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No more chemo

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User
Posted 16 Apr 2018 at 10:33
Dad was due his 3rd chemo today but after being admitted following the first 2 sessions we were told they're not giving him any more. He will be on the three monthly injection alone. I know the injection is important and chemo an add on but I can't help but feel like this is the worst news we could have got today.
Miffy
User
Posted 16 Apr 2018 at 15:39

I am really sorry to hear this - did they only make the decision when he got there?

The chemo is important when it works but hold on to the fact that it is a relatively new treatment regime and we have men on here that were diagnosed many years ago and still haven't had chemo - the HT might continue to work just as well without it.

Be sad for tonight and then put your game face back on tomorrow.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Apr 2018 at 16:43

Sorry to hear this. My husband did manage his 6 sessions of Chemo but because he had a similar problem with low neutraphils after 1st treatment he was on a lower dose for the rest of the treatments. While on Chemo his PSA had reduced each time and we were so pleased but as soon as Chemo finished his PSA started to rise. We were told last week that the reduced dose may not have helped him. We have been offered either Abi or Enzo or trials so are looking into trials at the moment. With hindsight I'm not sure we would have continued with Chemo but we had been assured that even the reduced level would be effective.
I do hope they can come up with another treatment.

User
Posted 17 Apr 2018 at 20:29
The decapeptyl injection is his best chance. The chemo is only a new thing given so early and it MAY help to prolong the efficacy of the implant, there is no certainty/guarantee that it does. The infection he may have had is Neutropenic Sepsis, it can kill in a matter of hours if not found early, it is classed as a true medical emergency. My OH had it and felt fine, his temperature was only 37.7 when they admitted him to hospital. Because there is no certainty that the chemo is helping it is not worth running the risk of getting the sepsis unnoticed and it possibly killing the patient.

Were you with your father? If not could you not telephone the care team and have a chat with them? I am sure they would be happy to explain in more detail, even if your dad had to give permission for them to talk to you.

My OH only had one chemo. He had the Neutropenic Sepsis and was in hospital for five days, when the next chemo was due he had chest pains walking into the hospital so the chemo was cancelled while they checked his heart out, as the oncologist said, the heart has priority over the cancer, at least with the cancer we are hopefully talking in years, if he had a heart attack, well obviously the cancer would not matter much!

No one ever mentioned Neutropenic Sepsis at any point, think they don't want to scare people.

My OH is now 'only' on the HT and I believe he is still on the best treatment available, sadly there is no certainty with this, everyone reacts differently to the treatment and the condition. We do have to put our trust in the doctor, they understand all the medications better than we ever will.

It may be worth ringing the nurses on this site, I am sure they would be able to put your mind at rest a bit and answer some of your questions.

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User
Posted 16 Apr 2018 at 15:39

I am really sorry to hear this - did they only make the decision when he got there?

The chemo is important when it works but hold on to the fact that it is a relatively new treatment regime and we have men on here that were diagnosed many years ago and still haven't had chemo - the HT might continue to work just as well without it.

Be sad for tonight and then put your game face back on tomorrow.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Apr 2018 at 16:43

Sorry to hear this. My husband did manage his 6 sessions of Chemo but because he had a similar problem with low neutraphils after 1st treatment he was on a lower dose for the rest of the treatments. While on Chemo his PSA had reduced each time and we were so pleased but as soon as Chemo finished his PSA started to rise. We were told last week that the reduced dose may not have helped him. We have been offered either Abi or Enzo or trials so are looking into trials at the moment. With hindsight I'm not sure we would have continued with Chemo but we had been assured that even the reduced level would be effective.
I do hope they can come up with another treatment.

User
Posted 16 Apr 2018 at 17:39
Im not sure when the decision was made but im assuming it was well before this morning. Although he went in as normal to get weight checked etc and bloods were back to normal. We thought things were going ahead as planned so it was a bit of a shock.

This is what is worrying me, I know there are many lucky men out there whose hormone treatment has been enough but I can't help but panic that it could go the other way.

I'm sorry the chemo wasn't as effective as you would've wanted but it's good that they are on the ball with other treatments. We were told when dad was last admitted that a change in dose and other methods could be carried out but today we were sent on our way with not much reassurance. I'm assuming an appointment with the oncologist will follow this. Hopefully.

Miffy
User
Posted 17 Apr 2018 at 10:29

So sorry to hear this Miffy. I hope you get a full explanation of the reasons for stopping in the very near future.

Thinking of you all

Dave

User
Posted 17 Apr 2018 at 17:42
I am so sorry to read this Miffy it must be really really hard not knowing why they have stopped along with the disappointment. I really hope that an alternative method is now considered and that you don’t have to wait too long to find out what is happening. Thinking of you and sending hugs xxx
User
Posted 17 Apr 2018 at 18:41
I can understand that it's maybe in their opinion not worth the risk, one of the girls had apparently said to dad that people have came into hospital in his scenario and not came out so it's obviously very life threatening but it's so hard to fathom that when dad felt not too bad through it all! They did say they allow for 2 infections through the chemo but with him being so well we didnt even think they were classed as infections. We just need to have faith in the professionals.

As far as we know there will be no alternative it will be the decapeptyl injection and 3 monthly reviews. I think if we knew it was going to be years before we need to look into other treatments then I certainly would feel a lot better but the not knowing whether or not his psa is going to stay down from one review to the next is nerve wrecking.

It feels like the best chance has been taken away from him. I don't know if we will see the consultant now or in 3 months time but I'd really like to discuss alternatives and explore all areas. Dad is fit and healthy and if other treatment means this can help him be like that for much longer then I want to know about it.

Miffy
User
Posted 17 Apr 2018 at 20:29
The decapeptyl injection is his best chance. The chemo is only a new thing given so early and it MAY help to prolong the efficacy of the implant, there is no certainty/guarantee that it does. The infection he may have had is Neutropenic Sepsis, it can kill in a matter of hours if not found early, it is classed as a true medical emergency. My OH had it and felt fine, his temperature was only 37.7 when they admitted him to hospital. Because there is no certainty that the chemo is helping it is not worth running the risk of getting the sepsis unnoticed and it possibly killing the patient.

Were you with your father? If not could you not telephone the care team and have a chat with them? I am sure they would be happy to explain in more detail, even if your dad had to give permission for them to talk to you.

My OH only had one chemo. He had the Neutropenic Sepsis and was in hospital for five days, when the next chemo was due he had chest pains walking into the hospital so the chemo was cancelled while they checked his heart out, as the oncologist said, the heart has priority over the cancer, at least with the cancer we are hopefully talking in years, if he had a heart attack, well obviously the cancer would not matter much!

No one ever mentioned Neutropenic Sepsis at any point, think they don't want to scare people.

My OH is now 'only' on the HT and I believe he is still on the best treatment available, sadly there is no certainty with this, everyone reacts differently to the treatment and the condition. We do have to put our trust in the doctor, they understand all the medications better than we ever will.

It may be worth ringing the nurses on this site, I am sure they would be able to put your mind at rest a bit and answer some of your questions.

User
Posted 18 Apr 2018 at 08:33
Hi Kita, yes that was what he had it was in his notes. Thanks for explaining the seriousness of it. That has helped to clarify things.
Miffy
 
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