Since 2019 this is my third round to India. Still Chemo naive. This time it will be a little different. I will be receiving a novel treatment . A combo of Lu-177 & Ac-225. To protect my salivary glands a new procedure involving ultrasound to locate and Botox to shut them down prior too infusion.
I leave this Saturday. I do have support from my MO and we have a plan after I return . Not going to write a lengthy post but stand by. Sometime starting in 2025 I will address the next step.
Blue Skies ,
Sky King and Penny (woof)
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pilot52
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Interestingly, I was thinking about you yesterday and wondering how you were faring. Good for you still in the fight and following up overseas with your radioligand treatment. The combination of the two infusion substances is an important alteration, and I’ll be curious to learn how the treatments go. Hopefully, those of us like yourself who have not had HT nor chemo may live long enough to see the SOC and COE based medicine community expand their radioligand treatments wider to include a lesser extensively chemically treated group PCa patients. Of course inclusion of a wider group of patients by our physicians is dependent upon expansion by the drug manufacturer and the medical insurance industrial complexes. Looking forward to your updates. Travel safely.
The travel is the best part...Air Qatar not these USA garbage trucks , after 5 trips even I figured it out.....Atlanta- Doah-Delhi.....wonderful if you have to go..
It’s inspiring to hear you have been fighting the beast with Lu-177 since 2019 chemo naive.
I went to India in 2022 three times for three infusions of LU-177. (Chemo naive as well) I was working with Dr. Sen. At that time they didn’t have the combo treatment with the alpha. Please share how it works out and where you are getting the salivary glands protected? USA or India. I’d like to have that contact for future use myself.
Read the article I sent Tall. Braum was one of four who worked on this..Children who have over active salivary glands get this injection which led them down the path. I will have a plastic surgeon in India with the aid of ultra sound inject me..We have planned two trips. Plus once I return we have perhaps another surprise...I will in a few months repost on results but at this time I have nothing.....thank you
you are a fellow PCa outside-the-box non SOC adventurer. Sounds excellent and anticipating a good response. Good travels in the Blue Skies. Woof! MateoBeach
hi got update for you. Dr.Sen has been working with Ac since 2015. Dose adjustment has led to no real dry eye problems. I had ultrasound guided Botox on Monday. One doctor used the US probe to actively guide the plastic surgeon where to position needle . Had 6 to 8 points a side. Parotid and submandibular . Since I posed the question to Sen she did inquire and was told tear ducts are too small and too close to eyes which would risk injury. I had Ac yesterday half dose and will receive less than standard doe of Lu on Friday. Keep in mind here they give a stronger dose of Lu and fewer rounds. So I still will receive a slightly higher dose than USA protocol. I have read where this seems to be more advantageous. Makes one wonder if the 6 dose regiment is not financially driven. Ishita is very conservative about toxicity. I have had no problems going back to 2020. So today PSMA scan and Lu on Friday then I catch the freedom bird home Saturday. The journey continues. When my second round is due and by the way will be my last it may only be LU. At this point in my treatment everything is personalized. Once home here is the kicker. Once home if the stars line up two rounds of Taxane chemo to clean up . They now are using this with success with Lu alone so we shall see. Blue Skies
I remember when they lowered the Lu dose/treatment in the US because of salivary gland and kidney toxicity. There are always trade-offs. I'm hoping that some of the ligands they are experimenting with will be more specific and less toxic at higher doses. It sounds like you are getting great individualized care there. Taxane seems like a good next step.
ok, quick up date , Ac-225 after Botox and today Lu.177. One hour later had dosimeter scan . Uptake is beginning to take hold. Very minute uptake in salivary glands. Will scan Monday before I return. Multiple tumors but all bone. Ac will not scan . Later. Blue Skies
Mild to moderate injection pain was experienced by all patients and resolved immediately. Injection pain was more pronounced in the parotid glands. One injection-related local hematoma occurred in a patient with thrombocytopenia.
The most frequent BTX-related side-effect was dry mouth of mild severity. Patient 1 who received a total dose of 150 units IncoA reported a mild flu-like painful swallowing episode which lasted for one week and resolved without intervention. Patients 6 + 8 had pre-existing moderate xerostomia after previous chemo- and radiation therapies that remained unchanged (see Table 1).
No dysphagia, facial weakness, eyelid-drop, conjunctivitis, stomatitis, chewing or breathing difficulties were observed. No patient showed distant or systemic side-effects.
Follow-up: at the time of manuscript submission, four of the ten patients had completed two Ac-PSMA cycles and were scheduled for their third and fourth Actinium-225- Prostate Specific Membrane Antigen (Ac-PSMA) radiotherapy (RT). Combined unprovoked and provoked saliva production 16–20 weeks after the first IncoA injection resulted in a mean 29% [range 25–31%] loss (or mean 71% preservation) of saliva production as compared to around 60–70% salivary gland destruction following two cycles of unprotected Ac-PSMA [3].
Concomitant medication: the concomitant medication is summarized in Table 2. All patients received endocrine therapies and all patients used at least one pain medication constantly. Seven patients received additional transdermal scopolamine during a period of 72 h prior PSMA-radioligand therapy.
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Joerg Mueller,1,* Thomas Langbein,2 Aditi Mishra,3 and Richard P. Baum3 ▸ Author information ▸ Article notes ▸ Copyright and License information
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