Update From Us: Hi everyone. My... - Advanced Prostate...

Advanced Prostate Cancer

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Update From Us

MelaniePaul profile image
9 Replies

Hi everyone.

My husband has been feeling very unwell over the past while with nausea, headaches, weakness all over and he calls all of that his "PSA-feeling" or "cancer-feeling" as he had it before when the cancer was spreading.

My husband has been on Aberaterone for the past three years, and we have been aware for quite some time now that it is losing its effect because my husband's PSA has been slowly rising again. We don't have the most recent result from the blood test yet, but the previous one had shown a jump from 27 to 89.

Yesterday morning, we had to go to the hospital. My husband felt so awful. And also he has lost weight: he is only 56 kg now, which means he has lost about 4 kg in three weeks. He didn't have any apetite and each time it was difficult for me to get him to eat at least a little bit. So we went to the hospital. Our normal oncologist wasn't there and not his usual colleage either. So we got to talk to a doctor we hadn't seen before. Paul described his symptoms and the doctor agreed to put him on anti-nausea medication and to increase Predniselone from 10 mg to 40 mg for a couple of days to make him feel better. "In terms of what to do next," he said, "I can't tell you anything. But it isn't looking too good." He then asked us if we wanted him to go over the scan results with him. I would have loved to do that because I felt it would prepare us for the conversation with the professor next week, but Paul didn't ant to see them. "Well," the doctor said, "there is some spread to the liver. And there are possibly other areas of concern too." "So it will definitely be Chemo then?" I asked. And he said, "I can't really tell you. But I think so."

He gave Paul supplements to take to build himself up again - for the Chemo, he said, - and reminded him as well to eat as often as he can a little bit.

Then we left.

Is there anyone else here with a spread to the liver? And what did that mean for you? Is there still hope that Chemotherapy will work?

Please tell us your story.

Mel and Paul.

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wrando profile image
wrando

There's a trial using Radium 223 and Atezolizumab for which your husband might qualify.

MelaniePaul profile image
MelaniePaul in reply towrando

Thanks for mentioning this. We will mention it to our oncologist.

I really don't know if my PCa has spread to my liver. But since I'm already on chemo, it probably wouldn't effect my course of treatment anyway.

As far as I know, Taxotere chemo can be effective with liver metastases and would probably be the next step for your husband.

I'm on chemo now, going to get my 5th infusion tomorrow so I can say the side effects are tolerable for me and also for most people. I have not experienced any loss of appetite on chemo at all, in fact I'm gaining weight. On the other hand, before I started treatment I was losing weight and appetite from the cancer.

There's a lot of fear out there about chemo from what I can see on forums, but I would encourage anyone who needs it not to be afraid of chemo. Most people tolerate the side effects well, and the reduction in quality of life is minimal for most. I have one week out of 3 that I don't feel that good, but it's not that bad, especially compared to the cancer. Good luck wth your husband's treatment and we all wish the best for him.

MelaniePaul profile image
MelaniePaul in reply to

Thank you for that.

We wish you good luck with your treatment.

Yes, we are almost sure that the next step is going to be chemotherapy now. The mets to the liver are quite a worry. And my husband can feel it too. Even now that the oncologist has increased his Steroid from 10 mg daily to 40 mg daily and has given him some anti-nausea medication, he is still feeling extremely exhausted and I can't help thinking of the fact that reduced liver-function often leads to extreme fatigue in people. So we think it is definitely time to do something and rather sooner than later.

Mel.

Sisira profile image
Sisira

Radium 223 ( Xofigo ) can deal only with bone mets but this trial may be using other breakthrough drugs as well . IMO gregg57's reply contains more relevant and useful treatment details for your husband. When the cancer spreads to various other parts of the body, you need systemic ( whole body ) and cytotoxic ( cancer cell killing ) type of treatment and such drugs are the chemotheraputic drugs such as Docetaxel ( Taxotere ). They are always given with a steroid. There is nothing to fear as gregg rightly points out. When Docetaxel does not answer, Cabacitaxel ( Jevtana ) can be tried. Sometimes combinations are also used like with Carboplatin. All are in the same group of drugs. Now the STAMPEDE Trial has proved, using chemo early with ADT or chemo with Zytiga can extend survival significantly in advanced metastatic PCa. Before using chemo, learn how to deal with the side effects which can be severe for some individuals though they can be tolerated because cytotoxic drugs kill the fast dividing other good cells in the body too. During treatment, using ice in the mouth, ice pads for the hand fingers, feet as well as a pad on the head can help to avoid known side effects such as mouth sores, hair loss and peripheral neuropathy. Some undergo chemotherapy without any of these preparations and take the side effects as they come because life is still worth living. Physical weakness obviously can be a great disadvantage in such aggressive treatments. Please don't lose hopes and give up. Get hold of a good oncologist and use all possible treatment options available. As wrando has pointed out if qualified, entering a Trial is also a meaningful last line of defense.

Wish you the best and relief for your husband.

Sisira

MelaniePaul profile image
MelaniePaul in reply toSisira

Hi Sisira.

Yes, we do believe that there are lots of options out there for us to try. And we do think that our oncologist is very good, although we sometimes wish that we would work with two or three in order to get different opinions. But we feel well looked after with the oncologist we have.

Interesting point about combining Chemotherapy and Aberaterone Don't know if it would be helpful in my husband's case, though, since Aberaterone is no longer working; at least that is what it looks like to us, although, of course, maybe it does and it is just not strong enough anymore and in order for it to keep working it would need some other support.

Maybe Provenge would be an option as well.

Radium 223 wouldn't be an option for us as our primary concern are the liver mets and not the bone mets. So it is important to do some kind of systemic treatment, we think.

Let's see what the oncologist suggests to do.

We had actually planned to go over to Germany on Wednesday for two weeks. But we have no decided not to do it unless my husband is feeling better and and unless the doctor needs us to wait with the new treatment. So, if my husband is well and the oncologist says that he can't start new treatment right away, we will probably go - even if it is not more than a bit of distraction for us. But if Paul is still feeling the same as now and especially if he can start new treatment right away, we will definitely stay in Dublin.

What happens when Aberaterone treatment is exchanged for Chemotherapy? I mean, can you just stop taking Aberaterone and start with Chemo? Does there need to be a break between the two? And how about the hormone treatment? Will that still be going on or will it be stopped? - I have heard that in somcases people take Testosteron first in order to get stronger for the Chemo? (which doesn't seem to make sense to us because it has always been important to keep Testosteron levels down)

Mel and Paul.

Sisira profile image
Sisira in reply toMelaniePaul

Mel, I feel you are very rational even on medical grounds. When you have to change the existing treatment to a new more aggressive regimen like Chemo, all the questions that you have raised in the last paragraph of your above text become so natural and meaningful. I am not a doctor and also not sufficiently educated on your husband's PCa pathology. The one thing I can say, the latest approach is to go out of the box and hammer the mCRPC or whatever as hard as possible, without going in a particular sequence. The Rule is - as early as possible without any loss of time. In the latter stages CRPC cells will have better brains than our oncologists and they will have their own chemical factories and will use everything for a lethal blow! You are correct, making more testosterone available can be detrimental but on the other hand it makes no difference for hormone refractive cancer cells. You may have herd of a new treatment called BAT ( Bipolar Androgen Therapy ) in which a very high dose of Testosterone is given to shock the cancer cells and the procedure is supposed to kill all or most of the aggressive PCa cells. Some innovative oncologists practice this procedure but it is still under trial. Since you are happy with the doctors who treat your husband, you may put these final questions to them. I hope in case they use chemotherapy, the doctor who is going to implement the procedure will clear all your doubts and do it with a curative intent so that your husband will get the maximum survival benefit.

All the best

Sisira

MelaniePaul profile image
MelaniePaul

Hi Sisira.

Thank you for saying that you feel that I am a rational person and even on medical grounds. Well, I suppose I can be. People have often told me that when I speak about my husband's situation I sound very rational and almost as if I was talking about someone I don't know. I can be a very emotional person as well and listen a lot to my intuition and my heart and so forth. But in this situation I feel it is the best thing for my husband and myself to be rational. It makes me think about what I read here on the forum and what the doctors say and will, ultimately, help me to support my husband in making the right decision on Tuesday.

I also think, though, that being rational is a way for me to cope with my emotions. I sometimes think that fear, anxiety, despair, hopefulness and all of that could be too overwhelming if I opened to them fully, so it is better to keep going with this rational way for a while.

It will be interesting to see what the oncologist suggests on Tuesday.

This morning, my husband is feeling a lot better. And we are kind of thinking now that maybe the way he felt over the last couple of days was also related to an over-all tiredness rather than the cancer alone. He has been quite busy recently and I think he doesn't find adjusting to a new situation in which he can't do as much as he would like or is used to very easy.

Best wishes,

Mel.

MelaniePaul profile image
MelaniePaul

Good morning all.So today we have the appointment with our oncologist. Needless to say that we are both very nervous. It is funny to be so nervous because the results from the scans which we are going to discuss won't change anymore; I mean, they are out now and this is what we will be dealing with. I think fear and nervousness come because we so much want to make the right decision and we don't know - nobody ultimately knows - what the best decision is. Really, I can't wait to see the doctor now and discuss it all.

I will keep you posted.

Mel.

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