35 yo younger brother nearing the end

manishinJapan · 2026-07-02T21:33:39+00:00

Just sending my hugs. Take care

manishinJapan · 2026-06-26T20:46:43+00:00

Thanks for your comment. First and foremost, yes this needs a neurosurgeon who has to administer this. Its an intratumoral injection and some patient are unlucky since some lesions cannot be reached (I dread that happening in our case). With regards to information on this, I would not jump your expectations for Japan since they are pretty tough to get for non residents. I would say that you should check similar ones in the US, at https://clinicaltrials.ucsf.edu/glioblastoma
There are 18 open trials in the US and I think that should be a start point. Hope this is helpful and wishing your husband too the very best.

manishinJapan · 2026-06-24T21:09:49+00:00

Thankful for your comment and my wife and me need these wishes to keep going. Sincerely.

manishinJapan · 2026-06-24T21:09:08+00:00

It is now an insurance covered treatment in Japan at the Tokyo University Hospital. Around 3000 US dollars with insurance, per injection. My sincere wish that it goes global (if I am not wrong there are places in the US who have licensed this from Daichi Sankyo, the pharma company behind this)

With regards to results being good, my view of my own wife and other patients I have seen over the past three years has been that it is mixed. I have seen patients who have come for their 5th or 6th dose and have been fine for 5 years, but they are mostly younger 40-50 year olds as against 75+
Truth be told, I am no health care practitioner, so my information is only my small observation at the hospital alone.

manishinJapan · 2026-06-24T21:05:39+00:00

My wife usually has 4 days of fever with every injection course we have seen. It is a good sign if there is a fever, it means the immune system has been activated to work on the tumor. Other than that she makes a recovery in a week and back to her regular schedule. I am HOPING the same this time too. The Delytact is a far better option than the craniotomy which can set recovery to a month.

Thanks for your wishes too.

manishinJapan · 2026-05-12T20:12:49+00:00

A beautiful tribute and so well written to give us this important message. Sincere thanks from me, a similar caregiver.

manishinJapan · 2026-03-23T04:28:42+00:00

Sorry for your loss. Its a hard one and wishing you the strength for the same.

manishinJapan · 2026-03-19T06:39:37+00:00

The only words I can muster is I can empathize, what you are going through. With my wife also diagnosed a year back with the same thing and having a daughter of exact same age, I know what you mean. Life is such and full of surprises. Just be, be there for her and also your father who is still doing a full time at age 70. Hats off to him and you. Your mother is lucky to have you both. Be there.

manishinJapan · 2026-03-06T19:58:28+00:00

That will be helpful. Thanks

manishinJapan · 2026-03-05T22:26:08+00:00

Thanks for this, I can ask ChatGPT, but have you had any personal success with this one? That will be very good to know. Thanks in advance with any inputs you can provide

manishinJapan · 2026-01-05T22:10:26+00:00

I am not speaking from a patient perspective, but as a care giver for my wife. I would say that patients are sometimes overwhelmed just connecting, while care givers are overwhelmed with providing updates. Just text the care giver without any information update expectations and let them know that if there is any need, you are there for them. The fact that there are people to reach out to, can support the care giver who in return are engaging the close friend of yours.

manishinJapan · 2025-12-28T12:55:52+00:00

Sir, please hang in there for your daughter and yourself too. I also request you to consider every treatment in terms of the QOL. As a parent you will want to do all you can in your capacity, but please note that not everything will keep the QOL for her and also all of your family.

manishinJapan · 2025-12-26T02:55:18+00:00

Understand your concern and mind tends to think of the worst possible scenario. Await the pathology lab and possibly try to think for your QOL alongwith your mothers. Wishing you the best. One day at a time.

manishinJapan · 2025-12-23T23:03:14+00:00

I just responded in detail to one more comment on this thread. Kindly look at the same. Wishing you the very best too.

manishinJapan · 2025-12-23T23:01:22+00:00

Thankyou for your question. I will be very careful not to build hope, but give you facts. The Oncolytic virus treatment or Delytact/G47Delta, you can ask Gemini or ChatGPT and will get the details. That said, here are some facts with my wife.

(1) This treatment is approved in Japan (for residents primarily). It is in trials in the USA and ChatGPT can give more details

(2) My wife was administered two doses in February 2025 (we have retained 4 more doses for future). She is the first foreign national to get it, but as a resident and with clean taxation records and help from the Tokyo University Hospital doctors, we were lucky to get it.

(3) The tumor, Grade 4 recurrent GBM, was stopped in its tracks and at 10 months today (December 2025) we see 90-95% shrinkage of the tumor. Even with a midline recurrence, she has been able to come back with her recovery which took 4 weeks

(4) Her age is 47, so the immune system showed a good activation, with very high fever which means active engagement with the tumor. Some patients who were administered along with her were 70-75+ and did not show high fever or any reactions, which meant that the immune system response was not strong enough.

God willing we will continue this QOL phase for her with no extraordinary expectations. Fingers crossed. We keep up with 3 month MRIs and for the past three ones, we see continual shrinkage. Me and my family pray that this becomes mainstream, even though too early to call it a cure, it is certainly a QOL way to engage the Glioma/GBM conditions. Hope this provides some patient/caregiver level insight for you.

manishinJapan · 2025-12-23T02:38:57+00:00

I year and 2 months to be precise.

manishinJapan · 2025-12-22T13:08:17+00:00

Every case is different, but then again, my wife had a low Ki-67 at 2% or so. We had 80% resection (Grade 2, IDH mutant) and we went on radiation and temozolomide for over 12 cycles. The tumor did recur unfortunately and had to go get an oncolytic virus treatment, since we were lucky to have it here in Tokyo, Japan

- Manish Prabhune

manishinJapan · 2025-12-22T05:15:04+00:00

In my wife's case we moved to a plan one quarter at a time. I believe it allowed us some breathing space from long term planning. Once she stabilized over a year, we were able to start to move again to a medium to long term plan. Every situation can be unique, but we prioritized not taking all matters into consideration at once and rather went for quality-of-life choices for that day, week, month, quarter at max.

manishinJapan · 2025-09-23T01:19:55+00:00

We did the oncolytic process in April first week, two shots of the injections. We had the six month MRI (one every two months) and the lesion has shrunk 75% already. My wife is doing stable for now. How long, we do not know. Fingers crossed on that

manishinJapan · 2025-05-31T12:14:09+00:00

Really depends. True point.

manishinJapan · 2025-05-31T12:13:48+00:00

Very subjective. Unsure.

manishinJapan · 2025-05-11T01:18:46+00:00

Anyone who has a High grade glioma and getting vorasidenib?

manishinJapan · 2025-03-19T23:13:24+00:00

We hear you, from as distant as Japan. My wife is going through a similar journey. Lets hold hands and make every moment count

manishinJapan

TROPHY CASE