Lutetium 177 treatment

Quick update:

Second cycle of treatment went ahead at the Wellington Hospital in London on the 11th October. My OH has dealt with this second treatment really well. The radiotherapy he received for his jaw and back pain has definitely helped. 
He suffered some nausea in the first couple of weeks but this has subsided.

He is experiencing a lot of fatigue (to be expected) so we just try and plan his day so he can get rests in between his work.

He will have follow up bloods in a couple of weeks and then a scan to measure progress, at that point they will decide if he goes for another two cycles and we keep our fingers crossed that it will go ahead and the health insurers keep supporting him.

Lovely to see some sunshine this morning ☀️ 

With love to all 

SunnyJane 😎 xx 

Update: OH has had a PSMA PET/CT scan and is now having an FDG PET Scan this coming week in London. Referred by his consultant.  Luckily he has health insurance and they have agreed to fund the scans and two cycles of Lutetium. Then he will assessed as to responsive to the treatment and if he needs further cycles we hope to persuade the health insurers to keep funding. 

so many unknowns, fears, lots of travelling to get treatment but he feels it worth it to obtain innovative treatment and with less side effects than chemo. He really struggled with the docetaxel and one of his main choices for treatment going forward is quality of life. 

Will update once we have some results. 

Best wishes

SunnyJane 😊

Feeling very sad tonight after hearing the sad news about Bill Turnbull. My OH has felt very emotional all evening. 

Since I last posted we have been through a pretty rough time but things have settled in the last couple of weeks as OH has received some excellent additional care. 

After completing 6 cycles of L177 in May 2022 and then a one off blast of radiotherapy to sacrum and hip in July due to rising PSA and 9/10 pain my OH has been able to enjoy the summer and have a rest from treatment. 

He has seriously struggled mentally over last few weeks but our local hospital has set up a new service called Enhanced Supportive Care. This consists of a Palliative care consultant and an Occupational Therapist and a Physiotherapist. They are there to look at your disease and care from a more holistic viewpoint. It has really been amazing for my husband in thinking about his life now and in the future. It has helped him to figure out his life goals and think about his future wishes. He was avoiding this as he felt making such plans was admitting defeat and the end was nigh! 

What he has realised is it means these thoughts and worries are parked and he can spend his energy focusing on what he likes doing. He is very fatigued but has continued working usually 4-5 days a week. Again giving up work was a sign of defeat for my OH and he felt gave him a purpose to get out of bed every morning. He is now trying to redefine his purpose and again use his limited energy on doing what he enjoys. 

At the end of L177 his PSA had risen to 15.3 but after the radiotherapy it reduced to 11.3 and then 10.9 mid August. We had an onco consultation mid August but our usual consultant was away so we saw a locum. He has scheduled us to come back to see our usual onco early October. If bloods are stable we presume my OH will continue on current regime until PSA starts rising again. We have been told then it will be remaining options of Cabazitaxel or Radium 223. 

We paid privately (£2000) to have his original biopsies screened for the BRCA gene but sadly he is negative so the drug Olaparib will not be an option. Only 10% of men are positive but we felt it was worth trying as options run out. 

He currently feels that he will not go down the chemo route again as personally he doesn’t feel the side effects are worth the expected additional months of life he will get, but who knows when the time comes to make that decision. 

He has also started some counselling sessions at our local FORCE, these have been offered to both of us and we go as a couple which has been very beneficial. My OH has always been a man with great mental resilience and a very positive outlook on life but he has accepted this additional support and help as he can see the benefit and he recommends anyone who gets offered extra help to take it. 

I will update you all once we know what his next steps will be after future bloods and consultations. We live in hope of possible new trials and we were told by the Prof who administered the L177 there is a chance this treatment can be repeated, if so we would have to have the support and agreement of our health insurance company. 

Much love to you all

SunnyJane xx 

About 8% of men exhibit insufficient PSMA for the Lu 177 to work so a PSMA scan is a prerequisite to establish whether this is the case so having this scan will establish whether Lu 177 is viable in your OH's case.

You may find you can glean some interesting information from this thread. However, some of the early detail has since changed after it was started. It is now possible for suitable men to have the PSMA scan at a small number of centers on the NHS in the UK that do PSMA scans for example. Much of the earlier part of this thread dealt with the 68 Gal PSMA scan but later posts included those from user name 'Notabene' who had Lu 177 in Finland where it was more expensive than in Germany. Unfortunately, Notabene does not seem to have posted for quite a time. It should be remembered that the cost of cutting edge treatments can vary between centers and countries and go up and down. So one really needs to establish current costs if considering this treatment. https://community.prostatecanceruk.org/posts/t13262-Lutetium-177---PSMA-Treatment

DaveSt is another member who had Lu 177 but has not given an update since he posted in the above referenced thread back in Oct 2020.

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Edited by member 18 Jul 2021 at 03:30  | Reason: to highlight link

Wishing your husband all the very best with his further treatment. Thank you for sharing your information. Hope you are ok too. We’re at the earlier stages of this journey and I know how difficult it can be already for him but also for us. Take care 

Wow really tough week! 

My poor hubby has continued to feel really nauseous so naturally been off his food, exceptionally fatigued and very depressed. I keep reassuring him that this is a consequence of the RT and PSMA but it is so difficult when you are in the limbo stage of waiting to see if current treatment is working. He currently feels as if he is regressing, not progressing. Sadly only time will tell but this horrid disease leads to the darkest and most horrid corners of ones mind. He is very emotional and so down he says he can’t see any value he brings to anything anymore. 
This is very hard to watch, especially from someone who has always been so positive. I do remember when he was on chemo after the 3rd or 4th cycle he felt like this. 
I reminded him that he is currently having the book thrown at him in terms of treatment, he has just had his 3 monthly hormone injection, he is still taking Enzalutamide (as they feel there is still some benefit in terms of his lymph nodes) he is undergoing PSMA and he has had RT a week ago. Plus all the morphine and numerous other drugs. 
I keep telling him that it’s the treatment not the cancer making him feel this way and just offer as much love, support, kindness and care without smothering him. It’s a fine balance between supporting but not making him feel like he can’t do anything. I support him to do as much as he feels up to but if he needs to rest or sleep then reassure him that’s his body saying he needs to rest. 
I miss my husband, stupid thing to say when we are together all the time but any wife or partner watching their loved one going through this will know what I mean. 

I am hoping that this week may see some of his symptoms easing and then we head off to London on Wednesday for PSMA treatment and scans Thursday/Friday. We are hoping that bloods will all be ok to go ahead with treatment and fingers crossed he should start to see a drop in his PSA. 

Following this cycle he will be reviewed and if he is responding positively he will be offered another two cycles. 

Thank you for reading, I am not going to lie, life is tough at the moment 😔

With love to all

SunnyJane 😊 

Sunnyjane, so sorry to read your post and hear that you’re having a really hard time at the moment. 

We are in the very early stages of diagnosis so I’m lucky that my hubby still doesn’t have any symptoms (apart from a couple of HT side effects) and is feeling fit and well….I still panic at every little ache or pain though 😢 

You’ve obviously both been so strong and positive throughout this journey so far and it’s apparent just how much you have been there for him. 

I really hope he starts to improve very soon and will be feeling much better to go ahead and get his treatment later this week. 

Take care of yourself too and keep being strong. Wishing you both well and looking forward to hearing positive news from you soon xx

Edited by member 11 Oct 2021 at 01:28  | Reason: Not specified

Hi SunnyJane believe that Bill Turnbull has been receiving this treatment, stopped doing his radio program presume while having treatment, believe prior to that was having R223. May be if he can be contacted might give you more insight into long term.

Hi Sunny Jane,

Thank you for sharing the update on your husband's treatment with us.

He is obviously a strong character and I wish you both well on this uncharted journey. Moreover,hope he gets some deserved respite to build himself up before any other treatment becomes necessary.

Regards

Norm

So very sorry that the relatively rare treatment your OH had has not worked better, particularly after good early response. I hope the pain can be dealt with which is the most pressing aspect but treatment now to slow progression needed. Just to clarify for the benefit of those that may be interested, PSMA is what is expressed by a patient that enables Lutetium 177 to work or to show location of mets. It is not a form of treatment. About 8% of patients express insufficient PSMA to work as a scan which is a prerequisite for having Lutetium 177. Like so many treatments, patients can respond differently.

You are right Barry, my OH mindset is certainly about weighing up more treatment v quality of life at the moment. It is only a decision he can make and I will support whatever decision he makes. 

I think it’s a very brave decision to not have further treatment, it goes against the grain to turn down something that could give you more time with family. We are not yet at that point, we thought we were a few months ago but since then his bloods have been a bit more positive. What is interesting is it’s hard for the doctors to know whether the recent fall in his PSA is a delayed effect from the L177 or whether it is from the radiotherapy he received a couple of months ago to treat severe pain in his back or hip. 

To be honest we are not that concerned about the reasons why we are just relieved that he has not had to make that decision yet about whether to go for chemo or R223 or not and personally whatever his current thoughts or feelings are I don’t think he will finally make that decision until it’s right in front of him. 

We are focusing on making memories, we have managed to get away for a week in Spain with the family and my OH is focusing on living his life in the best way he can. 

Many thanks for your support and comments, this forum is so important in being able to hear from others who understand what we are going through. 

Much love

SunnyJane xx 

Thanks T’other Jane 😃This forum is so great that other half’s really do understand what you are going through.
Family and friends are wonderful but it is hard for them to truly understand the impact this horrid disease has on our husbands/partners and the impact their disease/condition has on their wives/partners. I have received some lovely messages from wives in a similar situation - we are not alone. 
Take care 😎 

Hi everyone 

Not been on here for a while, my OH completed his L177 in May 22 and started Radium 223 in October 22. He has had four cycles once a month and is due his 5th in February. 

However, he has had a real deterioration since October in terms of pain and mobility. After cycle 2 in November he started to swell around the face, lower back, stomach, lower legs and arms. This is a known side effect but is very uncomfortable for my husband. Between cycle 2 and 3 he gained 10kg in weight - purely fluid! 

He has also had a complete deterioration in his teeth, they have all decayed and he has had 6 fillings. But the worst issue is the pain. He started getting more pain after cycle 2 mainly in his lower back and hips and where he has significant bone mets in that area. 

The pain has resulted in a trip to Hospice care where the doctors are working hard to get the balance right in terms of pain relief v drowsiness and hallucinations. He is still working and work continued to be his therapy. 

I will update further once he is out of Hospice and back home. 
Love to everyone 

SunnyJane xx