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User
Posted 22 Aug 2018 at 23:05

I was told by onco that I will always be on some form of HT, no matter what else happens, or whatever other treatment I may be given.

Sorry to hear your news Roy and I hope you can get some answers soon

Best wishes

Peter

User
Posted 27 Sep 2018 at 21:07

Well guys the results of the PET/CT scan are in.

 

there is good news and bad, the good news is that I no longer have any evidence of Bone Metastases,as the chemo seems to have taken care of that, also all the previous lymph nodes affected have been sorted. Now the bad news, it has now spread to several different lymph nodes so it's not giving up yet, so the fight goes on.

i have managed to dodge the Firmagon for the time being and restarted Bicalutamide as I refused to go on it until the scan results were in, and without my Oncos permission restarted the Bicalutamide 4 weeks ago as I had a previous supply left which  has brought my PSA down to 7.9 so he had to agree it was still effective, so there we have it I will take The good news and bank it.

all the best

Roy

Edited by member 27 Sep 2018 at 21:09  | Reason: Not specified

User
Posted 28 Sep 2018 at 06:54
Thanks for the update Roy. Some positive news in there for sure , however I dont understand how systemic chemo has cleared up all the old known stuff yet allowed new stuff to grow. Doesn’t make sense really ?

If life gives you lemons , then make lemonade

User
Posted 28 Sep 2018 at 11:03

Hi Chris

thanks for your post. I can only assume that it didn't tackle the cancer cells within the blood, therefore allowing it to reseed in other areas.

Roy

 

User
Posted 28 Sep 2018 at 15:00
You will keep hanging in there Roy I'm sure, as the fight goes on.
Barry
User
Posted 28 Sep 2018 at 19:38

Keep fighting, Roy! 

User
Posted 28 Sep 2018 at 19:55
Silver linings light up cloudy days - stay well Roy x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2018 at 11:44

Hi guys

Had my bloods taken yesterday and the latest PSA is 7.90, therefore no change from the previous one taken 7 weeks ago, so what to do now? is the question. I will be seeing my Onco on Thursday, watch this space.

 

Roy

User
Posted 15 Apr 2019 at 12:11

Hi I thought I would post an update and show I am still here nearly 7 years since diagnosis with a PSA of over 94.

the time since my Chemo has not been pleasant leaving me with peripheral neuropathy, making walking difficult, but it is improving albeit slowly.

Since my last post I have had two PSA checks, one returned the same as before at 7.9 and the next came down to 7.6 so I chose to stay on the Bicalutamide, but my last check showed a rise at 9.5 so I had to make a decision, stay on the Bicalutamide which seemed to be failing or bite the bullet and accept Degralix, which I had refused uptil now. Having checked my level of testosterone and androgen level I had to concede, as they have remained very high with the T at over 50 so I needed to bring it down, therefore I had the Degralix loading dose last Thursday with the next dose in 4 weeks. So we will see how I goes as according to the Onco I should reach castrate level any day now ( oh happy days).

all the best

Roy

User
Posted 11 Dec 2019 at 12:11

Hi 

Thought I would give a quick update in response to Barry's kindly asking how I was doing. Things not to great at the moment, the Degralix didn't get me to castrate level and PSA was rising (doubling every month, so 7 weeks ago added Abbi tabs to the mix but to early to know if it is working but need to make a decision in a few weeks if I want to change to Enzo as it has to be done within 3 months. Noticed a swelling under the left armpit which I believe may be lymph nodes and painful, also last week whilst turning over in bed I think I may have broken a rib as it felt like it had detached and slid under the sternum. Managed to get my Onco to see me next week and will be pushing for a scan to see what is going off inside.

all the best

Roy

User
Posted 11 Dec 2019 at 13:11
Sorry new is not better Roy but I know you are a man who will keep pushing for what might benefit you. Will be interesting to see what Onco says next week. Hope you have not got a detached rib. Occasionally I have moved in a certain way and it feels I have pulled a muscle in my chest. It's very painful for a time and can happen again more quickly unless I am very careful . It has happened sometimes as I reach over my shoulder to wash my back. I think it is possibly due to over stretching. Let's hope it is something like that and does not relate to PCa and treatment.
Barry
User
Posted 11 Dec 2019 at 13:14
Best wishes as ever Roy. Hope the news is as good as it can be for you given the circumstances ! Fingers crossed for you

If life gives you lemons , then make lemonade

User
Posted 11 Dec 2019 at 13:53
Sorry to hear about the doubling in PSA and other issues Roy. Hope the Oncologist consult goes well

Bri

User
Posted 11 Dec 2019 at 15:59

Hi Roy, sorry to see your doubling time. I hope the Abiraterone does a good job for you. The rib sounds painful, hope your oncologist provides answers.

 

Ido4

User
Posted 27 Apr 2020 at 12:29

Hi Guys

its been a while since I updated you on my journey so here goes. Since Dec and the addition of Abbi tabs, I am now at castrate level of 0.1 (happy days lol) my PSA has reduced from 15.1 to 2.7 and scans show one lymph node of 16mm but all the others are normal and no bone involvement.

You may remember I thought I had broken a rib, well I had a chest X-ray and was told all was ok, but after a few weeks received a call to say they had looked again and yes I had a small fracture on the fourth rib that had been treated by SABR so after my next meeting with my Onco I told him the intense pain was still there, so he agreed to give me a bone and CT scan with tracer, which guess what I hadn't fractured a rib I had infact fractured two and one had broken and was detached and looked to me like a head of a spear, so no wonder it hurts like mad.

so I am waiting to see if anything can be done, but in this climate I will not hold my breath, although it would help with the pain lol.

all the best

Roy

User
Posted 27 Apr 2020 at 19:12
Oh no! I hope it heals soon Roy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2020 at 21:59

Hi Lyn

thanks for the concern. Unfortunately I think it may need some surgical intervention as it is so misaligned that I can feel it clicking bone on bone when it's not sticking in my internal structures.

 

all the best

Roy

User
Posted 27 Apr 2020 at 22:45
My teeth are cringing for you - sounds awful. John broke his ribs a few times playing rugby, and the first time it happened I sat up all night watching him; I was scared that he would just stop breathing because it hurt so much.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Apr 2020 at 01:43
Can understand your pain. I had a bad fall due to ice on pavement once. Paramedics thought I had broken a rib but in fact scans showed it was badly bruised. Anyway it was extremely painful.

As regards your situation, saw on TV yesterday that people are being encouraged to attend hospitals again because people who would normally do so are tending to stay away. Some hospitals are cordoning off areas/wards for treating possible/confirmed C -19 virus patients so these do not mix with patients attending for other reasons. I would check what the position is like at your hospital. From memory I don't think they do much for patients but in your case perhaps some surgery/alignment/support could be carried out. Maybe the scan showing the damage could be shown to a surgeon to consider prior to you attending to save a possible abortive visit.

Best wishes

Barry
User
Posted 28 Apr 2020 at 09:03

Hi Roy, 

Sorry to hear about this.  It must be awful for you. 

I broke a rib a few years ago and that was bad enough then but it was nothing compared to what you're going through.

I hope everything is sorted for you soon. You don't deserve this. 

Steve 

User
Posted 28 Apr 2020 at 10:16

Hi Roy, that sounds excruciating. I hope you get it sorted soon.

 

Ido4

User
Posted 28 Apr 2020 at 10:54
Hi Roy, great to hear from you. Positive news on the PCa front. I hope you get the rib problem sorted ASAP

Take care

Bri

User
Posted 28 Apr 2020 at 19:28

Hi Guys

thanks for the posts it is much appreciated.

 

thanks for the info Barry. When I saw the Onco 3 weeks ago he said the only advice he could give me was to take painkillers, but he would bring it up with the SABR Thoracic team to see if they could recommend treatment, but I've not heard anything yet.

 

one thing that struck me on my visit was a lack of patients but numerous doctors and nurses walking aimlessly around, with one doing a fine impression of a caged animal, it was really surreal. The thoracic doctor was in the next room to my Onco and I noticed he had no patients, and when a nurse opened his door he was drinking tea with his feet up on the desk. 

Thanks

Roy

 

 

 
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