Advanced Prostate Cancer
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Things Going Well But A Little Nervous

Hi everyone.

As you know, Paul finished his sixth round of Carbo Platin on 28 December.

Now, four weeks after his last infusion, he is still very tired and exhausted. He needs a lot of sleep, can't get enough sleep really. He has a good long sleep every night and usually a long nap in the afternoon. If he doesn't sleep well at night, or if he can't have his nap in the afternoon, he can really feel it later in the day. But as the tiredness is going away a little bit more every day, he is enjoying life a little more. This week we not only cleaned our house together for the first time in a long time but we also went out for 20-minute walks every day. Yesterday evening he was for the first time in a long time able to sit downstairs in the living-room reading a book without falling asleep.

Paul is on 10 mg Prednisolone and 10 mg Lexapro daily. And he is taking Maxolon or Valoid (anti-nausea medication) as needed.

At the moment our focus is to build his system up again with healthy food, good long rests and a bit of exercise where possible.

Paul will have a bone scan and a CT scan next week. And we will have the meeting with Professor McDermott on 13 February.

I am nervous because of course we don't know how effective the treatment has been so far. According to the CT scan which was done when Paul had completed the second round, the mets were shrinking but not very much. So we can only hope that the treatment has continued to be effective. There is a lot of hope that it has continued to work and a lot of fear that it hasn't.

The other thing that makes me nervous is that I know Professor McDermott and his often blunt way of presenting his opinion. He is the doctor who said last year, "Well, Paul, you can try Chemotherapy. But what I would say to you is: is Chemotherapy even going to work?" So what I am afraid of is that he will say, "Well, the Carbo Platin has shrunk the tumors slightly, but your liver won't ever be free of mets again, so I don't think it is even worth continuing the therapy." From a medical point of view he may be right; but what we want is to get as much time as possible, even if the improvement is only tiny. We wouldn't say this if Paul had experienced severe side-effects, but he hasn't, and therefore we feel that it is worth continuing, and who knows, maybe the next time all the mets in the liver will go away. So I suppose my nervousness is because I am afraid of what he will say and how we will be able to stand up for what we want to do.

Then there is of course the high PSA level that makes me and us nervous. Professor McDermott believes that the cancer must be growing somewhere else in the body at the moment, somewhere in the bones, because the PSA level is so high even with the Chemotherapy. So we are hoping that, if the CT scan shows more growth in the bones, he will reconsider putting Paul on a combination of Docetaxol and Carbo Platin. But he was very reluctant to do this last year.

And I also have to admit that I am sometimes a little afraid that how the professor says things will change Paul's mind. If the treatment success wasn't great so far, and if he tells Paul that, and if Paul is in one of his occasionally occuring darker moods, it might really make him think again. I don't know at the moment how I would cope if he decided not to continue with the treatment. Of course it is ultimately up to him and I know that and fully respect that, but I sooo much hope that we will have reason to believe and both have the strength to believe that it is worth doing it again.

What do you all think?

Mel and Paul.

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2nd opinion at a center of excellence, with a team---that specializes in Prostate Cancer. That is what I think.

Nalakrats

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Hi Nalakrats.

I discussed this option with Paul before and he feels he is in good hands with Professor McDermott and Saint Luke's Hospital here in Dublin in general. And in fact I do agree; I just think the man is not very good with people.

Mel.

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As with most Doctors---they tend to be type B personalities--and there is no course on interpersonal skills in the world that can improve their personality structure. I have a Urologist--that after I see him as his last patient on a Friday--we go out for beers, and have a blast--and we do not talk about cancer--- an exception-----but most will be like McDermott.

Nalakrats

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I was a patient of Dr. Myers, since he has retired I am looking for a new cancer team to guide my treatment -- I have widespread bone mets -- and I am castrate resistant. Currently in the middle of Zofigo treatment, (finished a year of chemo (docetaxil) just a few months ago.) Any recommendations of where I should go for further treatment (a center of excellence in prostate cancer). Live in Florida, but can most anywhere. Appreciate any advice you may provide. best,

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Is there not a Mayo Clinic Cancer operation in Jacksonville Florida?

Nalakrats

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yes, just not sure of their capabilities for advanced prostate cancer. Will look into them. Thanks for the reply.

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I do not either, but I know we have members here or on another site I participate on going there----and both site are for those with Advanced Pca.

Nalakrats

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I think that Professor McDermott needs to be left alone in a room with nameless9999 while you guys find an oncologist who doesn't trade in a car because a tire went flat. Honestly is one thing. arrogance and negativity is another.

Of course what do I know?

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Hi Nameless9999.

Yes, that's true, there is a way of being honest without being too blunt or even hurtful.

Mel.

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Nalakrats advice seems very sound.

Regarding the liver, I read a post yesterday about proton therapy...perhaps that is an option?

Most importantly, though, please don’t lose hope. You and Paul clearly have a special, caring and loving relationship. It comes through in every post you make.

Our Lord never gives us more than we can handle. And I believe we are ultimately in His hands. My advice is to do everything you can to help Paul (research, second opinions, etc.), pray for strength, and enjoy every minute together. 😊

Our thoughts and prayers with with you both!

James

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Hi James.

Thank you for your post and your encouraging words.

It is interesting that you can see/feel/read our special bond through the posts I make on this forum. I totally agree with you in saying that. The disease has brought us even closer together. And we do enjoy every minute. So if after a break of two months or so Paul can go bac on the treatment that would be really great. It would give us more time.

Mel.

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Oh yes, James, and the Proton therapy sounds certainly very interesting. I am taking notes of everything I read or hear that might be an option after or in combination with Carbo.

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Please have hope.. and be cautious about the CT scan reading. UNM was reading my husbands scan as having 2 lesions on his liver as tumor... they did not seem to change much in size. We had a scan from 5 years ago and it has the same 2 lesions. They were not tumor.. yeah!

A second opinion is definitely a good idea. For our bone mets we did a round of Strontium and 5 chemo(bright blue) treatments. This was a much easier to handle chemo than the standard. This helped a lot with the bone mets and the smaller tumors elsewhere. There are lots of things to try still.

I wish I could reach out and give you a big hug! I know how scary it is. Please know that I am praying for you!

Softwaremom.

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Hi Softwaremom.

Thank you for your post.

What are the treatments you used for bone mets? Could you tell me a little bit more about them?

Mel.

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Sure.. We used Strontium.. which is a one dose thing given by Nuclear Medicine. and then we did a very low dose chemo of Mitoxantrone... immediately after the Strontium.. The idea of the low dose chemo is to use it as a radio-sensitizer. The primary use of Mitoxantrone is as a regular chemo but our oncologist got creative and gave it as a small does and it really did seem to help. We did the Mitoxantrone for 6 weeks.(once a week) If the whites were too low we skipped the week. We ended up getting 5 out of the 6. I think taking the RealBuild really helped to keep my husbands white blood cell count up.

My husband is also on the standard Lupron and Zytiga, prednisone treatment.. I am guessing most of the guys here are taking that.

I hope this helps. I know this treatment helped my husband a lot and it was very tolerable.

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Hi Softwaremom.

Thank you for explaining this to me. I hadn't heard of anyone doing this before.

I have made a note of it and will say it to Prof McDermott when we meet.

Obviously in my husband's case the most important area to treat is the liver because of all the liver mets, but the treatment you are talking about may do a good job on those as well as on the bones.

Thanks again,

Mel.

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I'm newish to the group. I was diagnosed in September and am on Lupron while I seek a second opinion on surgery. The first doc was dreary and not very respectful.

Please take my comments below as a newbie. Wiser members, please keep me on the straight and narrow.

A second opinion never hurts. You stated your case perfectly in paragraph 7 if it comes to that. I'd use something like it to communicate with him but really, I'd also seek a second opinion and try to release yourself from expectations. I know the fear itself and the waiting are terrible. I find walks in nature, quiet walks and any form of meditation that works for you.

Good luck and peace to you. We are all pulling for each other in our own way and I am pulling for you.

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Well put EricE !

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Hi EricE.

Yes, walks and meditation are something we do to stay calm. And they really do help.

If it was me, I would immediately go for a second and even third opinion. It is interesting to me that Paul never wants to do that. He feels he is in good hands and when I ask him what gives him reason to believe this is that "they kept me alive for 15 years already".

Well, as I said before, I don't doubt that we are in good hands. But I want to make sure that he will continue Paul's therapy or even try new approaches. I don't feel we have come to the end of the journey, and I want to make sure the professor and we are on the same page here.

Mel.

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Mel, All good comments here , I do not have anything to add, but please know that You and Paul will be in my prayers for a good scan result , and a good meeting with the DR. I will be doing the same next week, I wish you the best.

Dan

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Keeping you in my thoughts and prayers for all good next week Dan.

😊 Jackie

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Thank You Jackie :)

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Hi Dan59.

Thank you so much for your post.

We wish you good luck for next week! Please keep us posted about your scan results. We hope they will be really good!

Mel.

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Oh Mel......We all feel your fear, your worry, your love in your words. My tears for your pain. My arms around you.

Maybe write and slip doc a note "edited" similar to this and ask nurse to have him read it before you go in. He will feel what your hearts need and want and possibly tame his bluntness and reach down in his own soul and try harder......

I'm so glad to hear that Paul is feeling well and able to do things with you with enjoyment.

Sending love, prayers, good wishes, warmth and gentle hugs,

Jackie

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Hi Jackie.

Thank you so much for all your warm words.

Yes, Jackie, I thought about slipping the doctor a little note. I might do that.

Love and hugs

Mel.

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Mel-

When my wife was going through breast cancer treatment I used to always make an ‘excuse’ to leave the examination room so I could find the doctor in the hall. I would tell him how my wife was REALLY doing before he saw her. She was reluctant to tell him everything. These little chats really seemed to help focus our conversation. Perhaps this approach can help.

Never thought 10-years later the same oncologist would diagnose and treat me... he’s an amazing guy. He cured my wife and mother-in-law. We joke today we get the group discount.

Our best to you and Paul!

James

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Hi James.

I can really understand why you did what you did and that it helped in the conversations with your doctor and your wife.

I think I will either write a short email to him or talk to him briefly on the day. I want him to be aware that Paul is very sensitive and that it is therefore very important how he says things. After McDermott's remarks last summer, Paul found it hard to forget them and sometimes asked me, "Do you think now that this is going to work because McDermott said it mightn't..." and I finally convinced him that, regardless of what MCDermott had said during that meeting, we would do the treatment and see; and it did help. So I might ask him to refrain from any discouraging remarks without, of course, being untruthful.

Mel.

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How is lexipro working out for him and you ? I think that without a strong will to live and to fight it’s difficult to survive any harsh cancer treatments. Hope he wants to keep on. Boy this is a difficult citation for you.. Stay strong...

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Hi Lulu700.

Thank you so much for your post.

Lexapro is working well for Paul. He has been on it for years.

Yes, I can see how much Paul wants to live and stay here with me. I think and hope that the doctor will be able to sense that too.

Mel.

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You are his reason ..That is good news. Another chapter to write for the both of you. And not without lamentations unfortunately. A cancer center psychiatrist asked me at the end of our meeting.Do you have a reason to live and what is it. ? My wife was and still is my answer ,life and love. The dr said calonapin for two weeks then lexipro for a month before he would even talk to me. He wouldn’t see me unless I drugged up first.He said it wouldn’t work. I was a ragin cajin verbally abusing my angel ( the only one there for me) . My wife didn’t want me to do any more pharma so I didn’t. I think it’s as simple as I’m finally adjusting to being slammed by modern medicine, then under their thumb trying to survive with No male hormones for two yrs..... I’m for all of us who are doing well with treatments . My prayers to the both of you..and everyone else that is suffering . God bless you !

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Hi Lulu77.

I think we all need a reason to live for. And we are very lucyk when we can say "my wife", "my husband", "love".

I absolutely hate it when people say, "No, no! The reason has to be yourself!" Because we are social beings. And the whether we want to live depends so much on our relationship with those closest to us.

So, yes, I am happy to be his reason....

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We all must love ourself before we can really love others. That’s true I believe. When I was depressed I’m hated my self. I’d wake up,and Grimiss in the mirror with a scowl on my face, I was frustrated and angry at myself for messing not just my own chemistry up but my wife’s life plan for the future. Our golden years. Accepting things rather than tormenting every one is the way to go. Living for self interest is a hollow existence. Love is all that matters in life. We have that . Pray for those that are all alone in there struggles. May they recieve love.

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What's the difference between God and a brain surgeon?

Answer: God doesn't think he's a brain surgeon....

Good Luck and Good Health especially to Paul and Mel.

j-o-h-n Saturday 01/27/2018 2:39 PM EST

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J-o-h-n, thank you so much! :-)

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My prayers to both of you. however. don't walk but run from this guy. There are many compassionate and caring physicians out there that I dont think you need this treatment. My oncologist team is very, very, compassionate and knowledgeable. I always walk out of sn appointment in great spirits knowing that they will do their best. After that as the doc once told me "it's in God's hands".

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Hi JRB12.

No, we won't run from the guy. Only because he doesn't have the best people skills he is not a bad doctor. In fact, I do believe he is one of the very good ones. And Saint Luke's Hospital here in Dublin is a wonderful hospital where the staff is very caring and compassionate.

Thank you for your good wishes.

Mel.

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Hi everyone.

I would like to thank everyone for their posts and comments.

Being in contact with all of you on this site helps so much, it even helps to ease the nervousness. Just talking and hear your opinions/advice/ideas is so good.

How tense Paul and I are showed itself yesterday when we came back to our house after a 25-minute walk and Paul was about to prepare lunch when he suddenly had to leave the kitchen, didn't even make it to the bathroom in time and was retching outside the house behind a bush for a few minutes. Not much came out but a little. It reminded us so much of both his first weeks on the Chemo but also the weeks before that when he was quite symptomatic. What I mean is: We weren't just able to say, "Ah well, it was maybe to hot or he was very tired or whatever and this is why it happened", but we immediately thought "Oh dear, is the cancer growing again?" So I guess the sooner we get this scan and its results the better. Although maybe it is also blissful not to know... Anyway, I realized later that I had forgotten to give Paul his anti-sickness medication in the morning, so maybe that triggered it...

Mel.

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