I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
<123>

Scan this Wednesday

Email this conversation Print this conversation
User
Posted 14 May 2021 at 11:37

Originally Posted by: Online Community Member
I was notified of CT scan appointment for May 26. What are personal experiences of others? My oncologist said it was to confirm screening - is it possible that it will identify other problems?


It's pretty common for these cancer scans to show up other issues: think of it as a "body MOT". When I had my scans for prostate cancer, the scan also found an unrelated kidney tumour AND an aneurysm that I apparently could have dropped dead from at any moment. All three now sorted, thankfully. 


Chris


 

User
Posted 21 May 2021 at 17:18
CT scan postponed until June 3. Went today for second month supply of Enza. Result of blood test done on Monday - PSA at 0.33 and liver and kidney functions within the range. Lowering of red cell count to 4.3 from 4.5 and HCT at 0.381 from o0.395. Neiltrophis from 4.5 to 2.7.

I think that is positive?
User
Posted 08 Jun 2021 at 11:06
Yesterday my oncologist phoned with the results of the CT scan carried out last Friday. I am happy to report that no spread to lymphs, and confirmation that spread limited to the three mets identified in the bone scan. She was happy that PSA had reduced to 0.33. The next meeting I have with her or her colleague will be face-to face in 3 months to talk about the planned radiation treatment scheduled for later in the year.
User
Posted 21 Jun 2021 at 11:06

After 2 months of "up front" Enzalutamide and 3 months of Zolodox.


No adverse side effects.


I'm happy to report PSA down to 0.19 (20/1/21 = 64.7, 18/5/21 = 0.33) and first testosterone measure <0.5 (normal range 7 - 26).


All other blood indicators in normal range except red cell (4.11 v. 4.5 to 6.5), estimated GFR (69 v 90 to 120 but compares to 61 0n 7/1/19).


Can I expect PSA to go down further (next blood test 15 July)?


Oncologist appointment early September to discuss local radio therapy (36 gy in 6 factions). Does anyone know what that means?


So all systems go for Spanish holiday July 21.


Plus I bought a dog - walking about 30 km a week.

Edited by member 21 Jun 2021 at 11:07  | Reason: Not specified

User
Posted 21 Jun 2021 at 15:38

Hi Cayambe,


PSA looks good. I think mine dropped to 0.8 from 24 in the first three months and went on to become <0.1. I don't know if yours will keep dropping it's looking like it is levelling out, but I would say it is good.  


36 Grays in 6 Fractions. Well the total dose they intend giving you is 36 Grays. I can't remember the exact definition of a Gray, but it is just a unit of radioactivity. More interesting is how much they are giving you. I think in the old days they used to give about 80gy then it went down to about 50gy and it looks like they are trying to reduce it further. (they can do this because it is better targeted, in the past half of those Grays were missing the cancer and damaging other organs instead).


The 6 Fractions just means you will have 6 treatments and each will be 6 Grays each. Quite interesting because in the past they only gave between 2 and 3 Grays at a time. Giving fewer more intense doses is a topic of debate, it is certainly more convenient to only have to go to hospital 6 times rather than 20.   

Dave

User
Posted 21 Jun 2021 at 16:24

Thanks for that. Do you know if they will target the prostate or that and the three mets? Side effects? I suspect if it is stronger than usual these may be exaggerated. 6 times over 6 weeks or 6 times over a shorter period? (I am thinking about what I may plan for Xmas)

User
Posted 21 Jun 2021 at 22:02

I don't know if they will target the mets. If they are very close to the prostate they may be zapped at the same time.


If they don't treat them then they will presumably become the site from which further cancer cells will spread.


If they do treat them they really need to be zapped more than once, as they are only giving you 6 fractions I can't see how or when they will do the mets unless they are done at the same time. 


If RT starts in September, I think it is most likely you will be fine by Christmas. I think the side effects are proportional to the total dose not the strength of each fraction (unless they gave you all 36 grays in one go, in which case I think you would come out the machine smelling like a bacon sandwich).


Side effects are worse towards the end of RT and a few weeks after, so early November may be when they are at the worst, it could involve fatigue, or minor bleeding from bowels. I wouldn't book an expensive holiday just in case you can't go, but you might want to book a cheap holiday and accept you may lose the money if you do have side effects.


Hope the July holiday goes well pandemic permitting. 

Dave

User
Posted 21 Jun 2021 at 23:45
It is called hypofractionated radiotherapy and this may seem counter-intuitive but the higher the dose & fewer the fractions, the less side effects (up to a point - go too high with the dose and as Dave says, bacon sandwiches). 30 years ago, they were giving 36Gy in 6 fractions over 3 weeks (so a visit to the hospital twice each week) as a radical (curative) treatment regime. More recently, the Stampede trial has tried 36Gy over 6 weeks for men who are metastatic - the RT was only targeted to the prostate and not the mets, I think. Data suggested that it didn't provide any great benefit over 55Gy / 20 fractions but had fewer side effects than 74Gy / 37 fractions.

Has the onco said anything about it being part of a trial? It may just be their preference but if a trial, that should be explained to you & your consent sought.

Christmas looks good, then, but if going somewhere sunny, you will need to use factor 50 around your midriff or keep your shirt on.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2021 at 10:06

Hi. I don't think it is part of a trail - my oncologist was dubious about ATLANTA. I guess all will be explained early September.   

User
Posted 30 Jun 2021 at 11:45
Hi. I just looked at quotes for travel insurance for 2 week trip to Spain. It comes out (various suppliers) at an average of about £2500; or more the double the cost of the holiday! Advice?
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.
User
Posted 21 Sep 2021 at 22:52
Turmeric & biokult should be fine but best to check with the RT team / RT dietician before taking any supplements at all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Sep 2021 at 00:03

Vitamins A, C, E and beta carotene are antioxidants, these will survive the digestive system. Glutathione is an antioxidant. I think if taken orally it will be broken down in the digestive system and do neither harm nor good.


Many other supplements will be marketed as antioxidants as it sounds good on the label, whether they are or not varies.


Now a good balanced diet is always a good thing, supplements can make up for dietary deficiencies and most are just excreted if surplus to requirements.


When undergoing radiotherapy or chemotherapy the oncologist is trying to poison the cancer cells, so during these treatments we shouldn't be giving the cancer lots of healthy nutrients to help it fight of the attack. Of course it would be nice to give the non-cancer cells the healthy nutrients but we can't give to one lot without giving to the other. So whilst undergoing chemo or radio don't try and live healthy (obviously don't make a deliberate attempt to live unhealthly, the oncologist is trying to provide as much toxicity to your body as he can safely get away with so don't make it even worse for your body). Once treatment has finished resume a healthy diet, take supplements if you want. Hopefully the cancer cells have been killed and you are now providing the good cells with the nutrients they need to recover from the treatment. 

Dave

User
Posted 22 Sep 2021 at 07:17
Thanks Dave and Lyn,For the sake of 6 weeks think I,ll just stay supplement free.I already run the higher risk of proctitis etc due to previous treatment.
User
Posted 22 Sep 2021 at 10:30
Many many thanks for the advice Dave - I have read loads of stuff over the past 6 months but that is perhaps the most important information that I have received. I did a bit of research this morning and that confirms the decision to stop taking all supplements for the next 2 months at least, including the "dodgy" apricot kernels and tumeric. I will meet with the oncologist in November to consult; previously he said he had no issues with patients taking supplements. Steak, crisps, peanuts, egg and chips, bacon ---- welcome back you've been sorely missed.
User
Posted 05 Oct 2021 at 20:08

Today, I had my monthly blood test preliminary to renewal of my enzo prescription on Friday, and the third radiation session (third out of six) . Last month the PSA was 0.04. I mentioned this to the radiation technician and she advised me not to be surprised if I found my PSA rising during RT to then go lower after completion of the course. What is the experience of others on this issue; I tried to do some research but only found papers based on sampling trials quite a while back that were more confusing than enlightening. As for the RT, it is no great shakes although my daughter remarked that I was very pale; last week I had splitting headaches for a couple of days.

User
Posted 08 Oct 2021 at 15:30

Pleased with the result of my blood test today - PSA down to 0.03 and rest of bloods within range apart from red blood cells and haemoglobin.


However after the 3 rd of 6 weekly radiation fractions on Tuesday I am feeling very fatigued and a bit down. 


 

User
Posted 09 Oct 2021 at 02:43

Nice PSA result. They are big doses of RT so no wonder you are tired. Still half way through now.

Dave

User
Posted 09 Oct 2021 at 10:29
Off the top of my head, I can't think of another member that has had the 6 x 6Gy regime who could give you any steer on how they found it. You are a trailblazer!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2021 at 10:45

Originally Posted by: Online Community Member
I mentioned this to the radiation technician and she advised me not to be surprised if I found my PSA rising during RT to then go lower after completion of the course. What is the experience of others on this issue;


I expressed interest in knowing my PSA during radiotherapy, and they said they wouldn't do that - it would scare me. Well, they did do it half way through when taking bloods for other things, and contrary to what I was told to expect, it went lower, but because the hospital which did the radiation used a different lab with less accurate PSA testing, I can't really compare it accurately with all my other PSA tests as it was off the bottom of their measurement range. My PSA a few hours before I started RT was 0.12, halfway through it was <0.1 (different lab from normal), and next reading 4 months after RT, it was <0.01

User
Posted 09 Oct 2021 at 11:02
John's onco insisted that no PSA test was done between starting RT and 3 months after it finished, I think. However, my understanding is that if a man is on HT during RT, the RT doesn't really affect PSA whereas if a man is having RT monotherapy, the PSA can jump around a bit as the cancer cells fry.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2021 at 11:24

I get blood test 2 or 3 days prior to each prescription renewal. Next is one week after final fraction.


 


I feel less tired today, which is a blessing, 3 days after 3 rd fraction. After 1 st I was a bit under the weather for a day, after 2 nd a splitting headache for two days, so I anticipate 4 days of negative side effects following next week, but nothing unbearable if my mind is in the right place.  

User
Posted 09 Oct 2021 at 12:30
Good to hear that it's been reasonable so far. Side effects are cumulative with RT, and generally peak around 10-14 days after treatment ends (at least with daily RT - don't know if it's different with yours?). I found that after the peak things did subside quickly.

Very best wishes,

Chris
User
Posted 04 Nov 2021 at 16:35
PSA stays at 0.03 which is a good result I think. For the first time in 9 days post last fraction I feel ok. Peeing a lot but a lot less tired to the extent I worked all day on policy documents and i will go out for a couple of pints and some cumberland sausage.
User
Posted 04 Nov 2021 at 19:25

Hi Cayambe. I have been following your journey as it is similar to my husband's who was diagnosed in June G9 T3bN1M1 PSA 75. He started on bicalutamide then zoladex and now Enza also. PSA now 0.6


Radiotherapy begins on Tues 9th, once a week for 6 weeks at Oxford's Churchill hospital. Your posts have given me hope and encouragement. OH is feeling well at present although tired at times. He's not one for forums. I however, prefer to connect with others in a similar situation and appreciate your posts as well as others on this site...a great resource. 


I am pleased you are picking up and hope you continue to improve post radiotherapy. 


 

Edited by member 04 Nov 2021 at 19:25  | Reason: Not specified

User
Posted 07 Nov 2021 at 10:15
A rectification of the nurse's verbal report - my PSA is < 0.03 which I guess mean not measurable. All other bloods good. Tireness continues but not so acute.

Granita I hope your OH fares equally as well. I don't know what RT he will get over 6 weeks but mine was weekly for the sam eperiod at 6 GYs that is apparently a strong dose. As others told me, the effects are cumulative but not permanent.

There is another guy on this message board who received the same diagnosis as me - survival for 5 years and hormone treatment for the rest of his life. He was diagnosed in 2007!! (although he appears to had a whole host of other medical conditions over the past 14 years but I don't know if they are PC related).

Of course, we all bless our great doctors but formal treatment must be supplmented by personal action as the conscience on my shoulder keeps telling me (i.e. my older brother) - exercise and diet.

On diet of course everyone has an opinion and their own preferences . I have broadly continued on the diet I had been following for a year before diagnosis (no sweets, colas, chips and only occasional fry ups) but am eating more and more fish. So in Jan 2020 I was 97 kg, at diagnosis 91 kg and now 85.5 kg). Brother says I must reach 75 like him - no way!! And I refuse to contemplate walking the Cumbrian Way!

I stopped supplements during RT. Now will take tumeric, apricot kernels and a couple of others.

Take care
User
Posted 07 Nov 2021 at 10:40

Cayambe, the radiotherapy will be the same as you had. 6Gys per weekly session over 6 weeks. 


We too have adopted a predominantly Mediterranean diet with lots of oily fish and very little dairy.  OH is on the skinny side,  but he misses his sweets!


We are currently spending the weekend in Weymouth, a short break before the radio starts. Just got out the hot tub... it's a beautiful day here. Then heading out for a walk and eventually a pub. You've got to enjoy each moment whether you have PC or not!


 


 

User
Posted 11 Nov 2021 at 20:58

I had a telephone meeting with the oncologist. Basically, extremely happy with the outcome of the process so far with PSA not measurable. For those like me that respond so postively to treatment, the next few years will be based on 3 - monthly blood tests and continuation of zolodox and xtandi. I asked about the mets and he said that wherever the PC cells are in the body they act in the same way, so any increase in PSA would be the signal for investigation. I asked about treatment holidays and he said no as the current practise is to maintain prescriptions. 


I feel better by the day after my final fraction 16 days ago, although ropey for the first 11. Yesterday at the behest of my brother I walked 7 km (after 3.5 km on each of the previous 2 days) and struggled greatly for the final km. I did however recover quicky so did not curse him too much and managed 2.5 km today. Now to get into the weighs to build upper body and stamina.     

User
Posted 11 Nov 2021 at 22:49

Hi Cayambe, Always good to hear positive news. Sounds like your treatment has worked well. It's great that you have managed 7km. Impressive! Onward and upward then. Are you sure you don't want to attempt the Cumbrian Way?


OH had his first fraction of 6Gys on Tuesday. Looking forward, his last session is scheduled for Dec 14th so I'm thinking we will prob have a very low key Christmas. We are lucky to have both our daughters and their families within walking distance of us. Close enough to pop in and pop out again if it gets too much. 


Wishing you all the best. Thanks for all your posts. 


 


 

User
Posted 11 Nov 2021 at 23:05

The Cumbrian way is to sit on the couch and do nothing 😂. I am negotiating a short part of the Northumbria coastal route - say 5 miles!  I hope that you manage to have a nice Christmas. If it goes the same way as me, OH  may feel a little more animated by the 24 th.  If he goes as pale as I did he can play the ghost of Christmas past, but timing will  be crucial as he will quickly  recover his normal complexion. 

User
Posted 12 Nov 2021 at 00:45
Great result Cayambe 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
Forum Jump  
<123>
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK