I was advised that LU treatments can significantly injure or destroy salivary glands because they also exhibit PSMA. Can anyone comment on the side effects of this treatment and especially if they had resulting dry mouth and if so, how serious and for how long?
Thanks for any feedback you can give me.
In the VISION trial, dry mouth occurred in 39% of patients, but was never a serious adverse effect. It is usually temporary with Lu177PSMA, but may be more lasting with Ac225PSMA.
prostatecancer.news/2021/01...
Thank you for your quick reply and willingness to share your knowledge
I had Lu 177 PSMA treatment and nothing happened to my salivary glands. Lu 177 PSMA may affect the salivary glands but they usually recovery.
There is confusion with the effects of Ac 225 PSMA which could destroy permanently the salivary glands causing a chronic reduction in the production of saliva leading to serious problem for eating. digestion, swallowing etc.
It attacks your kidneys and salivary glànds.
Make sure you do a full kidney panel of tests before during and after.
Temporary loss of salivary glànds may be tolerable. Permanent loss is as bad as the disease you are attempting to cure.
You never want to trust a urologist about the need for post operation diapers. They always underestimate.
I am inclined to similarly distrust radiation oncologist assessments of salivary and renal damage.
How exactly are they truly measuring it over what period of time, and do you really think they are measuring it over a lifetime (trick question, of course they aren't. LoL)
There is a reason they limit the number of these treatments they will give you.
This treatment should be used only if there are really really good reasons not to use others.
Get some second opinions for alternative treatments before pulling the trigger on this one.
It seems to me a no brainer to try bipolar androgen therapy for a few months before trying this treatment.
BAT actually is good for you. It works for about 50 percent of patients. And when it works it works really well.
Those 177 treatments aren't magic. They should be approached with caution and care and multiple second opinions from Docs who use other types of treatments.
In my opinion anyway.
Had 2 treatments of LU177 with no loss of saliva glands. Just had my first AC225 and I noticed a big difference. I definitely have lost some function of saliva glands and frequently have cotton mouth. However, I still produce salvia and have little problem eating.
I have had 2 infusions of Lu 177 PSMA treatments and nothing happened to my salivary glands. I had no side effects. The Lu 177 reduced my PSA from 50 to .56. I am currently on Zytiga to see the impact on my PSA. I am keen to try other treatments before moving back to Lu 177 if necessary.
Happy that it worked for you. Thanks for your response.
I’ve had 6 LU177 treatments so far with no noticeable effect on my salivary glands.
Glad that you had no problem. Was the treatment beneficial? Where did you receive it?
Had done my third infusion of LU 177 in late Sept. The effect on salivary glands is definitely tolerable...PSA level has dropped to 0.227. Will be doing a major PET/PSMA scan this coming week to ascertain the progress of the treatment before deciding if the 4th infusion is needed. Hope this helps
Great result. Where did you get your treatment?
Do you know what your doses were?
My apology..I dont...
It is on your final radiation report which you can access via the medical portals which most if notall hospitals have. I have also linked my Mass Gen Hosp to my Lahey Clinic portal and Memorial Sloan Kettering and Weill Cornell so any of those doctors and i can see all the test results. You should look into this it is really important to know all your test results.
Hi I have had 4x Lu 177 PSMA treatments and nothing happened to my salivary glands. I had ice bags to cool down my salivary glands during the hole treatment. ("20 minutes infusion and 5 hours after) I have had no side effect.
Glad to hear that you didn’t have side effects. Could u tell me where you got your treatment and was it successfull?
Hi Shipoo. I got the treatment at the Docrates cancer clinic in Finland. (I'm Danish so it's only a 1,5 hours flight from Denmark) I was diagnosed in 2015 and have had RP, Chemo, and radiotherapy along the way. In may 2020 I became resistent to Bicalutamide and PSA rose to 1,2. I was then given Pamorelin (Triptorelin). PSA became undetectable. But already in aug. 2020 PSA rose to 1,3. I was informed I had also become castrate resistant to Pamorelin (Triptorelin) and a PSMA PET found a 32mm tissue metastases that overlaped a priviosly radiated area by 1 square cm. I was informed this could not be re-radiated or removed by surgery. My Danish doctors told me Xtandi and 2. line Chemo was my only options. I then went for a second opinion at Docrates in Finland. Here they first performed several blod tests and scans on me. Scans showed the 32mm tissue metastases was the only visible metastases. And I was restaged to locally advanced PC. They then came up with a plan to use Lu177 to shrink the 32mm metastases so it would be outside of the pre-radiated area and after that they would radiate it. I then had 2x Lu177 treatments in nov. dec. 2020 and 2X Lu177 treatments in feb. marts. 2021. After that PSMA PET scans showed my metastases and shrunk in size so it was safe to radiate it. I then had 32 radiation treatments at Docrates in Finland in all of may 2021 (Yes it was a loooong stay). End of may 2021 my PSA was <0,05 (Non detectable) My only current treatment is still Pamorelin (Triptorelin). Medication I got resistent to back in aug. 2020.
Thank you for sharing. Stay well
Hi, can you recall the dose per shot and over all dose you received in GBq ?
Hi no sorry. The radiation therapy was performed in Europe/Finland.They use Gy and not GBq metric.
Gy and GBq are a international measurement. GBq is the intensity of the radioactive source and Gy is the dose to the tissue in gamma rays.I knew there was a difference so i had to look it up. Here is a good article with a little history of the pioneers and the Difference between beta gamma and alpha rays.
My husband has not had salivary glands for approximately a year. It was Keytruda that caused this. He has found that eating applesauce with everything has helped. He has tried every single over the counter option - nothing helped. His dentist did recommend heavy a duty toothpaste rx and mouth guards for the toothpaste as the zero saliva will be harmful to your teeth.
I’m sorry to hear about what he has been going through. Hopefully he will find relief
Do you know what dose he was given?
I"ll have to check. We are on vaca at the moment. It was a clinical trial.
Im sorry to hear about your husband loosing his salivary glands. Have you looked into hyperbaric oxygen therapy? It is approved for radiation damage from cancer treatments
I'll ask the MO to check it out for him. Our neighbors are in the Hyperbaric biz - have not tried it yet but might do it in the future. Thanks
There is a difference between home hyperbaric and hospital grade hyperbaric. The home one goes to only 1.3 atmospheres which is equivalent to 44’ below sea level you also breath about 97% oxygen while hospital grade is 3 atmospheres is about 99’ below sea level and you breath 99% oxygen. The hospital one is much more effective for less visits and insurance pays for radiation damage. I bought at home one and it requires many more dives and you have to be nimble to get in it where the hospital ones is very easy and comfortable.
Appreciate the tips. The Keytruda Saliva disaster is getting a little better. If Lu177 comes into play, it's possible the side effects will return.
Out of all the replies i dont see what dose level of 177-Lu people got.I am trying to figure out what it means in this phase 1trial NCT05079698
“Proportion of subjects with dose limiting toxicity (DLT) of fractionated dose of 177Lu-PSMA-617 ”. I get worried about phase 1 trials because of dosing.
From what i have read is the FDA approved safe dose for use on CRPC was max dose of 32.9 BBq with each inj being between 3.6 to 7.4 GBq.
Is it possible that this being a phase 1 trial that they would give me more than that for CSPC ?
Here is the information on this phase 1 trial.
Drug: 177Lu-PSMA-617
Intravenous (IV) infusion of 177Lu-PSMA-617 on Day 1 of treatment Cycles 1 and 2.
Procedure: Stereotactic Body Radiotherapy (SBRT)
No later than 5 weeks (+/- 7 days) after the 2nd cycle of 177Lu-PSMA-617, patients will then undergo SBRT (900 cGy x 3 fractions).
I'm not sure if you are curious about salivary side effects, the clinical trial, or both? You could certainly get a definitive answer on the trial by contacting the investigators.
But I'll take the temptation to speculate. The study description says that they are looking to assess adverse effects from the combination of 27 Gy of SBRT to mets and an unspecified dose of 177Lu-PSMA-617 in relatively rapid succession. My read between the lines is that they want to move down the path of determining whether the combination of the systemic 177Lu-PSMA-617 with point SBRT will help eliminate disease better than either treatment alone, and this is the first step they have to take down that path. I think that it's an interesting question, as I'd think that the 177Lu-PSMA-617 would search out and destroy anything big enough to attract enough of the drug; the SBRT would give a greater knockout punch to the larger known mets. I would speculate that they wouldn't be administering a crazy dose of the 177Lu-PSMA-617, and I would guess that it's something like the standard 7.4 Gbq used in the VISION trial.
But then the OP is asking about side effects. I had five treatments in Germany that ranged from 7.4 to 9.5 GBq. After my first few treatments I had some dry mouth that recovered after several weeks; by the end of the five treatments I didn't recover completely. What I notice is that if I munch on some (dry) crackers, I really need some water to wash them down, my own saliva isn't enough anymore. Then again, I went about 21 months until my next treatment, which was SBRT to a lymph node that didn't totally get put to sleep by the treatment. I'd do it again in a heartbeat.
Article: FDA grants 177Lu-PSMA-617 breakthrough designation for mCRPC
Opinions on Lu-PSMA-617 Clinical Trial
Choose Capivasertib or 177Lu-PSMA-617 clinical trial or stick with ADT + radiation?
177Lu+225Ac or 177Lu?
Lutetium-177 PSMA-617 (LuPSMA) therapy
