Good morning from India. Charlie and I wanted to share that he feels great after his first infusion. He had a little nausea the morning after his infusion which passed quickly. Dr. Sen our physician says from the first scan 24 hours after LU177, the lesions are responding very well. Tomorrow another scan will let us know for sure how he is responding, but Charlie says the small twinge of pain in his back is gone and he feels great.
We would not be here without the help we received from you all. As many of you know, it is very hard to go overseas at the moment for treatment so we wanted to share that it is possible to travel to India. There is a lockdown but the Indian Consulate did issue us an Emergency Visa. The paperwork was a bit intense but we got through it in a week. We live near DC and were able to go to the Indian Consulate for the Visa to be placed into our passport.
We are staying at Westin in a cozy small suite. The costs of hotels and food is very affordable and in the larger room we are very comfortable since we agreed to not go out and contribute to any Covid spread. You do need a Covid test to be allowed to stay here.
The Fortis Hospital is a bit rustic but we have been treated like royalty. The treatment included being met getting off the plane, escorted through immigration and into a taxi. There have been no language difficulties. Everyone involved speaks English.
I hope this helps someone. Since we can not go to Australia and did not get much of a response from the hospitals in Germany. We could not wait for the pandemic and needed treatment ASAP. Dr. Sen was/is a blessing. She responds right away to emails and her phone is on 24/7. She also is collaborating with our doctor at Mayo Clinic. I am very thankful and impressed.
We are about to meet with Dr Kumar of APAC Biotech. They create vaccines from an individuals cancer and as I understand their technology exceeds what we have in the US with Provenge.
Take care everyone and thank you as always from all of your wisdom and support!
Paige and Charlie
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It's an autologous dendritic cell re-infusion, like Provenge. But instead of keying them to PAP (which is expressed by prostate cancer cells), it is treated with the patient's own tumor tissue. I do wonder if it will have a longer lasting effect if followed with a checkpoint blocker (like Keytruda), or if toxicity would be too high.
Hi Allan. I’m the guy that had the APCEDEN vaccines that worked so well. I am not cured, but currently have a PSA of .01. I have actually done over 50 of the vaccines to date, and my onco stateside did add Keytruda in July, 2018, and I have had about 35 infusions. The side effects together are less than either Lupron or chemo done alone. I am still NED but if I quit anything I am on PSA starts to increase. It went up to .22 in January and my onco here added Zytiga again. Zytiga actually failed me within two months back in 2017, but when they added the vaccines together they worked great bringing down my PSA. In other words I was still getting something out of Zytiga even after it quit controlling my PSA. I am now 3 and 1/2 years out from the first vaccine, and one year out from the prostatectomy. I was end stage when I wandered over to India. I am so glad Kelly and Charlie went there and found help like I did. I was fairly shocked how modern their medicine is compared to back home. And I agree with Kelly, they treat you very well, and genuinely seem like they want you to get better instead of only being concerned by the shiny like my first onco was.
Hi....I am very interested in this approach. My husband has Gleason 10, Neuroendocrine PC. We recently found a fantastic Dr. in Boston (we live in FL) to travel to see. My husband's PC....recently spread to liver and lungs. We are hoping to get this kicked back and consider future treatment options. Do you know of anyone who has been treated for Neuroendocrine PC with this form of treatment? Thanks for the reply....stay well.
I hope Fuzzyman77 doesn’t mind me mentioning him and his success with APECEDEN. While he’s had a great response, I feel it’s certainly worth us looking into.
Not at all Paige, I hope it helps someone here sometime. I wish it was available here for whoever wanted it. They have actually had pretty good results with metastatic prostate cancer. I know I've posted this before, but for those new that never saw it or those interested. First is the paper written about my case and the second is about another man in bad shape that had an incredible to me response with just six vaccines.
The scans from both of us should give us all hope they are getting closer everyday. My onco calls prostate cancer a chronic disease for the fortunate patients. I have not had any Lupron since January, 2016 for anyone curious.
Awesome news. Do you feel like their technology meets what Germany has to offer? Some here might find it helpful if you provided the contact information. Schwah
paige20180 -- AWESOME NEWS!!! As mentioned by Schwah, I am sure that any contact procedural info would be very helpful for those contemplating following your decision to treat.
Hi Schwah. I have not been to a German hospital so can not fairly compare. As a previous International Airline Pilot that flew to Munich and Zurich for a living I can say that German air traffic control is about the finest in the world and how much I enjoyed working with them. Germans tend to master skills very well.
We tried to treat in several German hospitals but were not getting anywhere. Heidelberg said they would be in touch because our doctor contacted them but were delayed. Munich was very good about letting us know they would not treat a man hormone sensitive. Homburg was not really interested and another very respected German doctor has not responded still 3 weeks later.
A gentleman on Health Unlocked responded to me when I posted we needed LU177 that he had been treated very successfully here in Gurgaon, New Delhi. At first I was skeptical. But Dr Sen and her staff were very responsive and the Indian Consulate granted us a Visa on emergency basis at a time we were desperate for help.
When Fuzzyman77 shared his story of his treatment here, I had to take a look into Fortis Memorial Research Institute and Dr Ishita Sen. She does a great job of communicating and so far my husband is doing great. I was very impressed she wanted to do another PSMA when we arrived to make sure he was till avid due to a Casodex I gave my husband trying to increase his PSMA which caused a PSA drop. She didn't want to assume anything. She wanted the evidence. I find her very through and professional. She is also wanting to collaborate with Mayo doctors. Her staff met our plane and walked us through everything. Her tells us to call her 24/7. her email is dr.ishitasen@nuclearmedicinetherapy.in. Her staff including Manav and Jitin could not have been more helpful!
The hospital is no frills. I have read men say the German hospitals are basic as well by American standards but a PET Scan is also $7000 in the US compared to a PSMA that is $400 here. Immunotherapy $70,000 but $10,500 here so we are just fine with medicine that is available and works from people that act like they really care versus shiny.
We also met with Dr. Kumar of APAC Biotech. He came to our hotel to discuss the APCEDEN Dendritic Cell Cancer Immunotherapy vaccine. We handed the PSMA done here in India and he is collaborating with Dr Sen and other doctors at Medanta and Fortis. We also need to talk to our doctor at Mayo whether it is feasible to get enough of a cancer sample off of a rib for a good vaccine and when the right time is to do this. The Lu177 treatment and the vaccine work synergistically.
Treatment is very affordable here and as you all know India lacks resources so I feel our money is going a long way to help the hospitals make a profit. The doctors go above and beyond to give very good care to International patients.
We highly recommend the Westin Hotel. They drive us to appointments. Staff is incredible.
Please reach out if we can provide more information.
Hi. We leave tomorrow. We have been here one week. I would plan 6 days. We will decide the treatment plan tomorrow with Dr Sen. Husband will do one more scan tomorrow or 48 hours after lu177. She will collaborate with our Mayo doctor to discuss possible ADT therapy or a second round of lu177 maybe in 8 weeks? Not sure yet. The scan done at the 24 hour point showed the LU177 went to the four lesions exceptionally well. Hubby said the small amount of pain he had in his back is gone. He had 4 four metastasis.
We have Dr. Kumar also at APAC Biotech looking into immunotherapy here. I feel like we have a village collaborating to discuss the next move... too soon to tell also the PSA and scans that will be the proof in the pudding.
this sounds like amazingly great news. Maybe in my future...I was just telling my partner Richard today that I regretted he didn't come a long on a big trip I did to India. Maybe we'll be going in the future?
Thanks for info and good luck all keeps going GREAT ! ! !
I am thrilled to read this post. I am glad you were both sooo brave and went for the treatment, traveling all the way to India. I hope the treatment is highly successful and long lasting! Doing the vaccine along with it seems like a good idea if it is possible.
We had the courage to go because you and Fuzzyman did the research and shared your knowledge with us. Thank you for your giving, loving heart and we are here to help anyway we can.
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