HealingWell
Search Close Search
☰

To continue or not to continue

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/15/2015 2:40 PM (GMT 0)
I began treating this disease in 2008 and have spent approximatley $175,000 out of pocket since that time as I was uninsured at the onset. So far, none of the treatments have been effective and all have failed. RT and HT several rounds. Opted for RT because initial evaluation indicated possible lymph node involvement and uro said surgery would do nothing to treat nodes. (I now know this in not necessarilly so) Brief retraction of psa growth but lowest was .05 and was over 2.0 four months later. Mets to lungs showed up last year but nothing in bones. Recent CT says lungs are no better or worse than a year ago. Nothing in bones.

Oncologists does not seem to have a clear idea of what to do. We discussed chemo with continuing lupron on previous visit but on last one he has opted for Xtandi. We do discuss costs and I think he has gotten the impression that this is the most important factor for me. It is not. Cost effectiveness is. I. E. what do I get for the money. Cost to me with Medicare is $2700 for 30 days. No real assurance that it will work but it will continue to drain my bank account. Most recent psa is 14. At what point is enough enough. There is no hope of halting or curing the disease at this point and treatments only offer modest survival benefits coupled to bothersome but tolerable (thus far) side effects. I can always tell when lupron is wearing off as I start to feel better and have more energy. Maybe just halt all of it and have a few months of good QOL.

Anyone who has taken Xtandi can you say how quickly you had a response, strength of response and duration before failure. I am not optimistic about my expected results. I am going to give it three rounds before I pull the plug if there are not dramatic results. One or two PSA points will not be enough to continue.

Moderator if you see this post as a downer just delete it. I would still appreciate hearing from Xtandi users.

Don
Posted 1/15/2015 3:01 PM (GMT 0)
Don I truly sympathise with you and know the feeling. Best bang for your buck? For me that was an Orchiectomy less than $1,000.00 and HT done and over with. I'm not recommending anything just stating what I did. It will work until I become hormone resistant then chemo I would assume. As for being a downer post, aren't 90% of posts a downer when taken in context? I for one would be upset if your post was deleted!

Cheers, Doug
Posted 1/15/2015 3:49 PM (GMT 0)
Thanks for the reply and empathy, Doug. When I was first diagnosed my ex wife, a nurse, spoke to a friend of hers who worked with one of the best oncology practices in the area about my case. Her friend said that after seeing many of these cases that I would be better off with the orchiectomy than with the side effects of HT. I see now that she was correct and gave me good advice. However, I am famous for not taking good advice :). I just could not bring myself to cut the boys loose as that seemed to me, at the time, a crossing of the Rubicon. I suspect that my recent resurgence of heart issues is a direct result of the continuing HT. Live and learn I suppose.

Best to you,
Don
Posted 1/15/2015 3:55 PM (GMT 0)
Don,

If we deleted every post from someone who is discouraged or cranky we could reduce the amount of disk space this forum uses dramatically. Your post is fine.

I have an agreement in principle with my MO that if I ever get where you are now we will look into doing our own n=1 trial of Bipolar Androgen Therapy which is a wild-ass new treatment for castrate resistant PCa where they alternate between castrate levels of testosterone and impossibly high levels. John's Hopkins is doing a trial and has recently released some results --

Effect of bipolar androgen therapy for asymptomatic men with castration-resistant prostate cancer: Results from a pilot clinical study

-- which seem generally positive.

There is an oncology group in LA that has been into this sort of thing for quite some time. Their writeups on their methods are irritatingly hucksterish and they have been well out ahead of the science -- but the science does seem to be catching up. Here's a link:

Compassionate Oncology Medical Group
Posted 1/15/2015 4:01 PM (GMT 0)
Don, I don't know what the best route for you is. Just know that this forum is here for you to help explore your options and help you decide. There will be some wiser advisers along to help you better than I can, but non of us would ever consider someone exploring their options as a downer. We are all here to support and help those who ask for it. Good luck.
Posted 1/15/2015 4:02 PM (GMT 0)
Don, your post is exactly what this forum is about. I wonder sometimes about my posts where I'm concerned about something and may come across negatively, but come on, look at what we're dealing with here!

There are dark sides to our situations; most of the time we're ok, but sometimes despair sets in. We support one another in various ways, but if you can't say here what's on your mind, where else would you?

Treatment side effects vs. QOL is a constant struggle as the treatments get more aggressive. My brother-in-law struggled with that having chemo for his pancreatic cancer. It gave him a few extra months we believe, but half of that time (every other week more or less) he was pretty ill from the chemo. We talked about it near the end, and he thought it had been worthwhile though not easy.

I think it's an intensely personal choice of when enough is enough. It doesn't seem "fair" to even have to make such decisions, really. Personally, the money aspect probably wouldn't be my main criterion; rather I think it would be the QOL tradeoff for the hoped-for extra time. How much is a day worth? A week? No idea how to assign dollars to that.

All the best as you consider your options.

Jerry
Posted 1/15/2015 4:05 PM (GMT 0)
Peter, I have heard and read a bit about this treatment. I am also vaguely aware of the COMG as they were mentioned some time ago by another member. Thanks for the article as it adds to my list of vexing questions for my oncologist. I think I drive him a bit nutty with my endless questions.

Glad we have plenty of disk space. :)

Best to you,
Don
Posted 1/15/2015 4:21 PM (GMT 0)
Hello Don

I am also looking to get as much information about Xtandi as I can as this is the next treatment for my Dad.

Dad has 3 monthly HT injections, this was great at the begining he was out and about back to normal, for about 4 months. Taxotere has been very good very few side effects and once again Dad improved greatly and had much better QOL. Everyone is different but on the experience of my 81 year old Dad I would recomend giving the Chemo a try, if it doesn't suit then stop and you can try something else.

I wish you the very best of luck, only you can decide what to do just grab as much information as possible ask as many questions as you need.
Theresa
Posted 1/15/2015 4:26 PM (GMT 0)
Don, you should be able to find some foundations that help cover medical expenses in situations like yours.

One I have handy that paid $1,000 toward my SBRT travel expenses is Patient Access Foundation. They make their financial aid decisions on the first of each month, but you may want to call them before 2-1-1 to do some planning (800) 532-5274.

www.pcf.org/site/c.leJRIROrEpH/b.5856497/k.F968/Financial_Resources.htm

www.cancercare.org/publications/62-sources_of_financial_assistance

The disease is bad enough without also depleting one's assets.

LupronJim
Posted 1/15/2015 4:49 PM (GMT 0)
Startech and Jerry, thanks for the words of encouragment and empathy.

Jim, I have looked at these programs before and found the intrusion into my finacial affairs over the top. One even asked about the amount and sources of income of my family members. (this was a hospital that sent me an unsolicited aid form for an ER visit because I was uninsured at the time) I thought the next question was going to be "Have you checked under the sofa cushion?" :)

Theresa, I have been reading replies to your post as well. Should something of interest show up here and not there I will pass it along. All the best to you and your Dad.

Don
Posted 1/15/2015 5:59 PM (GMT 0)
Hello Don,

Jim has just started his 2nd 90 day round with Enzalutamide as part of a clinical trial At National Institues of Health in Bethesda. His response to it was quick (Psa down from 3.44 to 0.64 in 2 weeks) and the side effects were much less than he experienced on Lupron. He completed the 12 month trial in Dec 2014 and the trial is being extended /ammended to trying another 90 day dose of enza.

It's pretty much an "all expense paid vacation day in DC" every month.
He was in the Hormone Sensitive arm of the trial but there's also a castrate resistant arm that is still listed as recruiting:

/clinicaltrials.gov/ct2/show/NCT01867333

We couldn't qualify for enza or afford it without the trial. Give it a look to see if you may qualify.

Marie
Posted 1/15/2015 6:46 PM (GMT 0)
Don,

I'm not sure how much server space we have, but you're not over the lines for the rules, so your post is safe from me.

I'm also at a turn, as my PSA started going back up despite the Lupron. We are in the midst of med changes right now, so the future for me is whatever happens next.
Posted 1/15/2015 7:01 PM (GMT 0)
Marie,
Thank you for the heads up. I just spoke with a coordinator and the trial is still open. She is checking with my oncologists for records and tells me it may take two weeks or so to determine if I am a good fit. In the meantime I am to hold off on the initial Xtandi dose.

Again, I appreciate the information and the link.

142 I know the feeling and empathize with you. Good luck with the direction you take.

Don
Posted 1/15/2015 7:51 PM (GMT 0)
Don
I know we are all different and drugs have different effect/reactions with us, also our cancers are all different but for me Xtandi has had a miraculous result so far.
March PSA 24 Xtandi
April 18
May 2.4
June 0.99
June 0.79
Sept 0.46
Oct 0.24
Dec 0.20

I am generally in good health and feel well, I have a few issues with the SE of the ADT but you just try to work around them as best as you can. I find the mental side is the hardest and it is always lurking in the back of your mind "when are things going to change".

But considering my G9,PSA of 254 at Dx and bone mets I feel I am a positive story.

All the best.
Regards

Geoff
Posted 1/15/2015 8:41 PM (GMT 0)
Don,

I wasn't clear from your post whether you are castrate-resistant or not. If you are still hormone-sensitive, the best bang for the buck is undoubtedly Taxotere. Of course, during the few months of treatment, your QOL will not be great, but most find it tolerable. Afterwards, you can reasonably expect better QOL and a median 1.5 yrs of extended survival. I'm a big fan of multimodal therapy, so throwing Xtandi at it at the same time might improve outcomes.

If you want to save costs, I think your best bet is a clinical trial. If they are sponsored by drug companies or NIH, drug costs are covered.

- Allen
Posted 1/15/2015 9:33 PM (GMT 0)
Geoff, your stats are encouraging. I have done the CABG thing as well at age 48. I am not and never have been overweight just a history of familial heart disease and high cholesterol. My exercise and diet did not stave off the inevitable but I had a rapid recovery after surgery. Even doctor was impressed. HT has not helped the heart issue and found out a month or so ago that one of the grafts has failed. Could not stent due to condition of vein.

TA I am investigating the trial suggested by Marie. Should only take a couple of weeks to know if I fit the criterion. I am not sure if I am totally castrate resistant as my PSA does back up slightly after each lupron shot and then begins rising after a month or so. So, there is still some repsonse. In my previous discussion with onco we talked taxotere with lupron and Xtandi. Last discussion he was thinking we could do ok with just Xtandi and lupron. I think he is trying to lighten the financial burden.

Don
Posted 1/15/2015 10:18 PM (GMT 0)
Don,

Feel free to email us if you have questions or want our phone# to talk about the trial. Are you speaking with Nancy Harold there?

Jim has nothing but good things to say about NIH and the treatment he has had there. I believe another Don(Adjust) on this forum got into the trial but then dropped out due to rising PSA.

142, it might be time for you to get in that trial too! I can't believe they are still recruiting.
They are trying get Jim to do a MRI(Ferumoxytol) Study for detection of lymph node mets. I'm wondering if thats the one Sonny3 is doing. They also have done Genomic testing of his blood. We don't get info about it until all the info is accrued and results are out on the study. Eh, what 2 extra vials of blood when they take 12 a month anyway!

Marie and Jim
Posted 1/15/2015 10:26 PM (GMT 0)
Don,

Castrate-resistance is usually defined by rising PSA over 2.0 on 2 consecutive tests at least 1-2 weeks apart while on a drug like Lupron or post-orchiectomy. There is an advantage to this designation: you qualify for drugs (like Xtandi) that insurance would not otherwise pay for. It also means you qualify for a much broader range of clinical trials that may cover your treatment costs. Your lung mets also change the therapies and clinical trials you qualify for. I think the clinical trial Marie mentioned is a very promising one - no matter how the randomization goes, you get free Xtandi.

There's also a new kind of chemo one can take as a pill that you might qualify for:

/clinicaltrials.gov/ct2/show/NCT01296243

- Allen
Posted 1/16/2015 12:16 AM (GMT 0)
Hey Don,

I was on the Xtandi/Prostvac clinical trial that Marie mentioned. I agree it is a great trial if you can get in and either arm is a great treatment. I truly believe I am the exception to the rule on having no response to Xtandi and suspect the mechanism involved. I have not been tested for the AR-V7 variant that was recently linked to Xtandi resistance, but they (NIH) did do an analysis that showed I do have an overexpression of androgen receptor.

I'm not on that trial now, but I am working with the same team on a second trial of Taxotere/XL-184.

Feel free to e-mail me and I can drop some names / contacts. I can't say enough good stuff about NIH and the care I've gotten there, I am really hooked on the place. It's a 6 hour drive for me every 3 weeks, but as Marie said, re-reimbursed for travel and many meds have been provided to me at no cost.

My best to you, and please feel free to e-mail me for more info!
Don (yeah another Don)
Posted 1/16/2015 3:16 AM (GMT 0)
Thanks, Don. I had made an inquiry on the AR-V7 test and found it was not commercially available as yet. Likely to be relative expensive also. (So what else is new, eh?) I understand that this protein variation is also a marker for lack of response for Zytiga as well.

I am waiting to hear if I meet the criteria for the trial. Last trial I looked at my lung mets knocked me out of the pool. My sister was in some sort of study at NIH and she raved about the place and people. Thank you for the kind offer of email with questions. I will wait for ruling on eligibility before making a pest of myself. I am about 9 hours away but interstate the whole way. Good luck with the new trial and I hope you have spectacular results. One of these bullets will turn out to be silver eventually.

Don
Posted 1/16/2015 3:25 AM (GMT 0)
Marie, Thank your for the offer to field some calls. I am waiting on NIH to respond. Will take a couple of weeks.

TA I fit the criteria for the castrate resistant as you describe it. Last round of PSA went like this. Test 1 before shot 10.6. Four weeks after shot and adding avodart psa 8.5. Last one two months after second test is 13.7. Fairly close I would say. Your observation on the cost of the Xtandi is not lost on me. At the current cost it would take more than my entire pension to pay for. SS turned me down on disability and I figured what the hell I am only 10 months away from 66 anyway. I have not looked at the link you furnished but will do so in the morning.

Thanks to all for the information and encouragement.

Don
Posted 1/16/2015 4:41 AM (GMT 0)
Don,

Since your PSA seems to be responding a bit after each new round of HT, what about trying a triple HT blockade, as you wait on future options, clinical trials, etc (or, while you also add Taxotere).

My father's oncologist is recommending we triple the daily dose of Casodex (which is apparently the standard dose in Europe and other places, as HT mono-therapy), plus Lupron and Avodart, if/when his PSA starts rising while on HT.

Others have written that switching Lupron for Firmagon, or Trelster can sometimes lead to a period of disease control.

Then, there's estrogen patches that offer another, very inexpensive option.

Just thinking out loud....

Arthur
Posted 1/16/2015 11:22 AM (GMT 0)
Hi Arthur,
All good suggestions. I have been on triple ADT for the last year. We dropped Casodex to see if we could get a response. Not much happened. I also switched one lupron for trelstar. Lupron was still better. The estrogen I have not tried and DES is not available. At least through my doctors. I appreciate your comments and interest.

Best to you and your Dad.
Don
✚ New Topic ✚ Reply