Journey Update- David Abrahams

[DavidAbrahams]

 

David Abrahams Update May 2017.

Owing to family visitors from Bonnie Scotland, a pre - trial interview (medical not criminal), plus attending the RBWH in Brisbane have not participated in the APCF Tele-conference, for a wee while, hence the written update.

Just 6wks away from my ten year anniversary of this “interesting journey” which has had a major impact on my own journey on planet earth.

Overview

Initial Diagnoses and Treatment 2008

Initial Diagnoses was Acute Sciatica however after 3 months of unsuccessful treatment refereed to a Neurosurgeon, who arranged MRI & Blood Test.

Result: 4 shadows base of spine’ cause of Sciatic pain. PSA 126ug/L Most probably have Prostate Cancer Referred to Urologist. Further test etc including a biopsy.

Result 14^th. July 2008 (age 62yrs.) PSA had risen to 138ug/L in 5 days, Advanced Metastatic Prostate Cancer; Stage IV T3 M1+, Gleeson Score 8 + 7

Secondaries: Right side Pelvis, Lumbar Spine, Thoracic Spine, R. Shoulder, Rib #01 R. side

No Symptoms;

Treatment: Hormone Therapy, Zoladex Implant - quarterly, plus daily Anti androgen tablets (Cosudex) 10 days at commencement; once cancer under  control intermittent therapy. Radiotherapy for Pain management; Feb/ Mar 09; Pelvis and Right shoulder. Zometa infusion commenced monthly in Jan 2010; Pain Management partially controlled with Tramadol, Methotrexate & Folic Acid.

Present

Have been on a 12 month hormone therapy holiday with my last Zoladex implant in March 2017. PSA fluctuating between 4 and 8ug/L, testosterone <.3L to <.5L, bone pain under control with the use of 100mcg/hr Fentanyl patches & 2x5mg/ day of Targin.

During a Toowoomba PC Support Group meeting in September last year the guest speaker a medical oncologist, mentioned as part of her discussion that 2% of men with advanced metastatic prostate cancer, who still have their prostate and have had Chemotherapy, radiotherapy and hormone therapy may get a secondary prostate cancer which is commonly picked up by having growth in ones prostate. This type of PC principally impacts the victim’s bowel and urinary systems.

In 2016 I was in Hospital for 8 days, with a bowel problem which was not specifically diagnosed, perhaps radiation colitis or ulcerated colitis, who knows! During mid 2017 I had bladder problems which resulted in frequent trips to the loo, averaging one an hour with normal to weak flow and occasional dribble, caused by an enlarged prostate pressing on my urethra. The end result was having an indwelling Suprapubic Catheter (SPC) fitted. Short term I had blocked catheter problems (unbelievable pain and extremely high blood pressure) bladder infections and urinary tract infection, which resulted in couple of trips to the Base Hospital Emergency Department. Touch wood things have settled down now and only take anti-biotics for 3 days when the SPC is changed which is every 6wks. A Scotsman has to be very careful when wearing his kilt and having an SPC!!!!!!!!!!!!!!!!!!!!

In mid-February 2018 my Palliative Care Consultant and GP. after reading applicant criteria for the national Lutetium 177- PSMA Trial felt that I could be a suitable candidate. Unfortunately this was not to be case as the incumbent had to have had 3 rising PSA over 20ug/L (I had two) and become unresponsive to either of the 2 new super hormone therapy drugs, namely Xtandi (Enzalutamide) or Zytiga (Abiraterone).

Clearer patient guidelines are obviously required as we had a “partially” wasted trip down to Brisbane and the trial co-ordinater remarked that they could not understand why they had so many applicants!

In a 10wk period from January to April 2018 my PSA more than doubled from a low of 13ug/L to a high of 28ug/L and testosterone from 0.5 - 1.2 Prior to attending the Lutetium 177- PSMA Trial acceptance interview the trial Supervisor recommended that I start immediately on Firmagon, which was done on the 28^th. March (2X 60mg) and my 2^nd on 27^th. May.

“Partially” wasted trip, the Oncologist in charge of the Lu177 trail during discussions asked my wife and myself, if we would be interested in having him (Sr Medical Oncologist) look after my cancer care, which after some discussion we agreed. Would necessitate 6wkly visits to Brisbane, but should the travel become too onerous he would refer me back to the Base Hospital Oncology Unit.

Results from my latest CT and NBS taken on 17^th. April are as follows: Boney Metastases’ were wide spread, “too numerous to count” in sacral, lumbar and thoracic spine and across my ribs with continued activity to the right shoulder, sacrum and pelvis, plus new spots in right arm and left side of pelvis. Two Lymph Nodes are clearly metastasised, lower pretracheal and the para-aortic retroperitoneal measuring over 11.4mm and 9.6mm on the short axis

To close the principle soft tissue organs appear to remain clear and my PSA has fallen back to 15ug/L 24^th. April and commenced Xtandi 17^th. April. Still enjoying single malt good red wine, and our 4 magic grandchildren.  Exercise regime is much the same daily walks, occasional resistance training and hydro- therapy once or twice a week, al be it a wee bit slower. The only noticeable side-effect to date is greater fatigue. Early June will see a return visit to the RBWH and a switch back to Zoladex.

If any members have had major hassles from Xtandi or a SPC please give us a call. Contact details in member section.

SlangeVar

David

[Colin Glover]

Thanks David for that detailed story. How some of you guys and girls are able to keep your heads up for so long when the road is so treacherous amazes me. However I may be facing some of those hurdles myself so I'm glad for the references before hand. Wishing you well and bright sunshine on the rest of the journey.

Cheers  Colin

[Kezza2]

Hang in there David.  Glad to hear you are on Xtandi.  I started on Xtandi in January after Zytiga failed.  No noticable side effects. and certainly less than on Zytiga + Prednisone.  I am concerned that the trial co-ordinator for the Lutetium 177 would be so out of touch as to not realise there are literally hundreds of us waiting for it to become available one way or another.  I am not a candidate as I haven't had docetaxel yet.  Good to hear you are in good spirits (single malt ones)

Cheers

Kerry

[Patrick Turner]

7 hours ago, DavidAbrahams said:

100mcg/hr Fentanyl patches & 2x5mg/ day of Targin.

Hi to all, and to David A, who has quite a story to tell.

Up to where you said the above you have had a remarkable run, and I had Targin after recovering from double TKR in Feb 2017. When I stopped the Targin which I took for a month after the op, I had a lousy day where I didn't think I was myself, a feeling of serious undefinable malaise, so I'd become a bit addicted to the T and when I stopped the brain rebelled. It is lucky that I could not get addicted to beer, wine, cigarettes, cannabis, bad wymmin, debt, working for a boss, and 1,001 varieties of other bullshit behaviours. So coming off Targin was  a breeze for me, took 1 day. I got a Gleason 9+9 in 2009, so its 9 years since the horrible diagnosis after biopsy with Psa a mild 6.0.

I'm riddled with Pca, all over the joint, but last week I cycled 336km and only symptoms so far are medical extermination & mutilation of sexuality. I desire female company, but long term ADT and RT just chops off the bits, but the brain of the man goes on unaltered, and I am glad that by 50 I'd junked all the BS ways of being I had at 30, to be a better man, but few noticed. Many precious ideas about life I had at 30 were put in the bin called Duzzen Madder. Its no good desiring female company because all the ones I see don't want anything to do with men, except most nurses, they are OK.

But at present, with PG still there but after total of 101Grey of RT, urinary + bowel function is quite OK.

I get hardons each morning, but the long term ADT shrivels up part of the erectile tissue, makes Rodger fragile, and capacity for pleasure just vanishes.

I need to be a whole lot crooker before they let me have Lu117 which is said to work real well on soft tissue mets.

The authorities and private hospitals and clinic are rationing Lu117, many blokes want it, answer is NO. But for bone mets, Radium 223 is needed, and after all this expensive targeted RT, just how much longer can any man live? a year maybe? 

I'm on abiraterone which is failing after 8 months, Psa 3.3 and rising fairly slowly.

But onco put me on denosumab because they are convinced it helps suppress bone mets. I ain't sure, but will know in a month when I have another PsMa scan, my third. BUT, the deno carries the risk of jaw necrosis and official rate is less than 1% when ppl take this for osteoporosis. But when on ADT, and you have deno, the rate for necrosis rises, and guess what, I have sore jaw bone in my mouth, and a tiny hole in skin that won't heal, and my dentist could poke a probe in and scrape my bone, no pain from that, but now there's dull pain and a red patch. Teeth are OK, and I am seeing an oral surgeon in 10 days, and dead bone is just that, and it basically rots, and can cause bad infection, and if infection is halted, body may dispose of it leaving a crater, but if the condition continues, the whole lower jaw is kaput.

What goes on inside bones is the important issue, and deno seems to upset flow of blood to jaw bone. Good for bone density though, but for everything there's a side effect. deno effect wears off after 6 months, and it is not as bad as zelodronic acid and other things which can have permanent effect on bones, and all have the nasty side effect of causing jaw necrosis.

some 30 years ago I met a bloke who was working to clear bamboo from my mum's garden. He was about 65, and he had only 1/2 his lower jaw, but could work OK, and I think he got that from smoking, and he was way too late seeking medical interference.  

Anyway, I will just have to suck it up and hope there's a fix. I might go to enzalutamide, it is allowed if there are enough side effects from abi, its easy to say there are. But maybe it lasts  only short time. We all react a bit differently to drugs. 

I have had detectable Pca mets for only 2 years, so there's no pain from any of them, although the jaw bother could be a Pca met, Hoo Noze, but I may find out soon enough.

Of course, much focus is on Psa as a marker to tell us how crook we are. But as cancer mutates, it can differentiate, ie, some Pca becomes cancer that does not generate Psa, so PsMa can't show the full extent of where Pca is, so things may be a lot worse than we might like to imagine. When I saw just 2 small mets in upper lymph nodes in my first PsMa scan, I figured there may be thousands, but too small to be seen in scan, and none of these tiny mets have much effect on health or give pain unless they grow big enough, which seems inevitable.

So, an extra glass of shiraz is probably forgivable. And If I go out of the world addicted to pain killers, so be it, such is life as Ned said. 

Keep well, but I for one know that Aunty Destinee is a bitch.

Patrick Turner.

 

 

[Patrick Turner]

5 minutes ago, Kezza2 said:

there are literally hundreds of us waiting for it to become available

Hi all, and to Kezza, gee, how many men are waiting for so very many things to be available? - including a bit more time on Earth.

Maybe 6,000 men die each year in Oz after a long battle with Pca. Many would be candidates for Lu117 trial, but trials usually don't need the numbers who are begging for Lu117.

If you want Lu117 now it seems you still have to qualify to be able to buy it, and be on docetaxel, and Lu117 is about $10,000 for each infusion. Many good reports so far and maybe you need 4 infusions so you need to spend $40,000 which may give you 2 years more life. "maybe" is a silly word, so you can spend that much in vain, and methinks the company providing Lu117, based in Perth can see all these fellows a coming, "fix me!" they yell, and they probably make a fabulous profit, but if you can't pay, you can't have it, and it'll be years before Lu117 is easy to get and funded by Medicare, and the process may be all patented by USA based bizness ppl who just want money because money is what dey want.

I once offered myself to take part in a trial of Ipertasib, and initially I seemed a good candidate, and I traveled 300km to see the docs. 

A doc of 35 talked to me, then said they'd let me know. But later they said I could not be included, without saying why. Wild goose chase. But I bet the blokes in many trials are chosen to be most likely to get a positive result because all these ppl doing trials want positive, to get funding to make the progress. Selective intake bumps up the success rate which may not ever be reached when the drug becomes available after the funding is there for it. 

So Polly Tichanz are reluctant to fund fast enough with evermore expensive treats which come from rapacious US ppl. 

Having said that, there has been some advances since my diagnosis in 2009, and maybe it adds up to +4 years had things just stayed the same. Its not really worth figuring that out, you is alive and well one day, then things change, and docs ain't magicians.

Patrick Turner. 

 

[whatmeworry1941]

We have a Test Match for Breast Cancer yet nothing for Prostate Cancer...

[Chask]

David, we have a couple of things in common, I am also a Scotsman and I have an SPC.  From there it differs.  I am only 5 years along the “interesting journey” and have only just become metastatic (one met on the scapula) and castrate resistant.  I had a prostatectomy and adjuvant radiation in 2013.  Then 12 months Zoladex and a 12 month holiday before the PSA started to rise again (quite quickly).  

 

 My met was detected after my 2nd PSMA scan and is not visible on CT scan, so still very small.  My current PSA is only .23 having risen from .09 just 3 months ago and while on Zoladex and Cusodex.  

 

Won’t go into all the details of how I came to need an SPC, but I have had it for over 3 years now and expect to have it for the rest of my life.  While it is inconvenient and occasionally uncomfortable it is something I can live with and I have had no major problems since initial installation.  It is certainly preferable to the massive incontinence I experienced previously.  Mine is changed every 5 weeks and for me that is the worst part.  I experience a lot of pain when the old catheter is removed but that only lasts for seconds.  The community nurse who normally does the change is a gem and she does all she can to minimise my discomfort.  I don’t take antibiotics because I have previously had a major infection called Clostridium Difficile commonly known as C-Diff.  C-Diff is known to recur and that comes about when the “good” bacteria in your gut is depleted and of course that happens every time you take antibiotics, so that is something I avoid as much as possible.

 

My Oncologist has me on 6 weekly PSA checks to monitor the need for additional medication.  Although Abiraterone is not available via Medicare unless you have had Chemo, he has indicated that there may be a possibility he can get some discounted supply from the pharma company.  If not, then I guess I am in line for Chemo.  

 

I am also having some genetic testing done to see if some of the PARP inhibitor drugs like olaparib might work.  My mother had cervical cancer and both my sister and daughter have had breast cancer, so I would appear to be a potential candidate.

 

In the meantime I feel terrific.  I walk 3 to 4 kms every day, do light weights and play golf a couple of times a week.  The Hormone treatment hasn’t really affected me too much.  No libido and lost some strength, but  not much loss of energy and no depression which seems to affect some others.

 

I wish you well on your “journey” and hope some further treatment options open up for you.

 

Lang may yer lum reek,

 

 Chas

 

 

 

[pauldhodson]

David, Thanks for the update. I have had lots of urinary issues lately and my Oncologist thinks it may be Prostatitis (in addition to MCRPC). Have you considered getting Lu177 privately? I believe it cost $9,600/ infusion and requires 2 to 6 infusions. I'm in the same boat as you (at age 51) I'm going through the pre-trial assessments for Lu177 but as my PSA hasn't been over 3.6 μg/L I'm unlikely to be accepted (I'm also responding well top Xtandi). Cheers Paul.