Our Appointment With The Professor Today - Advanced Prostate...

Advanced Prostate Cancer

21,020 members26,201 posts

Our Appointment With The Professor Today

MelaniePaul profile image
24 Replies

Hi everyone.

We are just back from the hospital and very, very tired. But I thought I would send you an update after the appointment with the professor today.

So Paul's CT and bone scan are exactly the same as the last time. That means that the disease is stable. The mets haven't shrunk but they haven't grown either. When the professor told us, we both felt a mixture of relieved and disappointed; relieved that the cancer hasn't grown and disappointed that it hasn't reduced. The professor wants to continue with Chemotherapy as soon as possible. He wants to do four more rounds of Carbo Platin and then do another scan to see if the tumors have shrunk.

Paul asked him if he had thought that the outcome would be different. And he said - and I really appreciate his honesty there - that he hadn't thought it would be different because of the extent of the illness.

So I guess all we can do is control the disease as much as possible with Chemotherapy. We can only do Chemotherapy as long as Paul wants to do it and his body can take it. If we don't continue it or decide at some point in the future against continuation, from what we know it is likely that that wouldn't work very long...

What do you all think about the result?

Mel and Paul.

Written by
MelaniePaul profile image
MelaniePaul
To view profiles and participate in discussions please or .
Read more about...
24 Replies
Kamilekamile profile image
Kamilekamile

Wishing you good luck🙏

MelaniePaul profile image
MelaniePaul in reply to Kamilekamile

Kamilekamile, thank you.

Sorry to hear that the metastasis did not change for the better.

If the cancer is PSMA positive stil can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease.

There are at least 3 clinical trials going on int eh USA for castration resistant metastatic prostate cancer.

Please search at:

Clinicaltrials.gov for prostate cancer and Lutetium 177

The first things is to determine if the mestastasis are PSMA positive.

A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA got Ga 68 PSMA PET/CT:

Please search at:

Clinicaltrials.gov for prostate cancer and Gallium 69

My treatment with Lu 177 was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.

The treatment can kill cancer cells castration resistant and hormone sensitive in the bones or in soft tissues. Very well scientifically documented treatment.

Anything please let me know.

Best wishes and lots of luck

Raul

MelaniePaul profile image
MelaniePaul in reply to

Hi Raul.

Thank you for your post.

We did think a lot about this treatment. However, our oncologist is of the opinion that Paul's cancer would not respond very wll to this treatment because the tumors are poorely differentiated. I trust him. I don't really think that there is something out there at the moment that is better than the Carbo Platin treatment. Also, going for this treatment would be very, very costly and stressful because neither the PET scan nor the treatment itself are available here in Ireland.

Mel.

It's good news that you are holding back the cancer from progressing. Of course we all want to see the cancer reduced, but keeping it from progressing is the next best thing. I hope Paul can tolerate continuing chemo if necessary.

Is everything O.K. with his liver? I know the Carboplatin chemotherapy was effective with his liver so hopefully it will continue to benefit him.

Wish for continued success with Paul's treatment, thanks for the update.

MelaniePaul profile image
MelaniePaul in reply to

Hi Gregg57.

Yes, exactly. We would have loved to see the cancer reduced, but it being stable is the next best thing.

Paul's liver mets are still there but the bloods are okay, so the liver seems to be okay. Paul is feeling good, just often very tired, but that can be expected I think after the Chemo he has already been through and the stress of the last couple of weeks of waiting.

I really think the thing is to continue with Chemo until either his body can't take it anymore or he decides that he no longer wants treatment.

Mel.

JamesAtlanta profile image
JamesAtlanta

Great advice from earlier posts. Just wanted you to know our thoughts and prayers are with you both!

James

MelaniePaul profile image
MelaniePaul in reply to JamesAtlanta

James, thank you.

Scruffybut1 profile image
Scruffybut1

How is Paul's liver? If he and his results are stable that's great news for both of you. You have obviously developed confidence in your Oncologist and I would follow his advice. God Bless

David

MelaniePaul profile image
MelaniePaul in reply to Scruffybut1

David. Paul's liver is okay, even though all the mets seem to be still there. His bloods are okay too, just the HB is a little on the low side with only 10. He is stable otherwise as well. So we are ready to do more Chemo.

Mel.

Chiquis profile image
Chiquis

I'll be praying that you both have the strength and the peace to get you through all this.

Sincerely,

Erika.

MelaniePaul profile image
MelaniePaul in reply to Chiquis

Erika, thank you.

Dan59 profile image
Dan59

I say stable is always good ! Mine are growing now, but stable for so long. Also I am starting cabitaxel thursday, and will do it as long as it works and I can handle it, after that I will retry my xtandi/zytiga , hoping for a reversal of resistance due to Chemo, and metformin,and see if I can get the MO to allow me to do oral cytozan chemo pills as per a report by Glode, et al . I am a little worried, because I will be doing nuelasta, and the stories of bone pain with this, I did buy plenty of claritan , as I had read that may help.

I wish you and Paul the best always, we are all in this together.

Dan

MelaniePaul profile image
MelaniePaul in reply to Dan59

Hi Dan.

I am sorry to hear that your mets are growing. And I wish you success with the cabitaxel. Isn't that Chemo only for bone mets?

I asked our oncologist yesterday if he thought that Paul could become sensitive to Zytiga again. He said no. I think what he was trying to say to us was that this treatment is really the only way to keep the cancer from progressing in the liver. And he seemed even surprised about that. So I think we have to remind ourselves of how lucky we are that we got this far with the treatment for now. Hopefully Paul can remain stable for a long time or maybe the mets will shrink now. Strange how they didn't reduce under this intense treatment...

Good luck again with your treatment.

Mel and Paul.

in reply to MelaniePaul

I agree with your doctor that the Carboplatin is keeping the liver mets from progressing. Often the cancer that goes to the organs and soft tissue is different from the type that goes to the bone. But the bone mets are not progressing, so that's a positive. Hope the treatment continues to work.

paulofaus profile image
paulofaus

Stable is good, best of luck.

MelaniePaul profile image
MelaniePaul in reply to paulofaus

Thank you.

Try it again , sad to think of eternal chemo as the only option for survival .I hope this next round shows better results.

MelaniePaul profile image
MelaniePaul

Thank you so much everyone for your posts.

Of course we would have loved to see the metastases reduced. But the disease being stable is the next best thing. So the thing now is to see the positive and not to think to far ahead into the future. For now the cancer is stable and that is good.

And who knows? Maybe the next four rounds of Carbo Platin will help reduce the mets; and, if not, then at least continue to stop the cancer from growing.

vandy69 profile image
vandy69

Good Morning MelaniePaul,

From previous posts between us, Paul and I are very similar (please see bio for treatment history). I am currently on a break from chemo, with last of 6 cycles of Docetaxel/Carboplatin on 1/9.

Like Paul, my 3rd liver MRI showed stable but much improved from before chemo. My future looks like more chemo, but maybe different chemo drugs.

Having a colonoscopy tomorrow to determine cause of internal bleeding. It's always something!

Best wishes. Never Give In.

Mark, Atlanta

j-o-h-n profile image
j-o-h-n

to MelaniePaul

Keep Plugging.

Good Luck and Good Health.

Wednesday 02/14/2018 2:18 PM EST

(Valentine's day, don't forget the chocolate)

erjlg3 profile image
erjlg3

Good wishes moving forward Mel and Paul. Stable is good. Perhaps next round will start shrinking them.

Jackie

Daddysdaughter profile image
Daddysdaughter

Does Paul have NEPC? Is that why he is on a platinum chemo agent?

Daddyishealing profile image
Daddyishealing

I just asked the same about my dad so see my last post , no progression, the cancer they feel is stable and they are holding off on other treatments. My dad could t go past the required chemo time as he started to retain water aeverywhere and was gaining a lot of water weight each day and nothing helped but time. Noone is an actual fan of chemo,but I'm glad his body can handle it. Someone recently asked about supplements that can be taken while doing chemo and I posted that as well. Perhaps some can do more chemo alternative therapy could also protect all the organs. Believe me I know the news of no regression no progression is bittersweet and I'm here if you need to cry ,stomp,. Or shout. Pm me anytime.

You may also like...

Our Appointment With Paul's Oncologist

treatment done. How would we be able to do that at such short notice? Anyway, Paul's PSA has gone...

Our Situation Feels Difficult But Manageable

it will be two weeks exactly since Paul had his first Carbo Platin infusion. The first week was...

Paul is coming home today

radiation on his liver just for now maybe, but they said that it wasn't possible because his tumors...

Preparing for our journey's end

probably want to know, when our journey will end. We will continue to fight as long as possible....

Husband Starting Carbo Platin Tomorrow

Hi everyone. So tomorrow Paul will have his first infusion of Carbo Platin. We have mixed feelings...