My dad finished radiation a couple days ago and his RO (I was not present) told him he probably has 6-12 months to live, and maybe another 6 months with chemo. I am shocked that he gave such a short time. He did say this was palliative radiation for the prostate and bone mets to his hip and pelvis.
Although he is weaker than usual he is still independent and drove to most of his radiation appointments. I was hoping that chemo would extend his life more than 6 months. He is supposed to start chemo with docetaxel soon. Currently he is only on lupron as everything else was stopped. I was wondering what options are available after chemo fails? He already has been on lupron, casodex, zytiga and xtandi. I see that a lot of people are doing trials. Do they pay for travel? We are in southern california and there does not seem to be any trials here. Thanks everyone for your support.
Dx 1/2017 - PSA 100 started casodex for 1 month then lupron every 3 months. Biopsy Gleason 4+4 16/16 cores positive. Bone scan negative.
3/2017 PSA 4.9
5/2017 PSA 5.0
6/2017 PSA 4.3
8/2017 PSA 3.8
10/2017 PSA 5.3
11/2017 PSA 6.2 - started zytiga and prednisone
2/2018 PSA 2.7
5/2018 PSA 4.3
6/2018 PSA 7.0
8/2018 PSA 10.8 Bone scan negative.
10/2018 PSA 13.7
11/2018 PSA 16.1
1/2019 PSA 25.2
2/2019 PSA 35.2 Bone scan small spot in right pelvis.
3/2019 stopped zytiga and started xtandi for 1 week. He got very fatigued and stopped xtandi.
4/2019 PSA 39.9 Kidney function worsened so he had ureter stents and tumor scraping of the prostate. Pathology of the prostate showed >95% of the scrapings Gleason 10 adenocarcinoma.
5/2019 PSA 42.6 axumin scan shows "prostate mass extends into posterior and lateral walls of the bladder. Increased activity seen within right hypogastric and left external iliac lymph nodes comptabile with metastatic disease. Multifocal osseous metastatic disease. Most pronounced activity within the right ischium and inferior pubic ramus where there is a soft tissue mass. Additional osseous metastatic disease is seen within the acetabulum, right iliac bone in the lower lumbar vertebra."
He got palliative radiation for nearly the whole month of May to the prostate and involved bones in the pelvis.
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However, sometimes the radiation destroys so many resistant cells that Lupron and Zytiga will work again. I would just try that now. He could also try Erleada instead of Xtandi. Erleada does not cause the fatigue you observed with Xtandi.
If it does not help, start with the Chemo and then with the Vision trial. After a Chemo you can do a Zytiga "rechallenge", this will usually work for a while.
Provided all this works for your father he should live longer than estimated by the RO. However, his diagnosis is no good.
Did they try lowering his dose of Xtandi when he had fatigue? Did you try taking it at night before bed? Since he is relatively treatment naïve to this drug, they could rechallenge at lower dose....some people are on 3 tablets--120 mg daily and some even vary the dose between 3 tabs some days and 2 tabs other days to counter the fatigue...
When he was on Zytiga--did they change from prednisone to dexamethasone as people have done that to continue using Zytiga for a while longer...
Magnus, I think you will not live longer because you fired the doctor. You should talk to other doctors to see if they can recommend further therapies that seem to provide an additional benefit. Or look into the recommendations you get in this forum.
Yeah, just change RO immediately and get a second opinion, doctors that give time estimates are never good doctors.
My father was given 6 months and he's currently doing well, at over 2 years from diagnosis and a PSA of just 0.52, so I expect him to do well for at least a few more years.
People are not numbers, every single one of us is unique and you can't really predict this disease.
I wonder about why he didn't go for radical prostatectomy though?
It would have made things much easier and helped him a lot in the long run.
At the time of diagnosis there was a enlarged lymph node which they said is cancer since it’s on the same side as the cancer so they didn’t offer to remove the prostate.
I am suprised he dud not get chemo with hormone therapy right away, it is tough when soft tissue is involved. My oncologist did chemo right away as it already to spots on the bone, it stopped the activity, prostrate not removed but dead with the chemo. My psa went from 156 to 14 with hormone shot then dropped to .4 after chemo, was .6 until last psa jumped to 1.8 but was taking a herb that was not cleared by him that could have affected the psa. With the last shot I am getting the hot flashes 5 to 8 times a day so I think the psa will go back down plus taking the herb that increased the male hormones which I did not know until I researched more so I stopped it. Everybody is different and there is no time table that the doctors can refer to, with my treatment there is a 10 year survival rate of 85 %, I like those odds.
As far as we know his liver is fine. Kidney function is nearly normal after they put in stents. I believe he gave the prognosis based on how quickly my dad got symptoms and the PSA increase? He was fine in December, then in the last few months had all these issues.
It seems your man has got a bad prognosis for Pca, but no one has suggested Lu177, which may have worked for him, or could still work, depending on kidney function. Its expensive unless its given in trials.
MD Anderson in Houston has done a lot of work with immunotherapy ...They have a Ronald Mc Donald house and a Marriott ( on campus called the Rotary House) at a much reduced rate. Fly to Houston Hobby (HOU). Only a cancer hospital...part of University of Texas....If you decide to go I can help with logistics...they make it easy...do not give up...They will do your labs right in the Rotary House a day before your appointment...act now .....call them if you have financial problems ...it is an amazing place...Best to you and your family
Just an update....still working with the FAA on approval to fly again by myself...and retain a commercial ticket...Lets start a go fund me page so I can buy a Gulfstream and ride in the back...I will come pick you up.....!!! Grounded Sky King
Thanks for your input and offer to help. Would it be better to do some testing here in southern california first to see if immunotherapy would help? Just looking for ways to avoid spending a lot of money (flight, hotel, etc).
Contact MD Anderson, they will get you to the GU department and you can explain your situation...I got a PET scan at Duke and they were fine with it...they understand people who live out of town and will give you the best options..The rotary house will cost you about the same as a Holiday in express for a standard room you have to be a patient, or prospective patient and family...uber from Hobby (airport) and get it all done on one trip.....if you are having financial problems I flew for Angel Flights for many years. You may qualify for Angel Flight Corporate and they will put you on a private jet..it is done all of the time. MD Anderson may set you up with Ronald McDonald house they also have apartments which are donated for patients who have difficulty...do not be embarrassed about money ...their are ways..but you have to talk to the right people...Again what ever teaching or research hospital may have the same options and these people really do good work...Grounded Sky King...
Did you know Don Angier?? Lived and flew Angel out of AZ in the 80’s. Was C130 OinC Rota Spain. Quit Angel when he made a W0XF0 one nite in snowstorm. Good stick. I am USN carrier pilot, flew Stoofs for 21 years. Still remember every nite trap. Am 83, mCRPC
no I do not ...I do know Dave Maskell who I have his tail hook in my office at the airport...after and during his reserve time he flew 32 yrs for Delta...Honor to know you guys...I once asked him a stupid question....I asked him his V Ref....he said no idea he was watching the ball....Blue Skies Grounded Sky King....I have a 58 Baron but fly first officer for a C-680...auto throttles and all glass....My Baron is all glass so a lot of fun....first plane a P-18 Super Cub...really .......real flying....thanks for responding ......It is an honor ...Dave is 81 I think but he may lie...a little Maker Mark and we all lie or fib just a little.....
I was told I had two to three years in 2012. In 2015 I discovered the cancer research going on at the Univ. of Maryland Medical School and started taking IP-6. I am a G8, 77 years old. Please review these posts of mine and message me with any questions:
I hear great things about LU 177 and Actimun. It’s on trials here in the states, look them up on clinical trials.gov, I think. If you can’t get into a trial, or don’t fit the requirements, you can get treated in Europe but you will have to pay for it. Germany has a few places offering it - Munich university hospital, Heidelberg university hospital, etc. very fast to get in there too, they have a web site for international patients. I think sloa Kettering has a phase 3 trial as well. Good luck. Don’t give up yet!
yikes ...giving someone 6 months to live seems unusual with our disease , my mo likes to say that everyone is different and they surely are. my first visit to the onc doc I had PSA of 1400 ( probably more like 1600 ) and all my blood chemistry was well off the bottom of the green zones and headed to zero on many. I have mets all over my body. heck my mets have mets there are so many of them. radiation and surgery are generally out of the question. my first visit to my onc doc , my doctor brought my wife into the room and then brought in the hospice nurse to start immediate hospice arrangements for me. anyway that was 6 months ago and now ALL my blood chemistry is back to normal ( more or less ) and my PSA has dropped to 0.2 and still dropping. I started Lupron - Xtandi - Zometa and although it nearly makes me crippled half the time ( never mind the mind boggling awful effects of the Zometa infusions ) I stuck with it, preferring to live and be nearly in a wheel chair if necessary rather than the alternative. I can't imagine stopping a treatment that is working so dramatically. even if my current treatment stops working there are 2 more similar alternative treatments , chemo and two new effective treatments out of England and Africa and over 250 new treatments are being looked at in the USA pipeline.
the point of all this is that you can never really know how long someone has left and there are some really effective treatments if you would stick with them. there are lots of reason to be optimistic and think of living many more months even many additional years. I'm not saying that he doesn't have 6 - 12 months to live but that I'm still here and going strong is testament that good things really are possible for us guys with well managed treatment. cheer up and think positive and above all else stick with your treatments as long as they produce positive results. listen to the advice from the extremely knowledgeable guys here that are very well versed in current treatment and alternatives and then take that you your medical provider. just say'in ............
now the stupidity : my doctor said I had 6 months to live, and I said " but Doctor I can't pay my bill off in 6 months " , so then the doctor gave me another 6 more months to live !!
i told my doctor , " it hurts a lot when I press right here " .. my doctor said ... quit pressing right there !!
You could try Care Oncology Clinic's repurposed drugs protocol. It's tissue agnostic, they describe what they offer as an adjunct to what you are already receiving. Side effects are almost nonexistent. I couldn't find much in the way of double blind studies although the drugs they use do appear on pubmed. Unlikely that insurance will cover it (mine declined). The initial consult is $800 +, but the prescriptions are in the $60 a month range.
They began in London where they have a physical location, here the process is handled through phone and virtual visits. My first conversation was with someone in LA who had gone through RP when he was 37, a decade ago. 4 years later his cancer returned. He described a difficult few years of ADT and finally scans lighting up like a Christmas tree. After some months on the COC protocol he says that his spinal lesions have healed and he feels great.
I was diagnosed 7 months ago. Gleason 7(4+3), PSA 11, localized large aggressive tumor in the left half with an extra capsular extension. The local urologist recommended radiation. Went for second opinions to Cleveland Clinic and Sloan Kettering, their thought was surgery would be a better option. The doctor at Cleveland told me about the apalutamide adjuvant trial they are conducting, giving apalutamide before surgery. He was seeing almost no cancer in some patients at the time of the operation, which in my case would be very good news as I would not have been a good prospect for nerve sparing. Unfortunately I have the wrong genotype for their trial. I found another trial at MD Anderson, went to Houston for a consult and their pathologists had reclassified me as Gleason 9. As their trial was for intermediate grade it was back to the drawing board.
In my constant reading and research I came across "How to Starve Cancer", Jane McLelland's account of her experience developing a metabolic approach to treating her own cancer, repurposing old off label drugs to target the specific pathways cancer can use for energy metabolism. (Highly recommend this book, her account is mostly anecdotal, but now the information she assembled over the past 20 years is being pursued by researchers all over the place.) She writes about Care Oncology Clinic.
My PSA is stable, the local Oncologist says that if I take a few months more it won't hurt me. I am going to go ahead with the COC approach as a first treatment. They use a 4 drug cocktail, working with a local Functional Medicine doctor I will add a few others.
In my opinion, this is a kind of "proof" that this RO is not the right one and perhaps is time to change. NO RO has a crystal ball or the absolute knowledge (they pretend so, like some people here....) but is not like that. Most do not even understand the basics of statistics (where the info at the end comes from). Keep cool and look for more supporting alternatives.
I have been thinking overnight about your situation. since you are in Southern Ca contact Dr Robert Leibowitz of Compassionate Oncology for a second opinion. Im sending other stuff to you but Ill do it piecemeal. I lost the last message.
I was treated by Dr Bob indirectly via my Dr Kemp in NYC in 2004. Ihad a PSA of 4.7 and I took 3x50mg of Casodex,a monthly shot of Zoladex and 5mg of finasteride for 13 months.
!5 years later Im ok. More to follow...
I couldn’t beat a prognosis out of my drs. I really think they don’t know themselves how it’s going to go. Most here talk about beating the drs guesses by a long time. I’d go with that and get to a big hospital that deals mostly with cancer.
It's like the doctor is playing pin the tail on the donkey using a rubber eraser for a pin...The only thing they can predict accurately is when they're going vacation or buying that new Mercedes. BTW how old is your Father?
1) There is an ex Group montitor from NTPC whose father may have been in your situation. His first name is Roger(?) and he is advocating a new PCSPES herbal remedy. If you google PC Spes you might find him and tell him your situation.
2) Lloyd Ney was responsible for bringing Lupron into this country years ago. There is a group Pcri? It is a support group for patients with Mets. They may direct you to someone who knows your next step.
3) Post on NTPC and say the same as Health Unlocked. Someone may help.
4) On this Health Unlocked site ask Patrick O'Shea as he the most knowledgeable I know.
Ignore the predictions.. the doctors do not know. A good doctor would talk about the disease.. our first oncologist talked about the months until the disease stops responding to treatment.. My husband has Neuroendocrine PCA as you can imagine the estimates did not make me happy. July 2017 an oncologist at Mayo Clinic gave my husband 2 years even with aggressive treatment. It is June 2019 and My husband is very much alive and has had good scans. We fight the disease on the medical and nutritional(integrative) fronts. If your Dad is open to it.. you could consider adding juicing to your routine ? Check out thevidaprotocol.com - Theo will email you their juicing and food protocol. They won't spam you and it is totally free. He is a great guy and helps with the Square One cancer coaching. -- just something to add to your cancer fighting toolbox. Sending you lots of hugs, prayers and love!
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Axumin Results
Still confused on next step
Help on next step - Chemo or Xtandi?
