Well y’all Myhubby58 went thru his 6 rounds of taxotere and it brought his psa down to the 70...
But it’s stuck right there in the 70.00 so the Dr decided to try more taxotere until the end of life. After the first of the second round,Myhubby58 developed an infection in his bloodstream and I almost lost him.. so now the Dr. is going to discontinue chemotherapy because he said that his body is not strong enough after being hospitalized for 5 days pumping him antibiotics.He is now giving him the option to venture out for clinical trials and consult at other hospitals.. I am so lost for words..it feels like a knife is in my heart right now..please help
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So sorry to hear! How is he doing otherwise? Is he able to walk around? In pain? Sleeping a lot? Some effort should be given to getting the symptoms under control as well as fighting the disease.
Has he had genetic testing? Certain mutations can open the door to other treatment options.
Now dr is telling us after genetics testing that we should go back to MD ANDERSON for clinical trials.. but how does that work? Do you have to pay for them? I know insurance does not pay.. he now has Medicare..
Yes, the dr just did the genetic testing which I feel should have been done wayyyy before now.. he has Idh2 mutation..which only found in lukemea patients .. which I feel like that what he is telling us is Myhubby58 has lukemea..when he was hospitalized last week he had very little white blood count..
He does a lot of sleeping and is always in pain on his left side ever since he was diagnosed in 2017 that pain has never left no matter what they give him..
That is very distressing! My experience has been that all treatments aggravate my pain and fatigue at first, but things improved gradually as the treatments worked, and especially after chemo was over. If his treatments aren't working, then they're just making him feel worse. Very distressing indeed.
IMHO, when considering further treatment, it's a deeply personal decision whether to take a chance on a possible future benefit if the treatment works, versus the near certainty that it will make things worse in the near term.
It's a decision you must both make together (as they say, "we have cancer"), and if you do decide to pursue further treatment I'll be cheering for you and pointing out that even a small chance of success is still a very real chance of success.
I want to say I’m so sorry for what I read ,Maybe you have chance for clinical trials.Have you asked your doctor about test of endocrine prostate cancer or evaluation of mutations? I know he has had XTandi but Zytiga can sometimes have effects on men who are resistant to Xtandi,Keeps us updated about what’s going on and I’ll be there for your whenever you want
Given this treatment history and the fact that your husband can not likely tolerate another round of chemo the suggestion to look at clinical trials is a good one. Best wishes.
Sorry to hear about your husband. I saw a lot of good advice here. I second taking him to a PCa specialist at MD Anderson. You need someone to be able to guide you thru different clinical trials that’s appropriate for your husband. But first you need to strengthen him after the ordeal he’s had. Ive been in hospitals for multi-day stays and it drains you.
You still have a long way to go. Don’t panic.
I’m doing the Taxotere right now...it’s not a walk in the park...that’s for sure. I did a clinical trial a while back and it was “free”...but it was a randomized trial. The docs at MD will be able to walk you through the process. Hopkins in Baltimore is also a great option...there I suggest Dr. Antonarakis, he’s involved in a lot of the cutting edge research.
Your doctor is very remiss if s/he has not discussed end-of-life care with you and your husband. This includes both palliative care and hospice. Clinical trials offer no guarantees and can have many deleterious side effects. Depending on the stage of the trial, some of these experimental treatments may not yet have been proved safe, never mind effective.
Before even considering clinical trials , you and your husband need to discuss his goals. Does he want to live as long as possible regardless of the quality of his life? Or to live as long as possible without debilitating side effects and pain. Does he want to die peacefully and pain free at home, or in a hospital after being futilely treated for various medical problems? One you have determined his goals, then you need to have a discussion about end-of—life care with a palliative care physician.
If you have not already done so, I recommend that you and your husband read “Being Mortal” by Atul Gawande and “Dying Well” by Ira Byock. Whether your husband has 3 months to live or 12 months, it is essential to educate yourselves to help ensure that your husband has the best end of life care. My friend entered hospice with a 3-month life expectancy but she lived 9 months because of the excellent hospice care she received.
My husband will soon be entering hospice and my goal is to ensure that our last days together will provide wonderful memories for me when he is gone.
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