute patriarch in our family, and he wouldn't have settled for not putting up a fight.  His idea of fighting was chemotherapy.  I do remind myself of that daily, because guilt on top of sadness would be impossible to deal with now.  Us caregivers are human, and we are forced sometimes to help make very difficult decisions, and there is no "right or wrong" decision.
Peace
Barbara

The  Lord is my shephard

Re: Strange Question

rortmans....no one knows whether an earlier chemotherapy intervention would have resulted in a better response in fact, there are some, who would never even consider anything but using a natural approach in order to combat this disease, and they are fairing just as well/or not so well. 
If the experts agree/disagree then how possibly are us lay people in a better position of determining the right course of action?  Therefore, all of us are doing the absolute best to help our loved ones fight this cancer.  You have been a rock in this fight.
Hugs coming your way,
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