WHAT NEXT, BEST ESTIMATE?

JONSEY61 · New User Joined: 20 Jun 2007 Posts: 3 Location: NEW MEXICO

My sister is undergoing radiation for secondary metastatic carcinosarcoma. She has already had chem x2 and radiation x1. New lesions are cropping up in other bone sites. Had a tumor in her spine, now lesions on both hips and in tail bone. Expect that bone scan will show new site in shoulder. She is type 2 diabetic on insulin, no other illness except for needing transfusions due to radiation. They are now talking quality vs quanity of life. What does that mean to a pt with extreme pain? What most likely will end killing her? No one seems to want to address something we need to know. One site said 24 to 36 months. Is that a reasonable expectation?
Tahnks, jonsey61

Muttsmom · Posted: Thu Jun 21, 2007 4:08 pm Post subject: Re: WHAT NEXT, BEST ESTIMATE?

Hi,

Where was her primary tumor?

The oncologist is the one that knows about her pathology report, how she's responding to treatment and what options are left, so they would be the only one that would have the best guess, based on experience to how long your sister has. I sure wouldn't go to the internet to find out something like that. Way too many things are involved for an internet site to be able to give any info on something that important. Like my onco said, stats are numbers and we're all individuals. I would sit down with her onco and get the answers you're searching for. Is her onco saying that there's no more treatment they can try, or are they still trying different chemos etc. I know for BC mets to the bones, radiation helps in pain management, and of course with extreme pain, there are pain patches and other means to control the pain.

I'm so sorry your sister is having to deal with this horrible disease and your family is suffering as well.

I pray everyday for a cure!!!
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

brainman · Posted: Thu Jun 21, 2007 4:29 pm Post subject: Re: WHAT NEXT, BEST ESTIMATE?

I am so sorry for you and your sister! I totally agree with Nancy. I wish we could help you. But your sister's case is too complex and we know so little of her medical history. Your best source of information is her medical team. Make them address the issue! They might not be able to tell you exactly what will happen to your sister, but they can give you better information than we can. I will keep you and your sister in my thoughts and prayers. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

JONSEY61 · New User Joined: 20 Jun 2007 Posts: 3 Location: NEW MEXICO

When I posted the first question, what next?, I guess I already knew. A primary tumor was never found in my sister's case. She had in excess of 100 tumors throughout her abdomen besides the tumor in the spine.. not in the column but the bone.. and another lesion on her hip. After chemo x2 and radiation x2 she is now at this point... the cancer has spread to her liver, she has multiple bone lesions that radiation cannot get ahead of, they are forming faster than before. They have put her back in the hospital to try and control the pain, so that she can make a decision about more chemo vs ....death with little pain. At least that is what i see her options to be. I never really thought about how hard death is on the living. I lost my brother, 3 yrs younger than me, to hepatocellular carcinoma 3 1/2 yrs ago. He got sick and in less than 3 wks from his admit to the hospital he was gone. I was holding his hand when he died. I want to be there with my sister, but I live clear across the country. As the main support of my family I need to work as long as possible before I go to her. But how do you gauge time in a situation like this. It has left me depressed and unconnected somehow. Thanks for listening.
JONSEY61

brainman · Posted: Fri Jul 06, 2007 8:23 pm Post subject: Re: WHAT NEXT, BEST ESTIMATE?

Jonsey, my heart breaks for you and your sister. How terrible!! I don't know what to tell you about going or waiting until later. Keep in touch with her the best that you can and she will let you know when to go to her... in other words, find a way to "connect." I know that is easier said than done. What support system do you have? Does your sister have any support where she lives?

I continue to hold you and your sister in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

discoclub · Posted: Sun Jul 08, 2007 5:23 pm Post subject: Re: WHAT NEXT, BEST ESTIMATE?

Cancer seems to be very different for each individual. My mother has been NED for 14 years now. DX stage 3 1992, Surgery Chemo, radiation, etc.

If you read the posts on this board many are having recurrent cancer in a few months. Other have Mets in a few months. Still others seem to have "Remission" for years. Oddly, the Clinical Meds are mostly the same with each of these individuals, most have the same type of surgery and most have the same type of radiation.

So, what sets them apart? some would argue positive motivation... Until you read about happy people dying.. and nasty people living.. Prayer?? MAybe, but no way to substantiate who or how much prayer for what result.

MAybe the long term survival is in discovering that YOUR BODY is not getting something... or is getting too much of something.

I found out what was wrong with my body, and I feel the cancer is going away. I will know thursday for certain.

Personally, I believe that "Getting Cancer" is a wake up call from your body that something is wrong. That YOU need to fix "Something" within your body. Once you fix "YOUR BODY" to quit reproducing these defective cells and to start killing the ones that ARE being produced, then you can bring your body back into balance and begin to live cancer free for years.

So, to answer your question... I believe that those people who "get it" live longer lives in remission than those who simply follow the advice of their docs.

To live longer balance your body. How, is up to you to learn. I cannot post that here.

My belief points to these problems: excess sugar (fructose, sucrose, and refined sugars) excess carbs, excess stress. toxification, poor diet, lack of exercise. and generally not appreciating your body on a daily basis.

JONSEY61 · New User Joined: 20 Jun 2007 Posts: 3 Location: NEW MEXICO

Thank you all for responding to my posts. It has helped to hear from and to read about those who have had to deal with cancer. My sister has opted for more chemo, it may give her a little bit more time. They put her back in the hospital to control the pain and she is doing not too bad right now. I feel that if we get another 6 months it will be a gift. I am grateful for that hope. She is not scared of dying and I am not worried about her as far as where she will be. We both know we will be back with the rest of our loved ones who are already gone. That is a great comfort. And she is a fighter so I believe I will have a little more time with her. So thank you all.
JONSEY61

Muttsmom · Posted: Mon Jul 09, 2007 9:05 am Post subject: Re: WHAT NEXT, BEST ESTIMATE?

Hi Jonsey,

Thanks for updating us on how your sister is doing. She definitely has alot of fight in her, even as sick as she's been. God bless you both. I think it really important to feel at peace where we are spiritually, and to know if we don't make it, we truly are going to a better place, even though we'll miss our loved ones. I still believe in hope and who knows what is right around the corner, or that this latest chemo could really do some damage to the cancer. I'm not trying to give you false hope, but without hope, what do we have?

Please let your sister know that one of her BC sister sends her love and prayers.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

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