My husband has metastatic PC. We hv been treated with the anti androgens, until the PSA started to rise again then the chemo, but after 3 treatments the PSA was only rising. Then we tried immunotherapy didn't work for us. Then estrogen which was a disaster for my husband. And then we knew about lutitium and we were happy to find it in India, of course we pay for it. We did 4 shots. After the first two the PSA has gone dramatically down. The third one it started rising slightly again. The fourth one was a week before. So we don't know the results. My Question is, the course of lutitium is only 6 shots. What if the PSA didn't go to 0.0 are we going to continue forever with lutitium? Actinium has very bad side effects, so I don't want my husband to suffer from it. I was asking is it a possibility to continue lu forever? Or do we do the 6 courses and then what? We will go to Egypt before finishing the 6 courses, so I guess we hv to fly to India everytime. Are there any new medications that are recently approved by FDA? What do we do after the 6 treatments? And if our PSA went down to zero and we stopped lu. How long does it take to rise again?
Thank you
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Nesrine
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Cabazitaxel (brand name in the US is Jevtana) is a taxane that is approved as a second-line chemo after docetaxel. A recent trial showed it is a preferred third-line treatment after docetaxel and an advanced hormonal therapy.
The side effects of Ac 225 are not that bad.Moreover,durable responses have been observed even when lutetium treatment has failed in paitents.It is a much more specific treatment when compared to any form of chemo.
Doctors will ensure that any side effect caused as a result of treatment is bearable.
Oh Lord have mercy! My heart goes out for you and your husband. I didn’t see if he had a radical prostatectomy or not. How long did he have PC prior to the anti-androgen trial. Was radiation used? I have heard the words “slow growing” a lot but your experience doesn’t sound that way. Where did the metastasis go to? With hugs and hearts to you, ZapKU
Thank you so much. No, my husband didn't remove the prostate. When we discovered the cancer it was already spread to the lymph nodes. We started with casodex, lupron and radiation. We were successful for 6 years. But then it is going down now. I mean we tried Zytiga and Xtandi and radiation again in the spine this time. Then we tried chemotherapy. Also failed. And immunotherapy and estrogen. I mean we did every single available treatment. At last I found lu. My husband has mets in his bones now. So, I was wondering if there are still other options outside
You can have more than 6 treatments with Lutetium177, until 10, that's sure. If there are bone mets, a combo treatment Lu177 and actinium 225 is better and it makes less dommages on salivary glands than actinium 225 allone.
The 6 treatments with Lu177 were only the standard for the VISION trial.
I had 4 shots Lu177, and Psa stayed at 25 for first 2 shots, but then started downward.
I began taking Xtandi after 3rd shot and after 4th shot the Psa was about 1.6 and then went down to 0.32 at 6 months after 4th shot, but its now rising again, and just what is causing that is unknown, except than CT scans 3 weeks ago showed two small active bone mets. Before Lu177, countless soft tissue and bone mets showed in PsMa scans.
Lu177 takes time to work, and at no time did I have rising Psa during my 2 Lu177 shots. If there is a rise, it can mean the Pca has become varigated, ie, some Pca is killed by Lu177, and mutated forms of Pca are not affected, so more Lu177 may be useless.
Nobody has suggested that Lu177 will give remission, and bring Psa down to undetectable. But for me, Lu177 worked far better than the preceding Docetaxel chemo.
The docs giving me Lu177 were slightly doubtful it was worth continuing with after 2nd shot but a trial here in 2016 showed many men got a similar response as I have, and the first 2 shots worked well on soft tissue mets but typically took 3 shots to begin to show progress on bone mets.
Some men in the 2016 trial went on to have 7 shots, some are alive and well. Not all the men in the trial did well, even though their PsMa scans indicated they would do well.
Some were so riddled with bone mets they were bed-ridden when they got Lu177, and even with some big reduction of Pca activity, they had so much Pca their bones were permanently damaged, and with Lu177, there is only so much it can do.
In Germany, some men are getting Lu177 plus small % of Ac225, and this is thought to avoid worse side effects of Ac225 if given in high doses.
I am not sure Cabazataxel would would work any better than Docetaxel which made my Psa move from 12 to 50 in 4 shots.
Chemo long term side effects are just horrid, and far worse than Lu177.
I have hardly any dry mouth side effect from Lu177; it seems what I did have is getting less. If I watch a sad scene in a movie I cry tears, so tear glands are unaffected.
I know a man who has has a dry mouth for 10years+ after IMRT treatment of a neck cancer. He copes fine at 78.
The next PsMa scan may tell docs more about why your husband's Psa is rising after 3 shots Lu177.
Nobody can assume anything. Its possible Lu177 has worked well as it can on Pca expressing high PsMa avidity, but not on other mets with low PsMa avidity.
But Cabazataxel may work on mets that don't respond to Lu177. Maybe DNA analysis of mets is needed and also general DNA analysed for Brca2 gene,and maybe PARP inhibitors used. This is rather expensive and high-falootin and success is not always possible. The longer treatment goes on with Psa going back up, the less chance there is that anything will work, and treatment becomes experimental. I could face exactly this problem.
Doctors can only prolong my life at 72yo for so long.
For my husband (Gleason 9), Docetaxel failed within a couple of months. (He had already failed several other treatment. After the Docetaxel, Zytega failed quickly too. Then he went on Jevtana which kept his PSA below 1.0 for a year and a half. After that his PSA went up steadily but not so very quickly. In the end he had 25 doses of Jevtana and the side effects were becoming more problematic so the MO took him off the Jevtana. I have to say that it's rare for men to do as well on Jevtana as my husband did. Still he's one example of the many men who are helped by Jevtana after Docetaxel fails.
The side effects of the Docetaxel were worse than those of the Jevtana, though I can't remember the details any more.
When Bob started the Jevatana he got Ativan concurrently and was confused and so weak that he couldn't walk down to the car. Once they stopped the Ativan and he just got Benadryl with the infusion, he was much steadier and clearer mentally, but still wiped out after each treatment. After 4 or 5 days he started feeling better. Then he did pretty well until the next infusion.
The worst side effect has been neuropathy in his hands and feet. His legs are very weak and he can't walk more than a few blocks. But he disregarded the MO's strong advice to get more exercise, so he bears some responsibility for that himself.
Still, Bob gets great pleasure from interacting with his family and friends and is happy to go out as long as we drive. He is still doing a few hours of professional work on his computer most days. From our perspective, the benefits of the Jevtana (extension of life and retaining the ability to enjoy life) have been well worth the side effects.
I have only had Lu177, without any added Ac225. But the docs at Theranostics Australia said that although I had a good response to Lu177, the reality is that some Pca I have may not have fully responded. So they suggest that when Psa rises again, which is always expected, that I might have Lu177 + small % of Ac225 which works well on bone mets.
What I do next all depends on the next lot of scans. Without scans the docs would be guessing what is best, and that is not a good way forward.
I have no idea what outcomes Chemo can give to men with Pca but some get big benefit, others get no benefit. Outcomes can't be known until the chemo is tried.
I have no idea if I will have to try Jevtana, ie, Cabazataxel, but my oncologist said its better than Docataxel. But they are similar, based on taxane, a substance that was originally found in Yew trees. You can study history of this normally toxic extract of a tree that was widely grown in UK especially in grave yards where the trees were not disturbed and where they could be easily harvested to make good long bows for medieval archers during incessant battles that went on at that time.
I cannot know if Cabazataxel might work for me after Lu177 has done all that it can.
I don't really want any more chemo, but I may be forced to have it if docs think there is nothing else, and then there is carboplatin, and even more aggressive chemo with worse side effects. There's another one above that which is available at my local hospital but right now there's no need for any chemo.
I cycled a good 84km today, and I felt 27, not 72, and speed was good, so I guess I have excellent health while I am a stage 4 cancer patient.
Only if the next PsMa scan shows it would be a good idea. Psa was 0.32 last November, 12 months after beginning 4 shots of Lu177 when Psa was 25.
Then last January Psa was 1.3, could be 3.0 now, so its high enough to get clearer indication of what might be best. CT scan reports last month said Ihave 2 active small bone mets so maybe they do IMRT, if that's all there is. But I bet more mets are there, and more Lu177 with maybe small % Ac225 added could be done. Its wait and see.
Today I cycled 84km, and felt 27, not 72.
Got home after late lunch, had a nice bath, and then the hot water tank spring a leak.
Only fix is to buy a new one, and this will be No 3 since I moved in during 1976. I can replace it myself like last one.
Nature has been extremely kind to allow me to live this well for so long, and because I was a building contractor between 1981 and 1993, there was nothing I didn't know how to do in any house I renovated or altered to earn a living. I have had to dig up the ground to find where tree roots have got into sewer pipes, maybe 3 times, then remove the roots, replace the earthenware pipes, and maybe put cement all around where I thought pipes might leak again, attracting roots. I have always done all my own plumbing and electrical and carpentry, and save vast amounts of $$$$$$.
One reason I chose to be in the building trade was to become multi skilled and highly self reliant to avoid me having to employ a builder to build my house, pay for his tax, and his profits and wages et all. I made all my own furniture I still have. Other ppl pay a lot of $$ to maintain a house, but I don't. There are some things I have decided to let a contractor do now, such as replace the swimming pool vinyl liner that is now 37years old, and a supplier says its the oldest one they know of.
We are located in Mumbai. In Mumbai there are only to hospitals with nuclear medicine. Tata Hospital and Jaslock Hospital. If you are not located in Mumbai, I can look for the email of a nuclear center in Delhi and they were the ones who helped me. The status of Jaslock Hospital, where we take our treatment, is old. No fancy hospitals here. But the medical care is good and we are quite content. Are you living in India?
We are in Florida and are considering early treatment with Lu-177, so are exploring options, and I know there are others on this site also looking at their options. We had originally contacted HCG in Bangalore, which seems geared to hosting foreigners for treatment, but is more expensive, I believe they charged around $5000 per Lu treatment and PSMA scans were $400. We have friends in Bangalore. Thank you for sharing your information.
I had contacted you earlier regarding lutetium treatment and your advice helped me a lot.The treatment at HCG as suggested by you was not afforaldable for us.However,they helped me make a an informed decision regarding my father's treatment and he had his first lutetium treatment from AIIMS Delhi on 26/2 and within a week the unbearable pain in his leg has subsided to a great extent.
AIIMS is one of the most prominent hospitals in India and has a number of branches across the country.I visited AIIMS Delhi.It offers the lutetium treatment at a very affordable rate (around 35,000 rupees per cycle)
Hi Vsahey- I'm glad it was helpful and that your Father had his first treatment with relief from pain. That is great news. Please keep us all posted on his progress. Best to you.
Hi Nesrine, I would also like to know the name of the hospital in India where you did lu177 treatment. How much was your expense per infusion. It will be helpful if you could share your experience in the hospital.
We take our treatment in Jaslok Hospital in Mumbai. The one treatment is about USD 2500.00. We hv to take 6 treatments altogether.
Jaslock Hospital is very old, so it is far away from fancy. I know that they are renovating. So you can ask them to put you there. We never found a vacancy though. The medical care is really good and reliable. If you are not living in Mumbai. I will look for the address I contacted earlier to find this Hospital.
Do not worry a lot.Even after Lu you have got other options like cabazitaxel and Ac 225.There can also be combination of Lu and Ac to prevent severe side effect.Then you have got a no. of clinical trials.You need to look for them and contact the person concerned beforehand so that you can compare the various options available and thus make the best choice.
Whilst PSA increases are not a good sign it is critical that you get some imaging done (CT scans or better PET PSMA+/-FDG) to assess any improvement, noting that some regression of PC may continue to occur into the future, due to delayed effects of Lu177. If the Lu177 treatment is working stick with it. If not? Depending on when you last tried chemo, I would revisit that; preferably carbazitaxel, if you can afford it. I can't comment on the value of Ac225.
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