On the Chemotherapy Doorstep

[Guest PaulHoskins]

TOMORROW COUNTS

It was 9 April 2008 when, with a PSA of 19.2, my Urologist performed a DRE (Digital Rectal Examination) and confirmed I had Prostate cancer, clinical stage T2.

This was the result of a Urologist referral after visiting a new GP (General Practitioner) as my current GP was on holidays.

This whole unfortunate process started in June 2005 when, at age 58 and living in Buderim – Queensland, I suffered a heart attack and finished up at the Sunshine Coast Private Hospital. An Angiography confirmed three coronary arteries were restricted, one a 95% blockage and the other two 50% and 40% blockages. I was transported, via ambulance, to the Holy Spirit Private Hospital, Brisbane, where I had an Angioplasty and a stent was inserted in the 95% blocked coronary artery.

With the requirement to exercise I found the hills of Buderim too steep and we decided to sell up and move to a suburb that was conducive to walking. We finished up at Little Mountain, near Caloundra and, due to the move, I changed my GP.

In September 2006 I presented to C-GP#1 with lower back pain and the subject of “have you ever had a PSA test” came up. I said No as I had spent the majority of my working life, with Rio Tinto, in remote sites in the North West of Western Australia, Bougainville – PNG, Sangatta – Indonesia to name a few. I had no knowledge of the PSA test and all that it revealed.

I was sent for a PSA test and a Renal/Prostate Ultrasound. The ultrasound came back with a “Prostate appears slightly prominent” result and the PSA came back as 9.0 (October 2006). The C-GP#1 said the “ultrasound looks normal” we will recheck the PSA.

The next month (November) the PSA came back at 9.0 and C-GP#1 said “we’ll check it in two months”.

In February 2007 the PSA came back at 8.5 and C-GP#1 said “we’ll check it in six months”.

In August 2007 the PSA came back at 11.9 and C-GP#1 said “we’ll check it in six months”. He also commented that “The probability of prostate cancer increases with the PSA level. Levels rise with staging and may reach several thousand in metastatic disease”. I later realised he was only repeating the text that appears at the bottom of the blood test result.

In March 2008 my PSA was 19.2.

I should note that from October 2006 until March 2008 I had visited C-GP#1 on nine separate occasions for my Familial Hyper-cholesterolemia (Lipitor then Crestor and then Lipidil), for my Rheumatoid Arthritis (Mobic and Methotrexate), my Achilles tendon Xanthomas (Progout and Colgout) and Asthma (Seretide Accuhaler).

So, on 28 March 2008 I presented to C-GP#1, with my PSA at 19.2, and he was on holidays so I saw C-GP#2.

On seeing C-GP#2 he immediately filled out a GP Management Plan which he said was for “my Complex & Chronic Medical Problems” and gave me three (3) referrals one for a Dietician, one for a Chiropractor and one for a Urologist.

I presented to the Urologist on 9 April 2008, he reviewed my Medical and PSA History and said “You should have come here sooner !”. He performed a DRE and found a lump on the left-hand side of my prostate, which confirmed I had Prostate cancer. He said it is currently clinical stage T2 (the tumour can be felt (palpated) on examination). We need to do a TRUS (Transrectal Ultrasonography) & Biopsy of your prostate.

The earliest date for the TRUS & Biopsy was one (1) month later on the 8 May 2008. The results indicated that the tumour was on the left hand side of the prostate as the six (6) samples from the right side were clear and of the six(6) samples from the left two (2) were clear, two (2) indicated 11mm of tumour in the 15mm sample and two (2) indicated 13mm of tumour in the 15mm sample.

The Gleason score was derived at 3 + 4 = 7, with a prognosis of Aggressive (5 – 10 years not treated).

I talked to the Urologist about the next steps and we talked about surgery or radiation and I indicated that I would take the radiation path rather than surgery. The Urologist told me we still had to determine if the cancer was contained within the prostate and I would need to have a CT Scan of my lower and upper abdomen and pelvis, a full body bone scan and a MRI of my spine and pelvic region. After these were performed we could determine the path forward.

First the CT Scan on 2 Jun 2008 indicated “No focal pulmonary lesions are identified. No enlarged mediastinal, hilar or axillary adenopathy. Prostate is enlarged and is seen to indent the bladder base posteriorly.”

Secondly the Bone Scan on 4 June 2008 with a result that changed my life forever !

“There are multiple areas of irregularly increased tracer uptake noted. There is a prominent focus in the upper sacrum. Multiple abnormalities highly suspicious for scattered metastases.”

Metastases ? Metastases ? What are Metastases ? I went home and consulted Dr. Google.

“Metastasis, or metastatic disease, is the spread of a cancer from one organ or part to another non-adjacent organ or part. The new occurrences of disease thus generated are referred to as metastases (sometimes abbreviated mets). It was previously thought that only malignant tumor cells and infections have the capacity to metastasize; however, this is being reconsidered due to new research.”

Do I have another cancer ? Lung Cancer ? I had no idea what was happening and commenced into a depressed, frustrated and sad state.

I went back to the Urologist on 11 June 2008, the day before my 61st birthday, to discuss the Bone Scan result. His talk centred on “the cancer has left the prostate and entered the blood stream”, “EBRT currently not viable due to Bone Scan findings and Hormone treatment the desired treatment”. A MRI was to be performed and the result reviewed. My cancer clinical stage was updated to T4M1b (The tumour has invaded other nearby structures, the cancer has spread to bone).

I had been putting off the MRI as I suffer from claustrophobia, the Bone Scan freaked me out, and I knew the MRI would be extreme. The Nambour Hospital performs sedated MRI’s once a month so I booked in for 26 June. Prior to sedation the nurse asked me to accompany her to the MRI room and talk to the Radiologist. I was shown the MRI, the headphones and the eye mask, asked to put them all on and lay down for a test drive to see if sedation was required. After a couple of rides in and out of the tunnel I came to the conclusion that I probably could do it without sedation. The short story is I did, but had a couple of freaked out moments !

The MRI result, although expected, was a decidedly bad result, indicating “Multilevel vertebral body metastases (C4, T1-T3, T8-T10), most pronounced at the S1 (Sacrum) level where there is early posterior epidural soft tissue extension. Also metastases at the posterior 11th and lateral 5th ribs on the LHS, the anterior iliac crest and the greater trochanter of the left femur”.

After the MRI my lower back pain increased to an 8/10 and my nose bled for a day or two.

My Urologist sent me straight to the Radiation Oncologist and on 1 July 2008 we commenced immediate Androgen Deprivation Therapy with a Zoladex 10.8mg Implant and Cyproterone Acetate 50mg (Androcur), two (2) per day for 25 days. I was scheduled for EBRT to relieve the pain in my sacrum and this started with a CT Scan, with physical measurements of pelvic area, and tattooing to assist in the 3D image production for the EBRT.

On the 10 July I started a series of ten (10) daily EBRT sessions focusing on the S1 Sacrum spinal area. The Cyproterone Acetate tablets had reduced the pain to low levels.

Prior to my next Urologist visit on 13 August I had two (2) PSA readings taken. My PSA was rising rapidly as the 8 August reading was 57.0 and the 11 August reading was 62.0. I was immediately issued with Cosudex 50mg and instructed to take one (1) per day to complement the Zolodex. I was referred to a Medical Oncologist.

It was at this time (August 2008) that I got angry and engaged solicitors to take out a Medical Negligence claim against C-GP#1. My main aim was to ensure that this doctor did not harm any other patients given the breach of his duty of care in my case. A submission, prepared by a Melbourne Director of Urology in April 2009, confirmed my terminal cancer with an expected life span of four years (April 2013).

On 2 September I had my initial consultation with the Medical Oncologist where we discussed my current situation with the cancer, medication and disease markers (PSA & Pain). A further review was scheduled on the receipt of forthcoming PSA results. Two (2) weeks later the Medical Oncologist telephoned to say the PSA levels had fallen and will see me again in November (18th).

I went to the Urologist on 19 September and was told the PSA levels were 26.0 on 5 September and 22.0 on 15 September. He indicated that the ADT2 was working and advised me not to play golf, after a question by myself, due to the number of bone metastases on my spine. Due to these vertebral metastases I was in danger of spinal cord compression. Another part of my life stolen !

In October I went to C-GP#2 for my second Zolodex implant and my current PSA level was 11.1, and by the end of 2008 my PSA had dropped to 2.8.

During 2009 my highest PSA reading was 1.8 (in January) and the lowest was 0.33 (in December). I continued with Zolodex Implants every three (3) months and daily Cosudex 50mg. In July the Urologist performed a DRE and reported that “the tumour does not appear to have grown”. In August I was forced to change GP’s as C-GP#2 worked at the same Medical Clinic as C-GP#1 and due to my ongoing Medical Negligence claim I was expelled from the clinic ! So much for the Hippocratic oath ! We had moved house in March 2009, as I was no longer able to maintain our acreage property at Little Mountain, and now resided at Kawana Island. In August 2009 I presented to M-GP#1.

After eighteen (18) months on ADT2 my side effects included impotency, body hair loss, hot flashes, insomnia, metabolic syndrome and foot neuropathy.

During 2010 my highest PSA reading was 0.55 (in November) and the lowest was 0.29 (in March). I continued with Zolodex Implants every three (3) months and daily Cosudex 50mg. In January the Urologist performed a DRE and said “the prostate is soft and the tumour does not appear to have grown”. In February a GTT (Glucose Tolerance Test) result was high at 13.5 (normal is 7.0) which was indicative of Diabetes II. Although I was not medicated I did attend the three (3) hour presentation on Diabetes care and Clinical Dietician recommendations, at the Sunshine Coast Diabetes Centre, in April.

In July 2010 we finalised the Medical Negligence claim against C-GP#1 and in September all of the relevant information was sent to the Australian Health Practitioner Regulation Agency (AHPRA).

Also in July I changed GP’s as M-GP#1 moved to another practice and I commenced seeing M-#GP2. I presented to M-#GP2 in September with back and stomach pain and a blood test revealed my CRP (C-reactive protein) was elevated at 79 (normal 0-10) indicating an acute infection or inflammation. A PSA test and Bone Scan were scheduled. The PSA level was 0.34 and the Bone Scan, on 15 November, had a good result indicating “low level uptake in the upper sacrum, much improved from previously. There is faint focal uptake in T8, T9 and T10, and the posterior left 11th rib, also less avid than previously. No new lesions seen to suggest hormone resistant metastases. No fractures or other bony pathology”.

In October AHPRA sent correspondence indicating they were following up on our issues with C-GP#1.

After thirty (30) months on ADT2 my side effects now included gynecomastia (man boobs) and diabetes mellitus II.

The year 2011 started well with a January PSA of 0.49 and I was now having three (3) monthly PSA tests, scheduled just prior to my Zolodex 10.8mg implants. April’s PSA was elevated at 1.20, which was calculated as a 2.21 months PSA Doubling Time (PSADT). My Urologist telephoned me on 12 May in reference to the PSA rising. His advice was to get a new PSA reading soon & notify him of the result. The issue was the PSADT, which he uses as a predictive factor in prostate cancer recurrence and a PSADT of less than 3 months is a marker for “extremely high risk for adverse clinical outcomes.”

My PSA result in May was 1.80 (PSADT of 2.36 months) and my July PSA was 2.3 (PSADT of 2.65 months). I saw the Urologist on 20 July and he indicated that the PSADT of 2.65 months indicates an aggressive cancer and may signal that I have now become hormone resistant. I was advised to stay on the ADT2 regime of Zoladex/Cosudex. He said the main concern is that my blood may not support Chemotherapy due to my continued low platelet levels. He told me to start investigating Medical Trials for Advanced Prostate Cancer and look at the possibility of participating in a clinical trial.

He was going to confer with the Medical Oncologist. I should stop taking Cosudex in three (3) months and have a bone scan at my earliest.

After researching the internet I sent an e-mail, on 21 July, to the Mater Medical Research Unit with all my medical history enquiring if there were any trials that may be suitable for me to participate in. I received a reply on 1 August indicating “unfortunately at this stage we don’t have any trial running for patients with prostate cancer”.

I also sent the same e-mail, on 21 July, to Dr. Ian McKenzie at the Australian Prostate Cancer Research Centre, Queensland in reply to a internet request stating;

Do you have Prostate Cancer?

If you have prostate cancer and are interested in assisting with research, the MDT Team would like to hear from you.

Are you interested in assisting with research?

If you think you fit into any of the following groups:

•You are or will be receiving hormone therapy long-term

•You are receiving short-term hormone therapy prior to a course of radiotherapy

•You do or do not have metastases

Then we are interested in hearing from you!

I did not receive a reply !

I was looking for clinical trials not as a martyr but just a man trying to survive !

I had a Bone Scan on 22 July 2011 with a result of “There is irregular uptake in the upper sacrum, unchanged from previously. Mildly increased uptake in the T8, T9 and T10 vertebrae is seen and posterior left 11th rib is noted, of similar intensity to the prior study. There is apparent mildly increased uptake in T5 and T6 on the planar views. No significant change in the scan appearances over the past 8 months. Stable metastasis in the thoracic spine and sacrum. No evidence of new skeletal metastases”.

My Urologist telephoned me on 27 July regarding the latest Bone Scan Results. He will take the information to his meeting with the Medical Oncologist on 2 August to discuss Chemotherapy and the use of Bisphosphonates.

I presented to the Medical Oncologist on 9 August and was told to stop taking Cosudex now and I was to start Zometa (Zolendronic Acid) Bisphosphonate infusions in September on a four (4) week schedule. It was stressed the importance of having a thorough dental examination first, before starting Zometa, due to the rare side effect of ONJ (Osteonecrosis of the jaw) associated with bisphosphonate therapy.

At my visit to M-GP#2 on 12 September my blood test indicated a high Random Glucose level of 11.5 (normal 3.6 – 7.7) and I was prescribed diabex xr 500mg (Metformin hydrochloride) tablets to promote insulin production.

On 13 September I sent an e-mail, with all my details, to Robyn Medcraft who was the contact person for the MDV3100 Clinical Trial at the University of Queensland. I received the Trial information in the mail on 20 September and was instructed to read, review and sign the waivers. On the 22 September I received a return e-mail stating “unfortunately you have received EBRT on bony mets in your S1 Sacrum, as per the protocol of this trial you are only eligible if you have only received EBRT to your Prostate.” I was disappointed as up until this stage there had been no mention of EBRT in any of the trial documentation.

Rejected because I had EBRT on my sacrum, I wonder if there is any truth to the rumour that the people running the clinical trials hand pick their participants !

My first Zometa Infusion took place on 14 September. I had checked with Dr. Google who indicated that “Zometa is used to prevent skeletal fractures in patients with cancers such as multiple myeloma and prostate cancer, as well as for treating osteoporosis. It can also be used to treat hypercalcemia of malignancy and can be helpful for treating pain from bone metastases.”

The IV plug was inserted in the back of my hand and I received a saline flush and then the 15-20 minutes it took to infuse the Zometa, followed by another saline flush. I was told to make sure I drank two (2) litres of water after the infusion as Zometa is rapidly processed via the kidneys and can cause problems if not flushed out. I awoke the next day with severe chest pains that I attributed to the Zometa infusion and hoped that this was only a one off reaction.

In Sept we received written notification from AHPRA that C-GP#1 had, in March 2011 “entered into a Schedule of Undertakings to undergo re-education in clinical assessment, diagnosis and treatment of prostate cancer with particular focus on PSA level interpretation” which was completed in September 2011.

I felt, at the least, I had saved others from ending up in the life situation I now found myself !

My visit to M-GP#2 on 10 October was the point when I would find out my latest PSA reading. It was 6.4 indicating a PSADT of 2.36 months, not a great result. My thoughts turned to January 2012 and a possible PSA of 12 or 14.

My second Zometa Infusion took place on 12 October and there was no problem with the infusion except that the next day I awoke with bad pains in my kidneys, but they passed as the day wore on.

The discussion at my next visit to the Medical Oncologist, on 17 October, centred around Hormone Resistant Metastatic Prostate Cancer, the impending need to start Chemotherapy and the possibility of participating in a clinical trial.

I explained my unsuccessful clinical trial attempts to date.

On the 9 November I presented to the Urologist where he performed a DRE and found that “the prostate is hard, mainly on the left hand side”. We discussed the future options including the reintroduction of Cosudex, Chemotherapy and Drug Trials. I asked him what he thought my current prognosis was and his answer was “twelve (12) to twenty-four (24) months”.

My third Zometa Infusion took place in the afternoon after leaving the Urologist and there was no problem and no pain afterwards.

My thoughts were revolving around the next PSA result in January which was expected to be around 13.0 and then my life would change dramatically as chemotherapy is on the table – will my blood work handle the chemotherapy ?, am I going to need transfusions before chemotherapy ? More side effects to deal with ? So many issues !

With Chemotherapy in mind at my next visit to M-GP#2 we discussed my low blood platelet count and the effect of Methotrexate and Chemotherapy. The decision was made to stop Methotrexate and reintroduce Salazopyrin (Sulfasalazine 500 mg) to treat my Rheumatoid Arthritis.

Against all odds my PSA result, taken on 30 December, was 1.40. A Hallelujah moment !

With the lower than expected PSA my thoughts ran wild. Was it a sample error or some other factor ? I had altered my medication regime over the past few months, starting Metformin and Zometa in September and stopping Methotrexate in November. Metformin has been reported as having “a direct action on cancer cells is suspected. Indeed, metformin exhibits a strong and consistent antiproliferative action on several cancer cell lines, including breast, colon, ovarian, pancreatic, lung and prostate cancer cells”, and Zometa “also has some anti-cancer effect on the cancerous cells in the bone, which helps reduce the growth of the cancer in the bones”.

After forty-two (42) months on ADT my side effects include impotency, body hair loss, hot flashes, insomnia, metabolic syndrome, foot neuropathy, gynecomastia (man boobs) and diabetes mellitus II.

So 2012 began on a good note with a low PSA. In January I had Bone Scan number 4 with the result of “New foci uptake in the medial left pubis and the hyoid bone. Low level uptake in the spine at known metastases in T4-T5, T9-T10 and the L5/S1”. My GP and Medical Oncologist had no answer for the low PSA, whereas my Urologist said “it could be an Androgen relapse”.

Amazingly for the rest of 2012 my highest PSA reading was 1.50 (in October) and the lowest was 0.99 (in April). I continued with Zolodex Implants every three (3) months and Zometa infusion every four (4) weeks until April when the infusions were rescheduled to a six (6) week cycle.

I started 2013 with a Bone Scan in January with results showing “A new small discrete focus of moderately intense osteoblastic (bone) activity is seen in the mid sternum and a stable osteoblastic lesion in the left pubis medially. Mild hyoid bone uptake and low level uptake irregularly throughout the thoracic spine are unchanged from one year ago”. In April 2013, I had my 20th Zoladex Implant and my 17th Zometa Infusion.

My situation worsened over the remainder of 2013. My PSA was steadily rising since July 2013 (6.80) and October 2013 (13.00) and January 2014 (24.00). The PSA Doubling time was near the critical 3 month doubling time.

On 30 December 2013 I had visible blood in my urine and my doctor had me perform a UTI (Urinary Tract Infection) test. It showed no infection, only blood, so a CT Scan of my abdomen and pelvis was performed with the following result; ‘There has been a significant increase in size (+20mm), irregularity and extension of the prostatic lesion with extension outside the capsule, into the bladder, and an enlarged lymph node (9mm) seen in the left pelvis. There is a new partial obstruction of the left ureter and kidney.’

I commenced EBRT (External Beam Radiotherapy) on Tuesday 18 February 2014. At the pre-EBRT planning session, on the previous Tuesday, I was informed that the radiotherapy would be directed at a large area of my abdomen to ensure that my prostate, bladder and compromised lymph node would be radiated. There were ten (10) EBRT sessions carried out over twelve (12) days. The worst side-affect was the diarrhea, which started on the seventh (7th) day of radiation, Wednesday 26 February, and continued for six (6) weeks.

On Tuesday, 8 April, I presented to my GP for my 24th Zolodex implant, which equates to nearly six (6) years on ADT. I am told I will stay on ADT until I die, due to the aggressive nature of my cancer. 

On Thursday, 17 April, I presented to my Medical Oncologist and was told that my latest PSA result was 21.00, we expected it to be lower after the EBRT.

Due to the higher than expected PSA a bone scan was performed on Tuesday, 3 June. This was my 7th bone scan over the past six years. The scan showed "Progression in the size of the lesion in the upper sternum. A new lesion is seen in the medial right pubis and there has been mild progression in the lesion in the left pubis. There is low level uptake about the L5/S1 intervertebral disc. Focal uptake is once again noted in the hyoid bone in the midline, unchanged from previously."

My PSA has remained the same at 23.00 and the bone pain, in my thoracic spine, increased significantly. After seeing the Oncologist I had my 27th Zometa infusion.

Resulting from all of the above I start chemotherapy (Docetaxel & Prednisolone) on 10th July.

[tonymax]

I have been on continuous hormone treatment for 11 years now following an unsuccessful radical.

Have been with the same medical oncologist for all that time.

PSA now risen to 65 and Gleason 8.

No radiation or chemotherapy to date.

CT scans now reveal tumour in my right pelvic lymph node.

Rest of CT scan and bone scans still clean but undoubtedly microscopic disease in many places.

Radiation to lymph node is now an option.

Otherwise still healthy although on Metformin for diabetes last 2 years.

Have just been accepted on PLATO trial and start on Enzalutamide next week.(no placebo)

This trial splits into two arms down the track - Abiraterone and Abiraterone/Enzalutamide.

Radiation is plan B.

 

My comments on your situation

 

1.Chemotherapy followed by Abiraterone on PBS is option 1

2.PLATO trial is still recruiting and would give access to Enzalutamide (Xtandi) and Abiraterone (Zytiga). Exclusions do not seem to include previous radiation but do include severe cardiovascular disease - not sure how your earlier heart problems would be on this.

3.Your disease seems to feature bone mets and there is a new treatment called Alpharadin (Xofigo) that has been shown to give benefits there. There are 23 Alpharadin clinical trials of listed on clinicaltrials.gov worldwide and 9 of these are currently recruiting.

 

I am not a doctor and cannot give medical advice but would suggest you talk to your doctors and get as clear a picture as possible on options available to you, any constraints based on sequencing order and prioritisation of bone mets versus soft tissue mets. You may have already done this of course.

[alanbarlee]

G'day Paul (H),

 

I generally agree with Tony's summary of possible options - except that I would prioritise them in the reverse order.

 

A question: have you had serum testosterone tests to confirm that you are actually castrate-resistant (ideally <0.7 nmol/L, max 1.7 nmol/L)? You might infer that you are from the serial PSA rises, but an assay might be needed to to strengthen your elegibility for a clinical trial. 

 

Given your current and historical issue with fairly extrensive bone mets, and in the context of a fairly low but now rapidly-rising PSA, an Xofigo (=Radium-223=Alpharadin) clinical trial would seem to provide a likely reprieve - at least. Depending on the trial, this might be combined with, or followed by, continued Zoladex and/or Zytiga (=abiraterone) and/or Xtandi (=enzalutamide).

 

A search of Xofigo clinical trials that are currently recruiting in Oz (from March 2014) yielded two possibilities, viz

NCT02023697 (dose trial), recruiting at Westmead (Sydney) and also in Melbourne & Adelaide, but not Qld. This would be my choice, since you would be sure to get Xofigo, irrespective of the experimental arm.

NCT02043678 (combo trial with Xtiga, recruiting at Darlinghurst (Sydney) and also in Melbourne & Adelaide, but not Qld. This would be my second choice, since  you would have a 50% chance of Zytiga only - not a bad option, but in my (unqualified) opinion, not as good as the ideal (?) combo arm in this trial, nor as good as any of the arms in the previous trial.

These trials list a maximum lymph node size of 30 mm, so your slightly enlarged node should not be a problem. However, prior chemotherapy treatment (e.g.Taxotere/docetaxel), which is planned for 7/7, would disqualify you, so you might want to chat with your medical oncologist about the above possibilities ASAP.

 

Tony's suggestion about the 'PLATO' trial (based on Xtandi - a powerful anti-androgen with an excelllent trials track record) - is also well worth investigating, and raising with your medonc at the same time.

 

Please get in touch if you run into any problems investigating or interpreting the above, prior to reviewing your treatment strategy with your doc.

 

Best of luck!

 

Alan         

[tonymax]

I generally agree with Alan's comments.

Just to clarify my options were in no particular order - I should have mentioned that.

If bone mets are the main worry then presumably Alpharadin may be priority 1.

Re PLATO trial it has one recruiting site in Qld - Milton 4064

 

With PSA 65 and pain from my right pelvic area as I type this I cannot afford to muck around with placebo trials.

I need definite action if possible.

Ideal would be to radiate lymph node first then treat residual with Enzalutamide/Abiraterone.

Unfortunately would not then qualify for PLATO and would run out of time.

So have to do in reverse order - I am lucky (no placebo) PLATO is available to me now.

Trying to match your disease state with the trial requirements within the recruiting window is a bit of a nightmare

Worth checking though - it may give extra options for treatment.

 

Tony

[Guest PaulHoskins]

Since my first diagnosis (April 2008) and subsequent Bone Scans I have had twenty (20) bone metastasis identified.

Upper Body (Hyoid Bone, Mid Sternum, Left Posterior Rib 5 & 11), Spinal (C4, T1-T6, T8-T10,L5,S1), Lower Body (Right Pubis, Left Pubis, Left Illiac Crest, Left Trochanter).

Current bone pain (5/10) is centred on my thoracic spine and controlled with Targin, Endone & Panadol Osteo.

The aim of doing chemotherapy is to slow the progression & pain, zap a few metastasis & pain, and open up the availability of the new post chemo drugs.

[Guest PaulHoskins]

I started chemo (Taxotere & Prednisolone) on 10th July 2014. I had six (6) sessions, three (3) weeks apart and finished on 23 October.

 

Luckily (great word) my chemo side effects were only minimal; loss of hair, furry mouth, mouth ulcers (until I started sucking ice during chemo), headaches, tingling hands & feet, finger & toe nails lifting, watering eyes and skin rashes. No nausea or diarrhoea (the luckily part).

 

I recently had a Bone scan (#8) and a CT scan of my abdomen & pelvis (#4). The results, although reasonable, were probably less than we (Oncologist & I) expected. It appears the disease has been kept stable during the chemo period, with possible improvements over the next months as the body recovers.

 

The Bone scan indicated "there has been minimal change in the scan appearance since the prior scan study five months ago. A possible small new metastases is seen in the sternum but there is no evidence of metastatic involvement in the spine to account for the current symptoms, other than new focal uptake at T9/T10 on the right. The metastases in the sternum and pubis are essentially unchanged".

The CT scan indicated "an increase in the extent of sclerotic disease with deposits within the pubic symphsis, the sacrum and multiple vertebrae. Decrease in the volume of the prostate. There are now bladder calculi".

 

My blood test indicated a PSA of 19.0, unchanged from the September result. My Zometa infusions have been extended to a twelve (12) week cycle.

 

We are now back to the waiting game; waiting for the PSA to rise or waiting for an increase in bone pain !