Have I really reached the last hitchi... - Advanced Prostate...

Advanced Prostate Cancer

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Have I really reached the last hitching post. Its truly surreal.

Costarica1961 profile image
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At the risk of being mellow dramatic, I have recently been disqualified from a clinical trial bombesin) due to lack of expression on the Psma pet scan, prior to this brief attempt at a novel clinical trial I was on my 6th round of carboplatin and cabataxal, my M.o informed me of a couple more trials out of state and expressed her deep concern of a 7th session of chemo, she indicated a serious concern that I may not tolerate a 7th round of chemo and it could be life threatening, although my labs are all in a normal range, with the exception of borderline anemia at 8.9 now 9.4 on its own. I was surprised and dismayed that she felt my only options were a couple of out of state trials, I asked about radium. 223 and she said that's a last resort with no life extension benefits, and then I suggested Lu 177 and she didn't seem to high on that as well. So I sat there thinking she's not offering me to much hope, are options. I am still physically pretty active and only 59 years old, psa was responding well to the chemo and there was no new progression of Mets. She also suggested possibly doing nothing and wait and watch, which seemed risky given my aggressive cancer historically, is this just eventually how the story ends, with a shrug of a m.os shoulders and a handout of a couple possible clinical trials that may or may not work. Has anybody out there have went beyond 6 sessions of the above mentioned chemo. Any suggestions or comments.

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Costarica1961
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GP24 profile image
GP24

You should stop after 6 cycles of chemo and observe the results. After some time you can repeat a chemo therapy, but this usually does not work as well as the first one.

I do not know how many mets there are, you may get these radiated if Lu 177 is not available.

Costarica1961 profile image
Costarica1961 in reply to GP24

Just completed my 7th chemo. When I spoke with the doc he said based on my labs and my side effects, should be my guide to the next step. Fortunately mine # looked very good, the concern is stopping treatment historically for me has led to extensive Mets and a high PSA currently their is no new met progression and psa has gone down over 200 points in 15 weeks to 34 from from 243. I am looking into lu 177 not sure how one qualifies or determines one is eligible. Thanks

GP24 profile image
GP24 in reply to Costarica1961

If you are castration-resistant and got a chemo, you are eligible for a Lu177 therapy.

I would get another opinion, it doesn't hurt. She's incorrect when she says that Radium 223 does not extend life. That's been proven in a clinical trial:

nejm.org/doi/full/10.1056/n...

Granted it's not a big extension, but it typically adds a few more months and of course can be more in some cases.

What specifically is she concerned about regarding chemotherapy? How are you tolerating it?

Costarica1961 profile image
Costarica1961 in reply to

She is concerned about the 7th session she claims the tolerance goes down dramatically. My numbers are very good except a couple weeks ago my borderline anemia, actually it has increased on its own prior to the blood transfusion now its in the 11s so I am not sure why she feels like I am walking off a cliff with n.o 7 although i do have a message into Dr beers, a nationally recognized prostate cancer doc, hopefully I can learn something new are beneficial.

Thankyou

MateoBeach profile image
MateoBeach in reply to Costarica1961

Dr Beers is very sharp. Get a referral for a video consult with him. His opinion will be valuable. Lu PSMA would be an option if you can afford and can travel. Dehli seems the most accessible and inexpensive. But get COVID vaccine before travel.

Costarica1961 profile image
Costarica1961 in reply to MateoBeach

I have a upcoming consult with Dr Beers, I have prepared a list of questions, at this stage it gets a bit confusing and less hopeful. I am a fighter and advocate for myself, although when I hear so much conflicting info it is supremely frustrating and scary. I rely on these medical folks to know more than me about my disease or what treatment is best at my specific stage, and sometimes it feels like I'm on a island with a volleyball staring back at me with a blank lifeless expression, Dr beers has always been on point with me, so I believe going forward I will exclusively go with him.😳

tom67inMA profile image
tom67inMA

I've recently heard of maintenance chemotherapy, in which chemotherapy can be continued indefinitely. I've attached a link below which discusses three different approaches to chemo:

1) Stop and go: This is what most people get, where you'd get a fixed number of cycles, stop chemo, and then wait for cancer progression before rechallenging with another round of chemo. In the link below, this appeared to produce the worst outcomes, but possibly the best quality of life.

2) Continuous: After a treatment phase, chemotherapy is continued but at a reduced, maintenance level. This could be eliminating one of the drugs in the cocktail, reducing the dose, or increasing the time between each cycle. This produces better results than stop and go, but quality of life is lower. I'm going to be discussing this with at my next appointment, as my oncologist and I both agree my cancer will come screaming back if chemo is stopped, and I'm not sure I like his apparent plan of continuing full strength chemo indefinitely. I've recently heard of people who have controlled their cancer for years with continuous chemotherapy.

3) Intermittent: This is similar to stop and go, but chemo is resumed at a pre-determined time point instead of waiting for progression. For example, you might get chemo for 18 weeks (6 cycles) go off for 18 weeks, and then get another 6 cycles regardless of whether the cancer has progressed. This was better than continuous, but in my particular case with a very fast growing NEPCa in my liver, I don't know if I'd survive taking that much time off.

One final note: I'm currently on folfiri which is normally used for colon cancer. My NEPCa tumors are shrinking and my bone metastases are stable (also on Lupron and Xgeva). This is out of the box thinking by my local oncologist, and the message is that there are almost always options.

In your case, one possibility could be continuing chemotherapy by dropping the carboplatin and continuing cabazitaxel on a four week cycle. All the "I'm not a doctor, this is just my personal opinion" disclaimers apply, but I have had first hand experience with both carboplatin and cabazitaxel.

ncbi.nlm.nih.gov/pmc/articl....

Costarica1961 profile image
Costarica1961 in reply to tom67inMA

I appreciate your 1st hand opinion. I suggested eliminating carboplatin and she stated I didn't do well with docetaxal alone previously, and these treatments alone are similar I like what you presented at least there are options. According to my m.o the risks for n.o 7 are very high , despite that info , I am scheduled for Tuesday. A little nervous about that.

Tall_Allen profile image
Tall_Allen

Men who do well with carboplatin, may respond to PARP inhibitor maintenance therapy.

Costarica1961 profile image
Costarica1961 in reply to Tall_Allen

I will discuss with Dr beers thankyou

Cleodwoman profile image
Cleodwoman in reply to Costarica1961

Where is Dr Beers located at? And yes, get a second opinion.

Costarica1961 profile image
Costarica1961 in reply to Cleodwoman

Oregon. Thankyou

Cooolone profile image
Cooolone

There has been noted examples of re-sensitivity to Hormonal Therapy like Zytiga, post chemo therapy. Has this been explored?

Costarica1961 profile image
Costarica1961 in reply to Cooolone

This was in the back of my mind now in front thanks to you

MeliaQuinn profile image
MeliaQuinn

Where are you being treated? My husband had 8 cycles of docetaxel and tolerated them very well; he then decided to take a break, the cancer came roaring back within 2 months. He had two more cycles of docetaxel but the oncologist felt it was time to try something else as it was not keeping his PSA down and more mets were growing. If we were able to do it all over again I would make sure that he was at one of the best cancer facilities in the country! Good luck to you!

Costarica1961 profile image
Costarica1961 in reply to MeliaQuinn

Oregon knight cancer, the problem is a lot claim to be top cancer facilities. Good marketing i guess. And I see their education as john hopkin and Harvard grads, which is impressive on paper but if they don't specialize in your cancer there often not up on everything they need to know to be on the cutting-edge treatments, I have dealt with this more than once in 5 years. And you're right about the best, but not cancer centers, but more specifically a doc that is only about prostate cancer.

Chugach profile image
Chugach

Hey Costa - see if you can find a different MO and get another opinion. Before I started treatment- I got 5 second opinions. At this chapter we find ourselves digging into the options and literature more throughly than some MOs. Find an MO that is searching for a cure. That doesn’t mean you need to abandon your current MO, keep them both. It’s not like a marriage.

Pura Vida Brother - Stay Strong!!

Costarica1961 profile image
Costarica1961 in reply to Chugach

Thankyou. I do have a appointment tomorrow at 8 am with another doc. And I am researching on my own as well. Still fighting , I've got wobbly knees, but not on the canvass yet.

Chugach profile image
Chugach in reply to Costarica1961

I was in the same spot 15 months back - doing good now. Stay strong

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