What’s next? Hearing different approa... - Advanced Prostate...

Advanced Prostate Cancer

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What’s next? Hearing different approaches from different people.

Pinks124 profile image
26 Replies

Dad had his orchiectomy 6 months ago. He lives in India. He was diagnosed with PSA of 64, bone Mets (stage 4) and Gleason 9. He was put on casodex and zolendronic acid (bone medicine). His 3 months check up after orchiectomy was 18, so he continued with the current plan. On His 6 months check up, the PSA has gone up to 58. The Oncologist has asked us to start Honcan which is fisfesterol. He is saying zytiga will be given once these medicines stop working. Dad is complaining about back pain now when he sleeps. The Dr is suggestion radiation. We did another PSA check after 6 months check (-2 days after) and the PSA has gone up to 75. Today we changed the medicine to Fosfesteral.

I have been researching. It seems like usually zytiga or chemo or both are given. I didn’t see any reference to fisfetrol in the forums. What would you suggest?

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Pinks124 profile image
Pinks124
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whatsinaname profile image
whatsinaname

Your dad should have a 68 Gallium PSMA PET-CT scan done immediately (it costs 25K approx in India) to determine the extent of mets (area, sizes, qty).

Once this is done, the next treatment course can be decided. Probably, chemo (docetaxel) if the mets are many and spread throughout the body (like mine). It will also depend on whether your dad can tolerate chemo (I did, but I am 62.5 yrs and reasonably healthy).

Yes, Zytiga (Abiraterone) is also likely to be prescribed. Where about in India is your dad based ??

Schwah profile image
Schwah in reply to whatsinaname

$25,000?? Is that a typo??

Schwah

whatsinaname profile image
whatsinaname in reply to Schwah

Not US$ but Indian Rupees :-) Pinks124 dad is in India, so I quoted in our currency, the bloody weak Rupee :-(

Cheers, Schwah.

GP24 profile image
GP24 in reply to Schwah

25.000,00 INR = 356,95 USD

Pinks124 profile image
Pinks124 in reply to whatsinaname

Dad is 65. He had done the scan while he was diagnosed. Does he need to do it again right now? If needed we can do that.

whatsinaname profile image
whatsinaname in reply to Pinks124

If the test was done recently and his PSA has not increased much since, then no point in doing the test again. If, however, his PSA has shot up a lot, then do the scan again to find out whether the mets have increased in size & qty. Also, you will know their exact location.

Pinks124 profile image
Pinks124 in reply to whatsinaname

My dad is in Odisha. I live in US. So I hear different protocols being followed in USA vs India? I would think the direction would be the same. Atleast the current Oncologist is keeping the zytiga as 4th option in the line of treatment. Chemo is after that. Right now, he is just planning to switch honvan (estrogen related medicine I believe) and radiation if bone pain continues. He may do pet scan before that. That’s what I gather from my sister, who herself is a doctor. I am just wondering if that is okay to follow the Oncologist (he is a pretty good onco doctor in cuttck/Bhubaneswar). Seems like he has his own hospital and group of doctors.

whatsinaname profile image
whatsinaname in reply to Pinks124

I agree (though I am a novice myself) with radiation (if the oncologist thinks it will help). For sure, Zytiga along with Prednisone next for as long as his PSA stays low. Then, perhaps chemo (docetaxel). There are other treatments as well.

Yep, take a chance with this doctor. Besides, your doctor sister could also help out.

All the very best. There are plenty of others on this board far more knowledgeable than I am on this prostate cancer matter who will also help out.

GP24 profile image
GP24

The back pain is caused by the bone mets. This can be treated with radiation.

Tall_Allen profile image
Tall_Allen

Zytiga or docetaxel are proven to work - this estrogen pill is obviously not working for him. The radiation will help relieve the pain.

Pinks124 profile image
Pinks124

Thanks. He was re-tested in less than 2 weeks and his PSA went up from 58 to 74. I think the onco doctor wants to put him on this 2nd level meds and see if that helps control the PSA. They will check his PSA again in 2/3 weeks. And keep an eye on the pain for radiation. Hope is this Honvan to help with the Mets too I think.

Are there any supplements or diets that would be helpful for his case?

GP24 profile image
GP24

What your father is getting is Fosfestrol or Honvan. This is an oestrogen therapy and no longer used in the US or Europe. Zytiga or Docetaxel will work much better but are probably more expensive.

Pinks124 profile image
Pinks124

THanks. It’s expensive for sure, but we are fine with the cost. It’s the onco Dr he is suggesting to give it a try before zytiga or Chemo. His thought process is let’s exhaust these options before we give zytiga. He thinks if we can find some meds that can work for 4/5 years then zytiga will be added later. We do frequent checks to keep close eye on my dad. I think they will test him again in 2/3 weeks to see if that has any affect...

Pinks124 profile image
Pinks124

Dad is still complaining about back pain at night and now constipation too. My sister has given some medication for that. We will wait a day or two before we ring the onco Dr again.

How is the proton beam rafitation for back pain? Believe that is the one he may get.

GP24 profile image
GP24

I understand that your Dr. wants to gain some time trying different drugs. But after the orchiectomy the testosterone is as low as it can get. For me it makes no sense to try to lower testosterone with Fosfestrol now. You need to reduce the testosterone production in the adrenal gland (and some PCa cells) and that will be done with Zytiga.

Alternatives are Chemo or the Lu177 therapy suggested by Whatsinaname. Since your father became resistent in just six months, which indicates a very aggressive PCa, I suggest the Lu177 therapy. Then you do not need the separate radiation your Dr. suggested.

Pinks124 profile image
Pinks124

Thanks so much. That’s a good feedback. I think the wants to watch one more month or so to see if any changes to y dad’s PSA. My sister did an US before his last check up and they did notice prostrate was swollen. They thought may be an infection is causing the PSA to go up? So I believe will do another PSA check in 2 weeks or so. Today he was feeling little better as far as the constipation goes. Back pain was ok too. I will further update on him. Also, we need to see where in India he can get lu 177 treatment. I wish he was here in USA. I had been thinking of bringing him for a 2nd opinion but he is not willing to travel with his current health.

He is also doing dietary changes. No dairy and meat. Eating lot if vegetables. He complains about feeling weak. I wonder if that’s from hermone therapy?

I thank you all for providibg your time and guidance. I truly appreciate it.

GP24 profile image
GP24 in reply to Pinks124

Getting the Lu177 treatment in the US is difficult! Whatsinaname got it done in Bombay, which is much easier and probably cheaper. You could chat with him to get details.

Yes, hormone therapy can cause fatigue. I am sorry, but exercise would help.

The prostate could be swollen because the cancer grows. It does if the PSA value goes up.

whatsinaname profile image
whatsinaname in reply to Pinks124

If your father is based in Odisha, the closest centre for Lu-177 would probably be Bangalore. Otherwise, my city, Bombay.

As GP24 says, it is cheaper and more convenient than going to Bad Berka, Germany.

The treatment is good and the nursing staff humane and caring.

Pinks124 profile image
Pinks124 in reply to whatsinaname

Which hospital in Bombay provide this? Any specific doctor would you refer there? Thank you for your response. 🙏🏻

whatsinaname profile image
whatsinaname in reply to Pinks124

See my message to you below this in the same thread.

Pinks124 profile image
Pinks124

Thanks again. We could go to Bombay if needed. I am hoping if my sister and her husband will know someone there. Or may be the current onco doctor may know. He is pretty good oncologist in Orissa. He does a great job in chemo. My grandma had colon cancer and he treated her and a few more in the family. Grandma is cancer free today (10 years).

Do you know which hospital or doctor in Bombay? I will reach out to whatsinaname sometime today.

whatsinaname profile image
whatsinaname in reply to Pinks124

I just saw this post of yours. Jaslok Hospital in South Bombay. Dr. Vikram Lele is the doctor in charge. Need any further details, please ping me. Or post here.

Btw, I have not changed my diet even a bit. I continue to pig out on all types of meat, dairy products and sea food/fish. As far as exercise is concerned, I walk a bit, do a bit of meditation and a bit of yoga. And, strictly no praying to any deity. Cheers !!

Pinks124 profile image
Pinks124 in reply to whatsinaname

I just read your 2nd post. Thank you. That’s funny that you are not praying to any of our 33 million gods. 😇 ..I am glad you are feeling better. Does CDB oil ever help with MPCa? My dad said it’s illigal in India but I heard good things about it.

I will let my sister know about the doctor. Thank you.

Update on my Dad- he is still complaining about his back. PSA check will be done in next 2/3 weeks. Possibly radiation would be next for bone Mets. Oncologist didn’t mention lu177, will bring it up next time.

whatsinaname profile image
whatsinaname in reply to Pinks124

Replying to your queries : 1) I have had very little to no pain (touch wood) thus far and therefore did not have to use CDB oil. I think it would be illegal in India. People have written about in on this forum. Do a search. 2) Lu-177 is not yet SOC (standard of care) in India and therefore most doctors do not recommend it or even know about it. But, I really think it could help me. I have just completed my first treatment and will keep the forum posted as to how my treatment played out. I think your Dad is in a lot of pain and while radiation might help, it also has side effects, please note.

All the very best to you and your Dad. Cheers !!

Pinks124 profile image
Pinks124

Thank you. I wish you the best with your treatment plan. I will update further on my dad as well. With honvan, he told me his feet are swollen and still have back pain when he lays down. They are going to talk to the oncologist on 18th to review and decide. We did a PSA check 10 days after taking honvan and it went down a bit (79.9– to - 79.6).

Pinks124 profile image
Pinks124

Here is update on my dad again. He is on Honvan as I mentioned before. His back pain is getting worst. Now even if he coughs, it's painful for him. His feet are swollen with rashes. They are going to talk to Oncologist about radiation. What else can be done to bring his pain down? We were kind of waiting for a few days to see if Honvan works to bring the PSA down and may be the back pain will go down along with the feet swelling. Its been 4 weeks he started Honvan. His psa went down from 79.6 to 49 in about 2 weeks of taking Honvan.

This doctor is prescribing medicine by medicine to see what works. He has not prescribed zytiga as yet. He says that's 4th one in the line and we are given 2nd line of treatment with Honvan. What can we do to help him with his back pain and swollen feet?

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