After 4 Docetaxel and 2 Cabazitaxel infusions, PSA went up from 99 in mid June to 821(676) last measured. On Monday night this week, my husband could not walk to go to the bathroom and was in immense pain in his left hip and leg. The MRI done in early September showed 3 spine mets L1, L2 and T8 as well as activity at the top of femur bilaterally, in addition to the pelvic disease identified before the scan. Given the leg weakness and the pain, we contacted the doctor who arranged for a hospital visit for assessment. The x-ray showed no fracture of the left femur which might have caused the pain and the MRI done today showed increased size of the spinal and other pelvic tumours as also a few new spots on the spine. The MO was not our usual one but she said that the pain in the left leg was most probably caused by the cancer but that there was no risk of spine compression.
We are due to give him a third Cabazitaxel infusion on the 22 October. The MO next week will suggest radiation as spot treatment for pain probably. Lu177 is either approved or about to be approved in the UK but our hospital does not mention anything about it. I would like for him to be given a PSMA scan to see the level of PSMA expression. Royal Marsden had suggested waiting for at least 3 infusions before doing a CT scan. It is not looking like that infusion will necessarily help. We have short term pain relief been prescribed. ALP is not particularly high at 132. We have seen it as low as 56 in the past. LDH has been high in the last few measurements. I am not sure what to do as the next best treatment and what our realistic options are in the UK. Flying out to another country is not looking like a practical option at this time due to pain and discomfort.
Thank you.
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spw1
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Hi thank you. We are considering trials in London at the Royal Marsden or the UCLH but any further travel would be difficult at the moment. We need something to stop the march of the cancer so that we can get a breather to put a treatment in place.
I had severe right leg and groin pain about 9 months ago (before I was Dx'd with PCa) that I thought was sciatic nerve pain due to a muscle knot. I had some osteopathic treatment and that cleared it. At Dx it turned out I had a large lesion on my pelvic bone which I now know was pressing on nerves causing the pain down the leg.
I started ADT 3 months ago and over the weekend, the excruciating leg/groin pain returned! I'm taking pain killers for it but now I know it's due to PCa, I doubt an osteopath will want to touch it. If it doesn't improve in a few days, I'll contact my care team.
Perhaps your husband's leg/hip pain is similarly caused?
My husband has had sciatica in the past. But it had gone away. This is now a pain killer territory much more than in the past. Sorry to hear about your pain.
We have a meeting with MO next week and a referral to RO; the latter will be the person to discuss SBRT options with. Given the number of mets now I would rather they offer Lu177.
That rings a bell. I am afraid, my husband has been prescribed some morphine for the pain as the ibuprofen and paracitamol combo was not enough. Dexamethasone also helped in a big way over 2 days but they administered that dose in the hospital under supervision.
xofigo is available on NHS but not sure if they will give it if he is in pain but u can ask. You can get LU 177 in London but unfortunatelyu you need to pay for it and you will need a psma scan first.
Pluvicto is not allowed for 6 months following Xofigo. But I'm not sure that Pluvicto is any better than Xofigo. There's a chart in my 2016 article that shows differences:
TA could you tell me do you need two different types of chemotherapy for Lu177 or is two treatments of taxotere sufficient? Also if bone marrow is compromised are you still eligible? My husband has already had Xofigo
Only one type is necessary.If he can't take a full course of chemo, that's OK too. There are limits on blood work. It has to be at least 6 months since Xofigo.
i an electrical engineer studied biomedical engineering but I was mainly working on military projets. Still i am interested in medicine but I am happy that I am not a doctor. My sister is a doctor and my whole family worked as health care workers.
i like more thinking about products than about people.
it is not recommended to have Xofigo without zoledronic acid (Zometa) or denosumab (Prolia) especially if he was on Abiraterone plus Prednisone therapy.
Alpha radiation from Xofigo can cause bone fractions.
i just received my 68GA-PSMA PET,/CT scan results and it looks that all my bone mets resolved.
i only have now cancer in my prostate SUV max 14.
i am going next week to my local Genesis Care to consider SBRT.
it is not recommended to have Xofigo without zoledronic acid (Zometa) or denosumab (Prolia) especially if he was on Abiraterone plus Prednisone therapy.
if your husband has bone mets than Lutetium PSMA therapy is maybe not be very helpful. Maybe you should combine it with Actinium 225 PSMA therapy. You have it in Germany.
Levicky, our member was there and he is of ADT for around 2 years after Lutetium/actinium therapy in Heidelberg university.
you could at least read his profile
at least read the inclusion/exclusion criterias for the clinical trials in USA what i posted to you.
do the guardant 360 liquid biopsy and Keytruda could be useful
i am sure you could have a consult even from England about the best steps in his treatment
if Xofigo is paid by the NHS, than it should be your next treatment in combination with a drug (maybe Keytruda or Olaparib ) you will see this from the liquid biopsy.
Very strange for me that your oncologist didn't recommend Prolia if Xofigo is free and he has bone mets and pain.
can you ask for second opinion even if you have to have a phone consult with professor Hofman. He could explain you better about Lutetium PSMA therapy possibilities and limitations.
There is a lot in your replies that is helpful and needs a follow up. I have to go to work all day today and part of tomorrow but will be onto these tips as soon as I can. Thank you.
The whole team at the local hospital is involved in discussions. We would have to move to change doctors but our problem is not with the doctors, it is the system. They told me today that Lu177 is available only for neuroendocrine tumours and not prostate cancer.
i don't understand why they don't give you bone medication and then Xofigo? I believe that you said that it is free in England.
why don't you send a private message to Brysonal and ask him how could you do a guardant 360 liquid biopsy? Maybe you are eligible for Olaparib or Keytruda?
I think that they just move slowly here. I am told that PARP inhibitor is out of the question, not SOC. They will probably do the Zometa maybe followed by Ra223. The referral to community care makes me worry that they do not want to do much more than pain relief.
i am giving you TA link again compering Xofigo with Lutetium.
it is important to know the limitations of each therapy. You can't really insist on Lutetium if you have lots of painful bone mets. Xofigo is alpha particle emiter while Lutetium PSMA therapy is Betta particle emiter. You need bone medication before even considering alpha particle emiter Xofigo. Xofigo can go everywhere into your bones and rip them apart. Therefore you need bone medication Prolia or Zometa.
The GP practice is v slow to do anything . They took Zoladex off repeat prescription which used to enable me to order it online. They wanted a clinician to test the need for it. The MO's team emailed them to keep it going.
i declined to take Zometa or denosumab Prolia as I don't intend to use Abiraterone plus Prednisone and I don't have money for Xofigo. Unlike in England here the cost is 60k A$ for Xofigo.
In my opinion I think Lu177 is in a different league to Ra223. My team in Vancouver , Canada have offered it but say the data does not typically give major benefits.. If no Lu177 on the horizon , Ra223 is an option that could quickly work to reduce tumour pain, and at a cheaper cost, particularly if not covered by insurance.
In your position I would do a PSMA PET to see if PSMA avid. My plan was to get Lu177/ Ac225 (alpha emitter) in India but I should have done it a year ago, but no pain then. Now I am on a clinical trial PR21 comparing Lu177 to SOC chemo. Selectively zap those tumours with very little side effects.
Thank you. If my husband were not in discomfort, we would be on the next flight to India. He had a PSMA PET Scan in June which showed some avidity but also heterogeneity. That is why he flew back to do a systemic with chemo to reduce the burden. Never thought that the chemo would not touch his cancer.
If Tall .Allen is recommending Xofigo they’ll with bone pain, it’s very likely goof to take. Sure throw in a bone med as well. And I stick by Li177 at this time as well but check with Nee Delhi Ishita first to get her opinion.
What were the SUVs of the Mets in the PSMA scan. Higher the better for Lu177 to get in and zap. My understanding is when I saw mine at 20 to 60 that was good. Cancer cells not avid do have opportunity to carry on growing so Lu177 not going to be the complete magic bullet but I’m thinking other drugs can take care of the non OSMA avid cells, whether that be BAT, chemo, Zytiga again, or that new drug in in a company pipeline.
If you can get the pain under control by say opioids for example, maybe India can become an option. I used Indomethicin to control pain to negligible for a year but I do not see othrr people using this. And/ or make sure India/ other Lu177 destinations will let you use Xofigo and then Lu177.
He is not on bone medication yet. Therefore Xofigo infusions would be risky.
Lutetium therapy is not feasible for him until the liquid biopsy results come back.
his only chance is to get the guardant 360 liquid biopsy and hope that he could benefit from Olaparib or Keytruda.
The problem is that they need to wait 4 weeks for the liquid biopsy results.
and they don't even know if someone is doing the liquid biopsy in England.
i believe that they are doing liquid biopsy in but for us unknown reason (for the same reason that they didn't prescribed them a bone medication,) they are just not getting neither the bone medication nor the liquid biopsy.
I do not know Indomethicin. But with Dexamethasone (to be tapered off soon) and morphine slow release and paracetamol and ibuprofen - pain is manageable. India will involve a long flight and sitting around at airports. Would be nice if we can arrange a PSMA scan before we do that. No point in putting him through all that only to arrive there to find that there is not much PSMA avidity.
In June, my husband showed one spot with the highest SUB 15.72, two others with 3.58 or something similar. That is why we did not try Lu177 because there was activity in a few other spots without PSMA avidity
Between my first and second PSMA SCANS DEC 2020 and August 2022 , as the tumours get bigger I founnd that SUV increased too. I repeated PSMA to make sure still avid if I was going to travel all the way to India. India was going to be around US$6500 per Lu177 infusion. Highest I have seen is like US$20000 in Austria. … what a difference and probably both sourced from Germany ( New Delhi, India told me they get Lu177 from Germany. Good luck😊
Ah That is helpful to know. It maybe that a scan now would give a different result. Shame that the UK is so behind in offering useful treatments to other countries.
Maybe UK not that far off Canada. Lu 177 only got approved end of August 2022 by Health Canada and the US FDA only approved Lu177 in March 2022 and you need prior chemo to qualify. Germany and Australia way ahead with Lu177 and current clinical trials with Lu177 and Ac225.
FYI I can’t give blood in Canada because I was made in England and because of Mad Cow disease in England. We just have to think both inside the box ( SOC) and outside of it ( what other countries offer/are doing)
But globally Prostate cancer is getting more and more research $$$ so we just have to hang in there.
Canada and UK still have to pay out of pocket for PSA.tests . Only $30 but that one I really object to given my prostate cancer history.
I hope that my husband can hang in there for all the research to throw up something useful. You should not really have to pay for PSA tests once cancer is diagnosed. I think that all men should be given a free test every 5 years and if the PSA is higher than 3 or 4, they should be given more frequently.
I think PSA testing needs to be every year after 50 years old with a combo DRE and OSA test. I do get all my treatments and drugs free now I am with the local cancer agency and my clinical trial is free… saves me India which would have cost time and probably around $30000 for 3 infusions worth of Lu177 and travel, hotel , meals India is also way cheaper for food and hotel compared to Europe.
It is good to hear that you are getting the treatments and drugs free. DREs never identified anything for my husband but the urologist ignored rising PSA. We believed him when he said PCa is the slowest growing cancer that 80 year old will have but something else will take them. Had he not delayed the biopsy, it would have been diagnosed sooner. Made it more of an uphill struggle for us.
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