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From Bad to Worse...


Summer

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After a week of severe stomach cramps and back/shoulder pain, and a visit to the ER on Tuesday, our Oncologist told us today that my S.O.'s CT scan showed cancer in his adrenal glands and abdomen. We had just started 2nd line chemo (first treatment of Topotecan 10 days ago) and thought the abdominal issues were side effects of the chemo and/or pain meds (they still might be, hard to tell). Doc informed us that we may want to consider hospice at this point. He agrees that it's too early to tell if this 2nd line chemo is effective, and will schedule more if we want it (we do and have scheduled the next tx), but he seemed to think that quality of life is more important. He says radiation tx is not an option for the mets as it would cause too much damage. He says we may be reaching the end of effective options here.

I feel scared and confused. Feels like all the positive thoughts have gone out the window. Can we still hope? Should we continue the fight? We both want to, though Doc was quite clear about the poor prognosis at this point, and we are preparing for the worst. Prayers are really really appreciated right now.... :cry:

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Summer,

I say NEVER give up. If you and your SO feel you

want to continue fighting, do it. Get another opinion or

at least another doctor, there are so many other treatments.

God is the only one who determines when our time is up.

It's a decision that you and your SO other have to make.

Each situation and patient is different. Just remember,

we are here for you both. Please keep us posted...

You are both in my prayers,

God Bless,

Karen

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Hi Summer

So sorry to hear this news. But I am even more sorry to hear that your doc seems to have thrown in the towel. If your SO is not ready to throw in the towel then it is time to locate a new doc. I do agree on quality of life, this is a hard decision no doubt. Just know the doc is recommending what he "thinks" based on previous patients, etc.. We are all different and respond to tx's differnt. Do not let him or anyone else make this decison for you, please contact another doc, and another and another if that is what it takes to find someone who is willing to fight for your SO's life.

You and he are in my prayers and keep us posted.

God Bless

KIm

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Summer.

I am hoping that someone who has been in the same situation as you are in right now, will chime in and give you some live words of encouragement.

The most encouraging words that I hear you speak is that you and SO are not ready to give up. I applaud your fighting spirits!! Too many go down without a good fight and throw in the towel prematurely.

Please explore any and all options before choosing quality of life over life.

Love and prayers.

Cindi o'h

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I feel so bad for your news Summer, but keep that fighting spirit going as I don't like the alternative if you listen to the doctor and just give up.

Maybe at this point you should go to another doctor, just for another opinion.

Good luck... Never give up!!

Maryanne

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Summer,,,, I would say get another opinion, and continue the fight. The onc my husband had just gave up,,,,,,,,,,,,,and so did my husband. If I had the support and this board 3 1/2yrs ago, things would have been very different, we would have sought a 2nd or even a 3rd opinion. My husband had no mets anywhere but the lung. The lung mass was 6cm and the doctor gave up based on the fact that after 5 rounds of chemo and radiation, the lung mass had not shrunk. So the doc said my husband couldnt take the 6th round of chemo. I really think this doc quit too soon, and no other options were offered to us. We took this onc at his word, and I feel we were not well informed. Truth is we didnt know where to go to get informed, other than his oncologist. We felt defeated. My husband was gone in less than 3 months. Soooo,,,, please dont call it quits yet.....go get those other opinions, and find out what other drugs out there could help, and make a well informed decision after you have all of the info. This board is a gift.

Peace and blessings that you find the info you need and perhaps a new doc with a new outlook

Prayers

Annjael

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Hang in there and keep fighting. Dont give up because of something a

doctor said. Get a doctor that will fight along with you.

I like Annjael wish that I had found this site when my mom was first

diagnosed. Her oncologist told her there was no sense in trying to fight.

Mom just gave up the fight assuming he had to be right.

My thoughts and prayers go out to you both. Keep us updated and find

a new doc. Haylee

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Summer,

Although I can certainly understand your being devastated, I am in complete agreement with everyone else here. You will know when it is time to stop fighting and right now it is NOT THE TIME.... You said it yourself you are not ready to give up SO DO NOT!!! My prayers are with you....

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thanks, all of you, for your encouraging words. And Don, I appreciate you pointing out the other possibility .... right now things are not looking good. We had to go back to the ER today, my partner had multiple problems - bladder not working and also tremor, difficulty coordinating movements of his hands and walking, weakness. Bloodwork looked ok, catheter was a relief, but no clue as to what is causing all of this. The slight confusion and motor function issues frighen me the most. It is probably more obvious to us who know him well.

They did do a CT of the brain but no obvious issues were found, and brain mets don't show up on it. I will ask again about that MRI when I talk to the oncologist on Monday. I had pushed for it since he had WBR in October but my partner did not want to pursue it - his Doc said why do it, he's already had the max radiation with WBR. Hmmm... I had asked the radiation onc (who is with a different health system as our HMO outsources all radiation tx) prior to his treatment whether there would be additional radiation options after WBR and he had said yes, there are other things we can do. I assume gamma knife. But I've not been able to get my partner back to the radiation onc for a follow up. My partner wants to trust the process, and he trusts his oncologist. It is frustrating, but - what is, is. We will look at where we go from here.

I don't know if he is well enough to receive chemo or radiation treatment as things are now. At this point he is very ill and I'm fearful things will get worse. This is so sad, and my heart is breaking, seeing him suffer. He was doing so well just a few weeks ago....

This turned into a much longer post than I had intended, but it feels good to write down my thoughts; all of you know what I am talking about. Thanks for being here.

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thanks, all of you, for your encouraging words. And Don, I appreciate you pointing out the other possibility .... right now things are not looking good. We had to go back to the ER today, my partner had multiple problems - bladder not working and also tremor, difficulty coordinating movements of his hands and walking, weakness. Bloodwork looked ok, catheter was a relief, but no clue as to what is causing all of this. The slight confusion and motor function issues frighen me the most. It is probably more obvious to us who know him well.

They did do a CT of the brain but no obvious issues were found, and brain mets don't show up on it. I will ask again about that MRI when I talk to the oncologist on Monday. I had pushed for it since he had WBR in October but my partner did not want to pursue it - his Doc said why do it, he's already had the max radiation with WBR. Hmmm... I had asked the radiation onc (who is with a different health system as our HMO outsources all radiation tx) prior to his treatment whether there would be additional radiation options after WBR and he had said yes, there are other things we can do. I assume gamma knife. But I've not been able to get my partner back to the radiation onc for a follow up. My partner wants to trust the process, and he trusts his oncologist. It is frustrating, but - what is, is. We will look at where we go from here.

I don't know if he is well enough to receive chemo or radiation treatment as things are now. At this point he is very ill and I'm fearful things will get worse. This is so sad, and my heart is breaking, seeing him suffer. He was doing so well just a few weeks ago....

More than I had intended to say, but it feels good to write down my thoughts here; all of you know what I am talking about. Thanks for being here.

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