Today Jake had treatment day 20 which on Friday now puts us 8 treatment days away from an MRI on Saturday or on the Monday following. I have been up and down with excitement and fear but mostly controlled calmness and a little sleeplessness the last two days. Jake has been doing very well and is looking better each day with a little more energy each day. Tonight, he had two minor pains in the rear of his head at the tumor site. This is the first time since about 8 days. We realize this could be caused by reduction or increase of the tumor, or swelling (edema) in other words, it could be good, bad or nothing. I am choosing to try not to think about it which is not working very well. It is a difficult thing to wait and a frightening thing to ponder. MRI results will tell us the way our life will be headed. It is certainly harder than waiting for anything I have ever waited for in my life.
In other news, I was fortunate today to talk to Dr. RV Kumar, inventor of the Cytotron machine. I had several questions about Jakes treatment and it's possiblilities. Dr. Kumar spent a lot of time explaining to Dr. Sibia the answers to my questions. Then Dr. Sibia transcribed them so they would be most accurate. The email follows below:
Dear Daniel,
Cytotron is in it’s infancy and answers to many of the questions will be more confidently known with time only. Till then it is experience and calculated opinion that will prevail.
The questions discussed with Dr.Kumar this morning were as below.
1. What is the reason that there is a 2 week break in between treatments?
The 2 week break is not necessary. It is given to take care of edema if any so that it decreases in this period and also to break the monotony. It may in fact be better not to give the break if there is no evidence (radiological or symptomatic) of edema. Less the gap the less “breathing time” the tumor cells are likely to have.
2. Is there ever a 3rd treatment that is considered. What would be the reasons?
Of the over 200 patients treated in the research and thereafter a 3rd treatment was never required. Some of these patients had cytotron treatment over 5 years back and are still okay.
Even the 2nd treatment session is done with the view of it being a back up to decrease the chances of metastasis. Theoretically a 3rd treatment session can be given if there is reason to believe that there is recurrence.
3. Being that Jake has a Glioblastoma Multiforme that as I understand tends to "seed" in different areas of the brain, how confident can we be that we have fixed the problem and not missed new areas that might develop later. I realize there are no guarantees but do you have a feeling about this?
I think the answer to the above question gives us more confidence. We can only keep our fingers crossed and hope that the success seen in other patients is repeated in Jake’s case.
4. If there is no growth, is it likely to assume that in time after the treatments the tumor Will die off or will it remain the same size. What would cause it to do either one?
Yes, we can presume that. Studies have shown that the tumor (scar / necrosis material) takes 3 to 3½ years to disappear radiologically.
4. Is it possible that Jake will have a return of left side motor function?
Dr. Rangarajan who had GBM started recovering his vision and dependence on others by the middle of the second treatment session. He was evaluated and permitted to do surgery on patients. After 2 years he was permitted to drive.
5. How would we conclude that the treatment stopped the glioblastoma given its tendency to spread?
Symptoms and regular follow up MRI should help us conclude that Cytotron stopped the glioblastoma.
So there you are. We will not know until we know. It is logical to assume that by 1 week from Monday at the latest we will know what our next step is which will either be:
1. Starting the second half of treatment if the MRI shows no growth or reduction and no swelling. (This would be the best news and would would have us return 2 weeks earlier than originally planned and in time for Jakes 20th birthday.)
2. Two week delay before the start of the next phase of therapy if there is no growth or reduction but swelling
3. Return to the States early if there is growth and no improvement for our next treatment option
Let us all hope and pray for option 1
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Dear Daniel,
This blog is not a simple blog - it is a link between the east and the west, between two cultures, between hope and dispair. It helps understanding each other's feelings, culture and aspirations better and throws light on the strong and week areas of medical science in the east and the west. Anywhere east or west, the rich or the poor, in east or west the pain and suffering of illness is the same.Most of the time we thing in terms of extremes in any situation - over time I have realized that the truth is somewhere midway. When dealing in medical science the biggest lesson is to know that there is much that we do not know - we are working to gain a litle more knowledge and a litle more experience each day so we can be of greater help to humanity over time. We welcome all information, suggestions and constructive criticism to enable us provide relief and where possible cure to those with any type of ailments.
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