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What next after Zytiga

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Posted 3/9/2013 12:17 AM (GMT 0)
Hello
I am new to this forum and am grateful for the information and experiences I have read here. I have a close friend that is 52 and was diagnosed with stage 4 gleason 8 about a year ago. He has been on many hormone therapies, chemo and radiation for a spinal compression fracture. In January he started Zytiga his psa was 229 then Feb his psa was 62 Mar his psa was 64. He has always had some pain but the pain in the pelvic area has gotten so bad again. He takes morphine slow release and now he is taking the fast release every 3 hours. He has lost a ton of weight has no appetite everything taste horrible. What can I do. Any suggestions on food. We have talked to the Doctor about Provenge but he said the cancer is to far advanced at this point. What else can they do. What can I expect.

Thank you for any thoughts suggestions you may have confused
Posted 3/9/2013 1:24 AM (GMT 0)
jojo9

Sorry to hear about your friend. I'm surprised that he was only DX a year ago and has already been thru multiple therapies. Do you know how high his psa was at DX? Do you know if he has tried Keto or Estradiol patches? Has he sought a second opinion? If his insurance would pay for provenge than why not try?
Posted 3/9/2013 4:15 AM (GMT 0)
jojo,
i was told provenge would not work for me cuz I was too young. I dont buy it. I would get aa second opinion. other options.... tak-700, mdv-3100, radium 223, xl-184 chemotherapy ipilumab. many of the drugs I have mentioned are in various stage of trail but show great promice. radiation can curb the bone pain. get a new doc if yours is unwilling to try. Tod
Posted 3/9/2013 4:54 AM (GMT 0)
At DX his psa was just over 500. They first said he had back issues and gave him muscle relaxers then he had blood in his urine and so he went to a urologist. Every week for 3 weeks they did a different test then finally a month later they said whoaaaa you got cancer and it is very advanced your only hope is a clinical trial. So off to a big hospital which then said because he was in so much acute pain they needed to stabilize him first. That is when they found the compression fracture in his lower back. They gave him 2 shots of Degaralix and got the pain down. Then they started lupron and said he should be good for a year but 2 months later his psa started to rise rapidly so then it was a possible clinical trial which after a thousand more test they turned him down because he had numbness in his legs. So then we start chemo Tax and that gets psa down to I think 80 and then the second month it is back on the rise. Somewhere in there they started Casodex and he has been on predisone almost the whole time. So in January his compression fracture goes into extreme pain and numbness to the point where he is always in a wheelchair. So they start Zytiga and do radiation on the lower back.
Posted 3/9/2013 5:33 AM (GMT 0)
You said he has tried chemo already by which I assume you mean Taxotere, and perhaps Jevtana. If so, he probably meets the qualifications to get Xtandi, which is a hormonal therapy that often keeps working after the others fail:
http://www.xtandihcp.com/

He may also meet the qualifications to get Alpharadin for his bone mets under the expanded access trial:
http://clinicaltrials.gov/show/NCT01516762

As for immunotherapy, he may qualify for a Phase 2 clinical trial of Yervoy (ipilimumab):
http://clinicaltrials.gov/ct2/show/NCT01498978

A lot of clinical trials require that patients be chemotherapy-naive, unfortunately. However, there are many medicines that have been approved for other cancers that may be included in the unlikely circumstance that his insurance company will pay for their "off-label" use. For example, Cometriq (cabozantanib) has been FDA-approved for a kind of thyroid cancer, and Yervoy (ipilimumab) has been approved for melanoma. I'm sure they will be approved for prostate cancer soon.

There are a host of medicines like angiogenesis inhibitors, mTor inhibitors, somatostatin, HDAC inhibitors, metformin, etc. that are already available and may be of benefit. I hope he is under the care of a good oncologist who is willing to work with him and has some clout with his insurance company.

- Allen
Posted 3/9/2013 11:00 AM (GMT 0)
Allen- very good reply and off label items even if you have cash money for them, it would be likely difficult to get any doctor to write the script for most of these options, but it still is an possible option to consider. Some people have gotten other off label scripts for PCa useage.

Todd- mentioned some drugs that are looking promising for PCa (trials)

I am wondering if this mans cancer is a variant type of PCa, maybe you can read his pathology report for details. His responses are not very good and the spinal fracture is a problem and weight loss within his scenario is also problematic. He may still have some choices to consider, he may also have to consider hospice situation or look into such soon. A biopsy can miss other areas in the prostate gland, that could even harbor a different and/or higher gleason score(s), might have Gleason 10 and/or the DNA ploidy of his PCa cells might be aneuploid or teteraploid (which are like random chaos DNA chains, unlike diploid and normal cell structure DNA). The prognosis of those DNA types is worse and hormone therapies either don't work in some cases or don't work as long as they do in the average patients. Just some random thoughts on this, not that I know his situation.....but it is a rough scenario.
Posted 3/9/2013 7:42 PM (GMT 0)
Hi Jojo
so I think the thing that caused you to post now is the lack of progress, or even the little blip up in his PSA on Zytiga? If so, know that there is something called a zytiga bounce, that sometimes people see the number drop, then bounce up again, but it doesn't mean that the zytiga isn't working. I don't know the details (others on here may clarify) -- my husband is on zytiga but didn't get the bounce, so I haven't really looked into it. But I wouldn't conclude that you've gotten all you can from zytiga at this point.

Are you going to dr. appointments with him? If you haven't, see if he's willing to let you join. It's confusing stuff, and helpful to have another pairs of ears taking it in, and asking questions. Also, if the doctor is ok with it (and it'd be weird if they weren't), I'd recommend taping the appointments too...it's amazing how much harder it is to take in info in situations like these.

Do you like the doctor, do you feel they're listening, motivated, experts in prostate cancer? if not, try out another doctor. it sounds like you aren't getting all the info you need from this one.

Good luck -- keep sharing info with us and asking questions. We want to help!
Posted 3/10/2013 7:27 AM (GMT 0)
I have gone to all of the appointments. My friend is a very passive person and he fully trust his doctor. I on the other hand am more outspoken. I post most of the questions and I am the one that calls the doctor when things do not seem right. Yes I am very frustrated and I don't think we are being aggressive enough. I feel like they try one thing and then when he is in acute pain and ends up in the hospital then they try something else. He goes 6 weeks in between visits unless we have major problems. Every clinical trial they say he does not qualify for because he is so advanced but yet when asked about what we can expect or a timeline the doctor brushes it off and acts like he will be out golfing next month. Way to many mixed messages. It is so devastating to see someone you love in so much pain.....
Posted 3/10/2013 10:50 AM (GMT 0)
Like the others said, I think a second opinion is needed. We got one and it opened our eyes on how to treat this beast.
We had been with a doctor who sounds just like the one you have! He moved my husband from treatment to treatment, based only upon the PSA, no scans. Finally he said, all I have for you is jevtana or why don't you take a break?
Our second opinion doctor discussed how he thought the treatment pattern had been too quick and should have had scans done as baseline and then during the treatment.
Because of his advice, we left our doctor, found one much closer to home and we also have an oncologist from Dana Farber in the loop. We know trials are in our future but not right now.
Right now, my husband is on zytiga - again. He was on it a year ago and the doctor pullled him off it because the PSA went up (oh I long for those days when the PSA was only around 20!). He was on it barely 3 months.
Like your friend, my husband has pain in the lower back and pelvic area. We are worried it is related to the cancer but we are wanting to give the zytiga a good run.Like Infohound said, there may be a bounce and we are prepared for that. One reason we haven't learned the most recent PSA!
Second opnion is a very good option for you - just to get another perspective. Very very valuable.
Posted 3/11/2013 5:08 AM (GMT 0)
I have another question he has had bone scans and mri's but has never had a pet scan. I have read where many have had a pet scan. Is this a test that might be helpful.
Thank you
Posted 3/11/2013 6:05 AM (GMT 0)
My husband is very advanced with PSA much higher than your friend. He has had his first radium223 after all the other treatments and after the first week, his severe pain is almost all gone. He does use pain patches but even those have been extended. I'm not saying by any means he is feeling great, but the radium treats the pain in the bones and so far it seems to be doing a good job. I'm wondering if now the patches are too strong and that they may be causing his nausea. Nausea is his worst issue today.
Posted 3/11/2013 6:06 AM (GMT 0)
Forgot to add, through all of this he has never had a pet scan.
Posted 3/11/2013 8:00 PM (GMT 0)
I have talked to my friend and he is adamant about not getting a second opinion so i decided to search into the radium 223 option. Found a clinical trial about 60 miles from where we live so I have contacted them thru e mail. I would like to know Jitters99 if your husband has a spinal compression fraction. Also has your husband tried Zytiga as Charlie is on that right now. Thank you for any info you can give me. He may not want to see another doctor but that does not mean I have to sit back....woman on a mission!!!!
jo
Posted 3/12/2013 3:57 PM (GMT 0)
Just talked to a very nice woman from the Bayer Co. which has all the options for radium 223 and the only clinical trials are on the east coast and west coast. The one in Wisconsin is closed. Well that was a nasty brick wall. Any other suggestions that can help with the pain?
Jo
Posted 3/21/2013 3:59 AM (GMT 0)
Well tried Bauer again and now they are not sure if it is full so called doctor and he is going to check into it....also sent him the YouTube on the MRI ultrasound which sounds amazing to me. This site has been amazing for me great info and suggestions. Thank you
Posted 3/21/2013 4:41 AM (GMT 0)
jojo9
No my husband does not have spinal cord compression. He does have severe mets in his spine and severe herniated disc L4 & 5 with two recent surgeries on it, Oct and Nov last year. Yes he was on Zytiga, worked for 2 months, then Xtandi for 3 months. Tomorrow is his second injection of 233. The last to days have been really good. Pain in very limited and nausea gone, unless he waits to long to eat. First time in 2 weeks he has mentioned his lower back is bothering him..went one day past patch change, so a huge improvement in pain AND nausea. We'll see how it effected his PSA and CBC tomorrow and how he responds the following week.
Posted 3/21/2013 10:59 PM (GMT 0)
I saw a great presentation by Dr Kwon at Mayo -- He tackles some very advanced cases and he has access to advanced scans and clinical trials.

He's on my short list of people to see if my stats go against me ...

Ray
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