I think that this is an excellent place to start, in that we never know what the next day can hold, nor do we understand instances until they face us. In essence, I was personally put in Palliative Care by my Oncologist 3 months ago. I signed a POLST form noting what I did and didn't want in the form of anymore treatment. Since I'd had 28 radiation treatments, 2 cycles intravenious chemotherapy and 15 cycles Targeted chemotherapy. Some of those chemo elements brought more hardship on, or lessened the operation of other body system organs. When the next step came, a loss of weight, waist size, appetite and easier tiredness, "it was noted since I couldn't take any more treatments in conjunction with my epilepsy and migraine headaches that I would be put into Hospice--since Hospice treats my condition of pain while helping me do what I can each day. The other significant factor was a mestasation growth to my liver and two uptake area's (which indicated that the cancer was in my blood. Next came the realization that uptake (ripeness for cancerous growth) had reached my spleen, GI and GU tracts. That is why it's important to learn and know what the next step is, so as to lessen anxiety, worry and speculation.

Those were my instances which are changing daily, but only being treated to avoid pain (primarily bone pain), until the time I may pass away. Fortunately, I also have no fear or anxiety at this stage of my life.

irvkay312

With me, having Islet Cell cancer disgnosed in 2009 my journey began with radiation, intravenious chemotherapy, targetted chemotherapy, until the last octreo tide scan showed mestasation to the liver. That point was where my Oncologist put me on Palliative Care (to treat the conditions that were treatable, primarily pain). Yet, when my updated CBC panel and Marker growth showed more changes, weight loss without tring, more pain and the cancer being in the blood through the liver, it was suggested I have a Hospice consult. After that consult, I was put into Hospice, since my treatments to cure are over; the condition is terminal and the cause from this point onward is "quality of life." Live one day at a time with whatever significant problem you have, until you reach the point where it is terminal and there is no more treatment. That's what I feel people should learn about, so that when the time comes, they can be satisfied and have the information with which to make these end of life decisions.

irvkay312

@irvkay312 - I want to focus on one sentence in particular. You said "Some of those chemo elements brought more hardship on, or lessened the operation of other body system organs."

This was the case for my Dad too. While the palliative chemo may have prolonged life, he found the extreme side effects too hard to manage and couldn't enjoy what was left of his life. Thus he chose to stop chemo and lived for another 8 months and enjoyed very precious time with my mother.

I should note that the chemo would not have "cured" him at this point. Its purpose was to shrink the tumor and give him a little longer.

Yes, the intravenious Adriamyacin and Streptozocin I was told could cause problems in later life. I didn't think much of that at the time. Yet, instead of the heart being the area of concern in later life "the chemo did a job on my kidneys, per my Nephrologist." In 5 years, it took away my ability to get a full nights sleep without having to empty my bladder every 1 to 2 hours. It also indicated a change in my blood panels and they began getting taken more often. Those are reasons to stay on top of the matter if you can and seek Quality of Life in Palliative or Hospice Care. The last medicine used was Sandostatin, again said to shrink the tumor in 2016--after 2 shots of it I Quit because I couldn't live with the adverse affects it imposed on me

irvkay312

That is right for the most part. However, when I went through my radiation<br>and chemo; I was told that "it's the policy of this group (doctor/practice)<br>to inform you of future concerns that this chemo could bring to your<br>health." Additionally, when I was given the medicine of Sandostatin to<br>"shrink the tumor size, by the 2nd. shot--the question posed "was how are<br>you doing with this and how are the adverse affects treating you?" At that<br>point, was when I could no longer take the adverse affects and discontinued<br>its use in lieu of A Greater Quality of Life.<br><br>irvkay312<br>

That is exactly why I had my chemo, to just shrink the many areas where it had metastasized to and hopefully extend my life. It has been almost a year and a half and I am still enjoying my 5 grandchildren ! So I am receiving "palliative care" and we will accept hospice help when ...as I put it...I "start to actively die" for now I try to live my life as normally as I can and do what I am still able to do. I think we have to be willing to accept help not only for ourselves but for our family members. I am constantly thinking of how difficult this journey has been for my husband and son and close friends. Whatever I can do to help them ease thru this I will do.

I also have signed a POLST