Denied for Vision Trial

[Muzpapa]

My husband was diagnosed Stage 4 Prostate Cancer with Gleason score 9 last summer.

After Lupron, Zytiga and Chemo (Docetaxcel) all failed on him, we are hoping he could get in the Vision Trial. However, due to the low hemoglobin counts he was denied for the Vision Trial.

His hemoglobin counts started go down with the Chemo. Also at beginning of September, he went to ER and hospitalized three days with excessive heart beats. At that time his hemoglobin count was 6. He had blood transfusions and then, following week he had a shot to increase hemoglobin. It went up to 8.2 so we are all hopeful his hemoglobin counts will go up if we wait a few weeks. However, instead of the hemoglobin counts increase, it went down to 7.2.

While we were waiting for all the tests, his PSA went up to 530.62 so the doctor prescribed him Xtandi (enzalutamide) . It seems like he has more energy now. But I'm really scared how long it will last.....

Will you please let me know what option will we have after Xtandi fail on him? We will meet with his Oncologist on 10/17 so I would like to educate myself as much as possible. So any suggestion is greatly appreciated.

*** I guess we should be thankful that my husband does not have any major side effects with all these medications so far. ***

[Fairwind]

The "Vision" trial stopped accepting new participants about a month ago.. If most of his mets are confined to his bones, you might look into Radium 223 also called Xofigo. Works similar to the Lu-177 compound that the Vision trial uses..For me, a different taxane chemo , Cabazitaxel or Jevtana worked better with fewer side-effects than the Dosetaxel. When the Xtandi stops working, switching to Zytiga is worth a try.. Best of luck to you...

[Muzpapa in reply to Fairwind]

Thank you very much. His cancer is in lymphoid also. .. but I'll ask his oncologist about Radium 223 next time. He tried Zytiga in Spring but unfortunately it already failed him after a few months.

[ctarleton]

I realize that you may be in the Kaiser system where you live in the Pacific Northwest, but you and/or your local oncologist might try to seek expedited "next option(s)" treatment advice directly from Dr. Tomasz M. Beer at OHSU in Portland, OR. Helpful links and info are here:

ohsu.edu/providers/tomasz-m...

Charles

[Muzpapa in reply to ctarleton]

Yes, we are in the Kaiser system. The Vision trial was with Dr. Vuky at OHSU. She really gave my husband a chance to be included in the Vision trial but unfortunately his hemoglobin got worse instead of got better.

But through this effort (to be included in Vision trial), we went back to OHSU (we used to go there before we belong to Kaiser) and we are pretty impressed with the Knight Cancer Institute. Since it's open market for health insurance, I'm thinking about changing my husband's insurance to Blueshield/Bluecross so that he will be able to go to OHSU.

Thank you so much for introducing Dr. Beer. I just checked his website and am happy to find out he is taking new patient. So I sent mail to Dr. Vuky to refer my husband to him. Hopefully, we will be able to get an appointment soon.

[joekaty]

We are very much in the same position- but my husband has been diagnosed a little over two years- and he recently tried Provenge- way late. And just before that had done another 2 rounds of taxotere (also in an attempt to get into VISION). His PSA is doubling every 2 weeks now. He wants to do an awful trial in St Louis. Please update if you find any promising options. I feel like we are out.

[Muzpapa in reply to joekaty]

Hi Thank you so much for your comment. I have never heard of Provenge, though I've heard about the immunotherapy. I'll ask my husband's oncologist when we'll see him in a couple of weeks.

I guess one promising option is LU-177 in Australia (or Germany). But even though we live in west coast, still it will take us 19-25 hours to get there. To make these trips every 8 weeks (at least three times) sounds really hard physically & financially....

By the way, if you don't mind will you tell me what is "an awful trial in St. Louis?"

[Shanti1 in reply to Muzpapa]

Hi Muzpapa- I don't know if this would be an option for you, but we started investigating Lu-177 treatment in Homberg Germany and a furnished apartment rental was between 600-1500/month on Airbnb. If we go we will likely just stay in Germany for the duration of the cycles. We haven't looked into the transportation system over there, but I believe public transportation is good. Maybe they have Uber.

Best, Shanti

[Muzpapa in reply to Shanti1]

So you are going to stay there at least 6 months? (I was told one cool is 3 infusions, 8 weeks apart. ) That could be an option if their country allows us to do that. It should be much easier for my husband physically. Also, Germany should be easier for us to take our baby (chihuahua) with us than Australia.

Thank you.

[Shanti1 in reply to Muzpapa]

Thank you for asking that very important question about visa stay time. I just looked into it and you are allowed to stay for 90 days in a 180 day period on a tourist visa. If you need to stay longer for medical treatment, you have to apply for a medical visa before you go, which takes some doing, but isn't impossible: germany-visa.org/medical-tr.... We would want to stay there for the duration of the treatment if possible.

[Godblessus in reply to Shanti1]

I highly recommend Homburg... take a train from Frankfurt airport taxi to hotel... if you need. Some help let me know

[Shanti1 in reply to Godblessus]

I imagine the hotel is next to the treatment center? Did you use public transportation to get around Homburg itself? And if so was it difficult or convenient? Thank you!

[RyderLake2 in reply to Shanti1]

Hi Shanti,

Peter here. I apologize for the delay in writing. The Hotel Stadt Homburg is about 800 meters to the Nuklear Medizin Klinikum at UKS. If your husband is unable to walk that far, there is a bus that makes the loop around the hospital complex and there are, of course, taxis. The walk is relatively easy (although it is uphill). The hotel is not five star by any means but it does offer a full buffet breakfast for 4.9 Euros. The hotel also has a good dinner menu. The cheapest place to get a lunch is in the hospital cafeteria. There are three. The closest one is in the Center for Internal Medicine the big complex adjacent to the Nuklear Medizin Klinikum. I am quite willing to answer any other questions you might have about Homburg. Good luck!

[dadzone43]

It is your oncologist -- not we -- who should let you know options. Hope you will share what s/he said. At the MaleCare conference in New York yesterday ALL the presenters were women! Surgeons, radiologists, oncologists, researchers.

[Muzpapa in reply to dadzone43]

True, but at the same time, if we study the subject before we see him, we could make better decisions with the oncologist suggestions. After all, we need to listen to him and then make the final decisions. We are planning to listen to what my husband's oncologist presents and then get second opinion with the OHSU doctor ctarleton suggested.

[ctarleton in reply to Muzpapa]

As you continue to explore some of the options for Advanced Prostate Cancer before and during upcoming consultations with your local oncologists, you might also find lots of related info in some of these videos from a 2019 Prostate Patient Conference at UCSF. (Dr. Eric Small at UCSF is a counterpart of Dr. Beer at OHSU, and their teams are part of what's been called The West Coast Dream Team for prostate cancer research.)

Here's a link to those UCSF Patient Conference videos. Note the one on "Systemic Therapies for the Treatment of Advanced Prostate Cancer". Several of the other videos are quite good, too.

uctv.tv/search/?keyword=201...

"A little here and a little there...."

Good Luck!

Charles

[Muzpapa in reply to ctarleton]

Hi Charles,

Thank you so much for the info and I'm so sorry I couldn't thank you sooner. We were out of state on business and just came home.

Also, thank you again for introducing us Dr. Beer at OHSU. We are very excited that my husband got an appointment with Dr. Beer next week. (Originally the first appointment was late November or early December.)

We do have an appointment with regular oncologist this week also. So it's easier for my husband to decide which doctor he want to choose. And luckily it's time of the year that we can change our insurance. So, great timing.

Can't thank you more!! Paula

[dogstar1]

You are quite right about the grueling trip to Germany -- though Australia may be closer for you on the West Coast (we are on the East Coast). Just the travel took a lot out of my husband. Also, they may not agree to treat your husband if he is not a good candidate. The folks in these places have enough experience to know when the treatment is (or is not) likely to be beneficial. Pay close attention to their advice; I wish we had. But you could always start the process; that doesn't mean you have to follow through, but it is a way to get a second opinion -- though just assembling all the documentation is time consuming on its own <grin>. Also, your husband will need a PSMA test first.

And, yes, it is hard financially as well!

[Muzpapa]

Thank you dogstar1. I thought Australia is closer to us also but actually, Germany is closer. lol (Or may be its due to the flight connection) . I started talking to a doctor who performs LU-177 treatment in Australia a little while ago. At that time, my husband's oncologist suggested to do the available treatment here in US first. So he did Chemo. I'll ask both doctors and a new doctor at OHSU again what is the best option for my husband.

My wishful thinking is my husband could use available treatments here in US while waiting for FDA approves LU-177.

I asked a research coordinator at OHSA about the PSMA test. She said it will cost us $5,000. I was told it will be only $1,000 in Australia. Sigh

[AlanMeyer]

Dear Muzpapa

At this point, the options have narrowed a lot. Your husband may benefit from cabazitaxel (trade name is Jevtana) as Fairwind has. Fairwind also suggested switching to Zytiga when the Xtandi fails. Even though your husband had Zytiga before and it stopped working, it sometimes happens that drugs that failed a while ago start to work again. The cancer is always changing and the tumor cells that were resistant to Zytiga before may have further mutated under the influence of the withdrawal of Zytiga and the addition of other treatments and become sensitive again. That can also be true for chemotherapy and even for the older drugs Lupron and/or bicalutamide (trade name Casodex.)

Xofigo is an injectible radiation treatment (as is Lu-177-PSMA), but it only targets cancer in bones. It can be useful in reducing bone pain but will only extend life if the cancer in the bones has become life threatening. Cancer in the "soft tissue" - lungs, brain, liver, etc. is not treated by Xofigo and is a common cause of death in prostate cancer.

Here is a list of 288 clinical trials identified by the National Cancer Institute for prostate cancer treatment: cancer.gov/about-cancer/tre... Most trials of brand new treatments don't work, or work only a little, but when nothing else is available, and/or if they target something that looks promising for your husband's particular cancer characteristics, they can be worth trying. It's a lot of work going through them and identifying any that might be of value to you. If you can get help with that it can be very useful. Your oncologist may (or may not) have been following prostate cancer clinical trials and may be able to suggest trials that he thinks are worth trying - if any.

I think that, at this stage in the disease, it can be useful to keep your eyes open for new ideas in treatment, but also understand that trying new treatments that don't look particularly hopeful involves work, travel, money, and lots of time spent during a period when the amount of time available is growing short. If you plan for it, you can make the remaining time happier and less painful. Make sure all of the financial affairs are in order. Have a look at the hospice facilities and services in your area and get local recommendations. Perhaps bring the family together and plan for times with friends and family. Think about how your husband would most like to spend the time he has left.

We all wish you, your husband, and the family the best.

Alan

[Muzpapa in reply to AlanMeyer]

Hi Alan,

Thank you so much for your comments. I really appreciate them very much. But sorry, I couldn't thank you sooner. We were out of town and the place we stayed had terrible internet connections. So I couldn't do much.

There's a ton of info I haven't heard so it's a little overwhelming but at the same time, I will be a little more prepared to ask questions when we see my husband's oncologists. (Regular oncologist this week and Dr. Beer @ OHSU)

Thank you again,

Paula