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"The road ahead"!

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User
Posted 19 Dec 2019 at 21:06

Hi Valleyboy


I don’t pretend to understand all your post but good to see your still  battling on, I hope all goes well for you I’m almost finished the abiraterone and starting chemo in January 


have a good Christmas and hopefully a healthy new year


R

User
Posted 19 Dec 2019 at 21:20
Thanks for that. I had 17 chemo infusions up until August last year. Most of which was successful in that it kept both my PSA and ALP in check. So hopefully you ll cope with it too. As you can see I’ve moved onto private Lutetium treatment now with 2 infusions done and depending on tmos scans No 3 booked for 9/01/20.
Keep the Faith
J.
User
Posted 23 Dec 2019 at 18:38
Ok. Hb level down to 77 so blood transfusion today (08-30-17-30). All ok. Plus back into hospital for 11-00 tmos for Zometa bone hardener infusion.
Still awaiting PSMA/PET/CT results from last Friday, via my consultant from Bristol. So I ll update further when received.
In the meantime Merry Xmas and a Happy New Year to all.
Keep the Faith.
J.
User
Posted 23 Dec 2019 at 22:29
And a good Christmas for you and yours x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Dec 2019 at 07:14

Have a good Christmas Valleyboy, hope all goes well today.

Ido4

User
Posted 24 Dec 2019 at 10:15

Hi Valleyboy


Have a good Christmas and hopefully a happy and healthy new year 


R

User
Posted 24 Dec 2019 at 15:49

Merry Christmas Valleyboy.


Keep the faith


Regards


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Jan 2020 at 11:54
Ok just had a call from Genesis Care Windsor, my private treatment provider, with the results of my recent PSMA/PET/CT scan and booking me in for my Lutetium 177 cycle 3 next Thursday 9th January.
Scan shows reduction in tumour size of approx 30%, (yes!!), So hopefully it’s starting to kick in and will get even better after injection/3.
My ALP bloods bone marker is also down another 50 points, so that’s down over 100 in a month, all in the right direction.
Still awaiting my PSA and Hb scores from bloods taken on the 02/01/20.
As usual I ll update next week after I’ve had the Lutetium to let you know how it goes.
Happy New Year to all.
Keep the Faith
J.
User
Posted 03 Jan 2020 at 11:58
Great news and a good start to the new year for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 12:48

Yep a really good start to the new year for you, hoping it gets better along the way. 


Met with oncologist today and that's my PSA down to 1.2 now after 8 weeks on enzalutamide so quietly happy too. 


Cheers


Sandy

User
Posted 03 Jan 2020 at 13:19

Wonderful news. Happy New Year.


 


Roy

User
Posted 03 Jan 2020 at 17:17
Great news Valleyboy,

Lutetium 177 appears to be working well.

Brilliant

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 03 Jan 2020 at 17:35
Cheers Dave.
Hope it going well for you too. 👍
User
Posted 08 Jan 2020 at 16:28
Ok. Bit of a messy update but here goes, and whilst I’m feeling fine within myself...........
Both Hb bloods and platelet counts today are very low so Lutetium/3 which was due tmos. Has been postponed for a few weeks for bloods to recover.
Also as the numbness in my chin and lower lip is now into day 32, and steroids hasn’t touched it. My specialist in Bristol, has indicated that he wants me to have some Exernal beam radiation treatment, to the base of my skull, ( possibly 5 x session over a week) , as my last PSMA/PET/CT scan seems to show some significant tumour activity In this area, which could well be causing this mouth numbness. Anyway he’s going to liaise with my local oncologist to see wether I can get this treatment over the next 2-6 weeks on the NHS. If not I ll stay on the privately funded bus!!🙈
On the up side my recent scan confirms that my previous 2 Lutetium injections have decreased 80-85% of my tumours by 30%. Whist the remainder have no reduction in size but remain stable.
So like I said a mixed bag, but as my high PSA and ALP levels are also moving slowly in the right direction, I’m happy with that.
So once again Happy New Year to all.
Keep the Faith
J.

User
Posted 08 Jan 2020 at 19:08

Happy New Year Valleyboy, sorry you are still suffering the numbness. Hopefully a blast of radiotherapy will help that. The shrinkage of tumours is very encouraging.


Hope you can get the RT within the NHS sVing your wallet!


All the best,


 

Ido4

User
Posted 19 Jan 2020 at 16:49

Glad to hear some stability in tumor activity, our Dr considers that positive news even if the mets don't go away.  Your journey is inspiring, your spirit an inspiration - thank you, 


Saint Paul

User
Posted 20 Jan 2020 at 08:34
Ditto Saint Paul

Bri
User
Posted 20 Jan 2020 at 08:51

Very best wishes Valleyboy and hang on to the many positives


Regards


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 20 Jan 2020 at 12:46
Due to continued low blood levels. Hb 72, now gone back up to 88 after recent blood transfusion. Whilst my platelets seem to have bottomed out at 23.( But this will only be confirmed after more blood tests tomorrow and next Tuesday. ) My Lutetium/3 injection has been postponed until further notice. As my Consultant Professor in Bristol is of the opinion that if I was to continue with Lutetium at this moment in time it will only hammer my bone marrow further. We have therefore agreed to postpone the Lutetium for at least 2weeks, if not 3, until my blood levels recover to a sufficient level to make the Lutetium more manageable.
All other bloods looking good on 17/01/20, when compared to bloods taken on 19/12/19, with Kidney function all in normal range.
Liver function all ok, except for ALP which as for my Bone Marker is down 11 to 184.
Whilst my PSA is again down 354 to 1247.
Hb up 11 to 88. With platelets down 71 from 94 to 23.
Still got numbness in my chin and lower lip area, but I was measured up ( including the fitting of a personalised face mask), ready for 5 x sessions of radiotherapy the week after next. Also if that goes to plan the NHS hospital in Swansea have also offered me some further radiation to my upper right femour area, which is currently causing me a lot of pain when walking.
So on we go. And I ll update as soon as I have any results of the radiation treatments to let you know what’s happening.
All the best.
Keep the Faith.
J.

User
Posted 26 Jan 2020 at 22:49

My husband's platelets took a nose dive too at his appt last week, 67.  Not as low as yours.  Have you tried raising it up naturally with foods high in folic acid and iron?  Leafy greens and legumes, fortified grains like white rice and pasta, and instant oatmeal.  We are afraid the trial will stop if it goes lower.  However a respite from the side effects would do him some good.  


Thinking of you often, all of you....

User
Posted 30 Jan 2020 at 08:40

I've been following this thread in the hopes that my dad responds to Lutetium-177 as others have here but he's not so lucky.


Scan results today show that the two treatments he has received have made no difference with some areas progressing and his PSA has been trending upwards throughout treatments 1 & 2 (79 to 135 to 120) and in the last week jumped to 180. Treatment has been stopped and we wait to see what the oncologist recommends next.


Hang in there everyone!

User
Posted 14 Feb 2020 at 16:44
Ok. Lutetium 177 sessions 2 and 3 still on hold due to low Hb and platelet levels. As my consultant has stated that whilst sessions 1 and 2 have worked in that it’s reduced most of my tumours by 30%. It’s also hammered my bone marrow which means no further Lutetium till blood levels improve dramatically.
I’ve also had 2 weeks in hospital following a temperature reading of 39% where for the 1st few days I was a bit “doolally” and totally confused. Initial diagnosis was sepsis so I was immediately put on regular antibiotic drips. Which finally broke the fever. Daily blood tests undertaken in an effort to identify the cause of the fever but even with blood culture analysis nothing specific could be identified. So after 2 weeks of intensive monitoring I have been sent home with temp back to normal and feeling much better.
During the week or so that I’ve been back home the hospital Occi health unit have arranged for raiser bars to be fitted in house toilets. With a seat to be fitted in the shower in due course. The hospital physio team have also given me a series of leg exercises to strengthen my legs and are calling out next weds with a further set of exercises.
I’ve also bought a riser recliner chair which is an absolute godsend, as it allows me to sleep in a comfortable position as it’s very difficult to get upstairs at the mo. Also if my leg continues to give me hip for about a month I may consider hiring a stair lift thus allowing me to get back upstairs??
Just finished a course of 6 radiotherapy sessions. 5 which were directed at the base of my skull, in an effort to alleviate my chin/lip numbness, which is a bit better but certainly not cleared up. Following the last session on my neck I was also given a blast of radiotherapy to my right hip which again whilst not clearing it up it has helped with the pain in this area.
So now waiting for a letter from my radiotherapy consultant as to way ahead. As I’ve been told by the nurses that each radiotherapy
treatment affects each person in a different way so they are unable to state wether I ll need further treatment in a month, 6 months etc.
Local hospital consultant has also requested that I continue with fortnightly blood tests in a effort to manage if/when further blood transfusions are needed. God bless the NHS.
Any way that it’s for now!! and I ll update you all as when if anything else untoward crops up.
Keep the Faith
J.
User
Posted 14 Feb 2020 at 17:28

Hi Valleyboy


Wow you’ve been through the mill but your spirit continues to shine through keep on fighting and hopefully better days ahead, I’ve started the chemotherapy now 2 sessions in it’s bearable my hair is rapidly going my stomach is in knots most of the time on the plus side the pain in my hip has gone.


keep the faith


best wishes


R

User
Posted 14 Feb 2020 at 17:37

Sincere good wishes to you.

User
Posted 14 Feb 2020 at 17:51

My goodness Valleyboy.  Sending good wishes your way.

Ido4

User
Posted 15 Feb 2020 at 17:55

Keep up the spirits Valleyboy.


My 4th Lutetium session is on Friday 13th March. Now there is an omen if even there was one.


Regards


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 Feb 2020 at 18:07
Well done Dave. Looks like your coping well. Whereas at the mo. It’s completely wiped me out!?
All the best
Keep the Faith
J.
 
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