Scan this Wednesday

User

Posted 30 Jun 2021 at 12:54

Have you tried AllClear, WorldFirst or Insurewith?

Ido4

User

Posted 16 Jul 2021 at 14:43

Good news in that PSA down from 0.19 to 0.11. Testosterone virtually undetectable. I need to eat more spinach etc for the iron although haemoglobin still good.

I got travel insurance from Battle Face - £150 for 15 days in Spain excluding existing conditions.

User

Posted 06 Aug 2021 at 09:26

September 1 scheduled appointment with oncologist to discuss and agree on RT treatment. In the meantime, I had a great holiday in Spain with my daughter, hubby and first grand child (now 9 months old) together with my second princess (now 20 years old). My brother and wife are moving from London to my village for 6 months, both to trial living out of London after 45 years and be close to provide support for me should it be needed. Hopefully, their main duty will be to walk the dog. Side effects from hormone treatment continue to be Ok; aches and pains in back and legs but not too much, tiredness, and of course ED (but I have nothing to prove that this is an issue). Next blood test in 10 days and I hope that PSA has dropped to below 0.1.

What I would comment on is the support I receive from almost everyone. Without looking for sympathy, I don't make a secret of my condition. Marvellous. I read this message board and Health Unlocked every day but steer clear of other stuff. I would say that 90 % of posts make me feel positive, while the other 10 % remind me to keep fighting.

User

Posted 19 Aug 2021 at 12:53

PSA down from 0.11 in July to 0.07 in August. Sounds good?!? Initially 64.

Testosterone undetectable.

Haemoglobin increase to 1.32 (range 130-180). White cell increase 4.9 to 6.0 (4.0-11.0). Platelets 185 to 194 (150-400). Red cell 4.04 to 4.06 (4.40-6.50). Neutrophils 2.7 to 3.3 (1.8-7.5). GGT 107 to 116 (<0.7) but has been as high as 194 .

I have next zolodox injection (3rd) September 9.

Oncologist meet on September 1 to agree radiation treatment. Suggestions as to what I should ask him??

Thank you to everyone.

User

Posted 19 Aug 2021 at 16:42

PSA looking good.

I think I would ask what the plan is for the three mets? Are they to be targeted?

Dave

User

Posted 30 Aug 2021 at 15:29

The meet with the oncologist to discuss RT will happen on Wednesday. I am 95 % certain I will follow the advice offered by him. However, a couple of recent posts on here and Health Unlocked were from people who had stuck with HT and not gone with RT or chemotherapy, and they feel fine with low PSA and testosterone after 7 or so years.

What do you guys think? I understand that each cased must be judged according to its own merits and there are exceptions to the rule, but is reliance on HT a rational decision (I have no issues wit the side effects such as tiredness, ED and hot flushes - they are what they are).

One of the first response from Lynn on the ATLANTA trial were that two the arms were unlikely to be curative. Would I be being over optimistic in thinking the HT plus RT could be curative?

User

Posted 31 Aug 2021 at 00:29

Until recently if you had distant mets. The only treatment on offer was HT (plus chemo and stronger HT) and this would never have been curative.

It seems now that RT is being offered and I presume this will include the mets. I do not know if this is intended to be curative, to me it seems a long shot, but maybe treatment is more effective now a days.

With HT alone I think it is pot luck how long you will survive. How much extra life you would get from RT, I have no idea, for the sake of argument I am going to say two years, but that is just picked out of the air at random. Anyway I can see little disadvantage to RT, the side effects are usually minimal and for a few more years of good quality life I think I would give it a go.

Dave

User

Posted 31 Aug 2021 at 13:00

If they target the pristate bed and distant mets, they are aiming for a long remission. If they target just the prostate, they are still aiming to slow the cancer down and give you a longer brighter outlook.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Sep 2021 at 14:24

I had a very positive meeting with the oncologist this morning.

1. He is pleased with PSA at 0.07 and testosterone not being measurable.

2. He recommended RT to further extend the benefits of HT.

3. RT will be on prostate beds and sem. visceral glands that may be affected. 3 mets mat be treated later on.

4. The RT will be EBRT - VMAT. (volumetric-modulated arc therapy)

5. Treatment 6 weeks / 6 GY

6. Next stage - planning session

7. RT to start late September / early October.

8. My staging T3bNiMIb GL 4 +4

9. Taluzoparib potential option at later stage.

10 HT for rest of life, with change if one becomes ineffective.

11. Prognosis - who knows but no reason it cannot be 10 to 15 years (he had patients that morning that had been under treatment since 2007).

12. RT side effects likely to be bearable and short lived - mainly bowel and urinary issues.

User

Posted 02 Sep 2021 at 11:24

Following the meeting yesterday when the Dr said he was unsure when RT would start due to backlog related to COVID, I was (pleasantly) surprised by a telephone call at 08.30 this morning asking me to go for the pre RT preparation meeting tomorrow. Does anyone know the usual time between such a meeting and the first session of RT?

User

Posted 02 Sep 2021 at 11:30

Hi, i had a mtg wth onco to 'sign off' for RT, then a session with nurse to go over what happens, then the CT planning scan session... Gap between CT planning and RT start circa 3 weeks for me, but guess that will differ for each individual case and machine availability.

Cheers,

Nick

User

Posted 02 Sep 2021 at 14:37

John had his planning scan about 4 weeks before the RT started. The onco team uses the planning scan to write the computer programme for your personalised (aka modulated) RT.

Edited by member 02 Sep 2021 at 14:38 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Sep 2021 at 14:51

Had CT scan and tattoos today and first RT session will be on Sept 22; the first of 6 visits over 6 weeks at 6GY

User

Posted 03 Sep 2021 at 17:30

Good news Cayambe, I like this new philosophy of fewer high dosage treatments. I had to go 15 times fortunately it wasn't too far from where I live, but only going once a week would have been nicer. I certainly would not have liked the old regime of 37 visits.

Dave

User

Posted 09 Sep 2021 at 16:53

PSA down from 0.11 in July to 0.07 in August and 0.04 in September and just had 3rd inject Zoladox injection

User

Posted 13 Sep 2021 at 13:28

Following diagnosis in January and consequent hormone treatments with no serious side effects and reduction of PSA from 64 to 0.04 with testosterone undetectable, I am tattooed and ready for first radiation treatment of 6 *6gy. I have read up about it and I am prepared (incontinence pads at the ready 🙃) but would welcome any advice and tips from those who have experienced the same.

User

Posted 13 Sep 2021 at 16:05

I had 15×2.75 gy. I don't think many on here have had the hyper fractionated version which you are having, though it seems that is the way forward. Anyway for me with the old fashioned fractioning no problems at all.

BTW excellent psa result.

Dave

User

Posted 21 Sep 2021 at 15:59

No issues at all with first radiotherapy therapy treatment of 6 gy this morning. Long may it last!! I will now double down on exercise and consumption of supplements in the expectation that weakened cancer cells are less able to resist any benefits they may offer. The next 5 appointments are all confirmed with last one on October 26.

User

Posted 21 Sep 2021 at 18:20

I'm glad it is going well.

Don't take any supplements which are anti-oxidants RT works by increasing free-radicals which damage DNA in particular cancer DNA.

Dave

User

Posted 21 Sep 2021 at 20:27

What supplements are you talking about Dave ? I only take turmeric capsules and biokult.

Asking because it's seems I,m on a very similar treatment pathway to Cayambe .Having CT planning scan on Monday.

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