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2020 Health Update from Popeye

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Popeye

LATEST UPDATE FOR LEE GALLAGHER aka Popeye

23/05/2020

Well its been a while since I have updated my travels through treatments for my disease. Its been a bit of a trial over the past year but for anyone interested here we go.

Back in 2018 my PSA figures were doubling every four months although they were still low they had gone from undetectable to 1.6 so I had a Gallium PSMA scan that reported three areas of interest one near my rectum, one near an area adjacent to my lower spine and one near my left ureter. My urologist recommended to me to re-start ADT with Firmagon injections every 28 days. I did this for the next year and my PSA fell to 0.2. My PSA began rising slowly again in July 2019 and reached 1.5 in January 2020 and he recommended that I should now be handed over to a medical oncologist here in Mackay.

You might remember that I had salvage surgery back in 2014 where my bladder was removed along with the remains of my prostate, appendix and lymph nodes. I had been given a stoma and urostomy bag to replace the bladder. About six months after this surgery I suffered what is called a parastomal hernia. In February 2020 I suffered a bowel blockage when this hernia became strangulated and was admitted to the emergency department for emergency surgery which thankfully saved my life. Just after I was released from Hospital I had an appointment with the medical oncologist here in Mackay and we discussed future treatments ( Chemo, Zytiga and enzalutamide) she also had me start cosodex and continuing the firmagon injections. The oncologist also arranged a PSMA scan here in Mackay but it was a Fluoride based one slightly different to the Gallium one I had in Townsville in 2018. The scan returned results confirming mets to two of my ribs, rectum wall and weirdly to my left arm?

A surprise present to me at this time was a swelling on my cheek on up to the top of my nose which my GP thought might be an infection in my tear duct and I was on anti -biotics for a period that had no effect. The swelling continued to grow and a CT scan returned a finding of a cancerous tumour in the sinuses in this area. The oncologist organized for an MRI and postponed chemo for the PCA. The MRI confirmed the tumour in the sinuses and concluded that PCA met could be a possibility however a separate type of cancer is suspected possibly linked to radiation treatment I had on my nose back in 2013. I am faced with having a biopsy but seemed to have fallen through the cracks a little as they are deciding how to do the biopsy either internally or externally and two more weeks have gone by.

I have had talks with an ENT specialist and treatments for this type of cancer are a bit rough to say the least either / or combined radiation and surgery. Radiation treatment may be crossed out due to the level of exposure I had with the earlier treatment in 2012. Surgery may involve losing the eye, nose and/or top jaw bone with re-constructive surgery.

I have had time to digest all this and it is likely depending on the biopsy (when and if it gets done) to drop all further treatment entirely and head off to palliative care. I will update this further when things become a little clearer.

Lee aka Popeye

PS. My latest PSA is 2.6

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alanbarlee

Wow, Lee - that is some story! I'm so very sorry that you're having to struggle with with an apparent Hobson's choice in considering treatment options for the sinus met. That must be extremely hard for you.

 

I wouldn't be happy about hanging about for any more time for a  biopsy in Mackay - two weeks is already way overdue.

 

As a complete amateur, I wonder whether aggressive treatment of the sinus met with laser, cryotherapy or high-intensity ultrasound might be a possibility? I guess surgery is an unattractive option from what you've been told - but who knows what a team of top experts might propose.

 

Could you urgently seek out some really expert multi-disciplinary opinions from the top teaching / research hospitals in Brisbane (Princess Margaret?), Sydney (St Vincents?) or Melbourne ( Peter Mac, Alfred). Jim Marshall and Tony Maxwell would have good suggestions for QLD and NSW. Your medicos in Mackay should be supportive in quickly seeking out the best options along these lines. Hopefully your travel options won't be limited by Covid-19 border issues: you might need a compassionate authority to travel and return.

 

All of this really pushes your PCa into the background - which for now shouldn't cause too much anxiety at such a relatively low PSA, There's enough for you to deal with without sweating further on that one just now.

 

Very best wishes, Lee. We'll dwell on hearing some positive news when you have some!

 

Alan

 

      

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Popeye

Thanks mate I will have to see where it is going

 

 

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John44

Very sad news Lee. I’m sure all will keep you in their thoughts and prayers.

 

I agree with Alan that you should seek alternative opinions/options and as soon as possible.

Perhaps you could ask your doctor for a referral to the Royal Brisbane and Women’s Hospital on the inner north of Brisbane or the Princess Alexandra Hospital on the south side of Brisbane. Both have excellent oncology services and from my experience offer efficient and effective services in a caring manner. Also, your doctor or ENT specialist, in organising your referral, should be able to make an appointment for you.

 

Further, don’t be shy in pushing your case. Sometimes doctors, under patient overload, unwittingly don’t treat urgent cases with the priority they need. If you don’t ask for the earliest possible appointment you won’t get it. So polite yet firm requests and enquires can often promote your cause.

 

We wish you the very best and hope you do find the best treatment path without any delay.

 

John

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Popeye

Thank you John and Alan: I will see how this week pans out seems like the doctors are avoiding me lately ( I also had a cancellation from the visiting radiation oncologist from Townsville for the coming week) The problems began with first having antibiotic treatment then having a CT scan that took a week to organise, then a visit back to the GP for results, then a referral back to the oncologist (another week) then a referral for the MRI another week, then more time until I hear from the oncologist who refers me to the ENT doctor who I see a week later. Time just seems to slip away so easily hanging about for scans and Dr appointments. Still I will wait the week out again to see what evolves otherwise I will head back to my GP to see what else we can do. 

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Patrick Turner

Hi Popeye,

If your latest Psa is only 2.6, then its not such a huge worry. If it was 26, or 260, or 2,600, yeah, a bit more to worry about.

If I were you I would seek to get another PsMa scan and get evaluated for Theranostic treatment from Theranostics Australia who I think have a clinic in Brisbane. I think you have too many spots of Pca cancer that has spread to unusual places that any surgery or beam RT might be a waste of time and dough, and leave your body in a terrible mess.

I had Psa of 25 after chemo failed to reduced countless mets in bones and lymph nodes in late 2018.

I had 4 infusions of Lu177 eight week apart and Psa went to 0.32 a year after beginning Lu177, but I did begin taking Xtandi after 3rd Lu177 infusion.

But Psa is now rising again, maybe 5+, but I have NO symptoms and at age nearly 73, I am cycling 200km per week on good weeks with weather permitting. I feel very well.

At present, I think Xtandi has stopped working, and ADT monthly injections stopped working years ago. In 2016 had Cosadex, worked for 6 months, then Zytiga, worked for 8 months.

My original diagnosis was too late with Psa 6.0 in 2009, but I had Gleason 9, and probable spread everywhere, but no scans could see any mets until 2016, well after failed RP in 2010 and beginning of ADT.  

I may have to get more Lu177, if my next and 7th PsMa scan indicates Lu177 may work to give me more time before I try more chemo which I think would fail, leaving me with palliative care and death within 2 years.

Lu177 costs about aud $40,000, for 4 infusons. But Xtandi which helps the Lu177 work better is free under PBS.  Systemic treatment is justified if you have only several places of active Pca and where local treatment with surgery is going to make a mess of your body.

You are second man I know who had bladder removed, and ureters brought to stoma for a bag, but the other man had his big op at Pca diagnosis with low Psa and low Gleason score, and he didn't want RT, ADT, or RP surgery because he had read just how effective these things were, and none of them had a 90% success rate. So the big op put an end to his worries and he realized it was OK to join the other 40,000+ Australians with a plastic bag for pee, and  he  got a good night's sleep without wake ups,  and he has had no recurrence of his Pca. He also has normal testosterone levels which are good for general health.

Most men are terrified by immediate removal of bladder with PG and all its nerves and cutting urethra off just above Rodger, which immediately becomes totally useless. 

But his losses of bits and pieces of his body did not leave him disfigured.

Patrick Turner. 

 

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