First MRI since radiotherapy with cyber knife

[photog1]

 Well, since I haven't gotten any responses lately about the strange surgical procedure, it must be a very rare operation.  This is the first I have heard of it.  My friend hasn't said anything more about it, told me yesterday he is managing okay, taking things a day at a time.  That, I think, is a little victory for him.  It must have been a good day for him and maybe he won't need the operation.  He is getting by without taking any more steroids, no medication as far as I know. 

My friend has invited me to come visit him in the U.K. in September and I plan to go!  He and I are very excited about meeting each other for the first time.  I'm hoping the fact that I'm coming there soon will help him feel better and that he will have much better days ahead from here on.  Next month should be time for his 6-month MRI, if they count from his first CK treatment of last February.

Hoping for the best for him.
Tina

[photog1]

I'm very curious to know, has anyone recovered well from CK radiation without taking the steroid medication more often than one session?  My UK friend took the steroids for about a month last March-April, then had his second CK treatment in late April.  He has since been suffering through nearly constant swelling of his tumor, yet he is not taking the steroids to help the swelling.  What I'm trying to ask is, has anyone's tumor swelling gone down on its own and how long did it take?  Didn't the long-term swelling cause any damage to other nerves close to the tumor?  I really need to know, because I'm very concerned about him.  Thanks so much!
Tina   

[photog1]

My UK friend will have his 6-month MRI tomorrow, at last!  Anxious to hear the results when he gets them.  Hoping and praying it will be good news for him.
Tina

[PaulW]

Hi Tina,
The first MRI at 6 months can certainly create a lot of anxiety, so be prepared for the likely results...
First of all small tumours in particular often show no sign of death (Necrosis). This is normal.

Seeing necrosis has no bearing on the eventual success of the treatment or not.

Secondly Tumours often swell.... So there is a very good chance the tumour will be bigger than when treated....
This is also completely normal....

So if the tumour is bigger and looks the same, don't panic, its all completely normal.

Keep the faith that 98% of all people treated with Cyberknife for non NF2 AN's need no further treatment at 5 Years.
If the tumour is small the odds are even better.

This is a long process and the 3 and 5 year MRI's probably better indicators of where its going.

[photog1]

Thank you so much for that information, Paul, which is so helpful to know.  I've seen in a lot of patients' cases that it is more likely that no changes will be visible yet at the 6-month MRI -- that the only thing will be that the tumor is still swollen.  I've continued to tell my friend what you had said earlier -- that 90% of the battle is a positive attitude.  I think knowing that has helped him to some extent, yet he has also lapsed into bouts of despair, depression and feeling of hopelessness.  He has been going through all this by himself all along, no family support and I don't know how much his friends know so they can offer support.  I have continued to give him a lot of support from my end.  He does feel excited over my coming to visit him 5 1/2 weeks from today, so that is keeping him in a positive frame of mind.   He said he will be able to pick me up from the airport but won't be up yet to driving me around to show me the beautiful outskirts of his hometown of Birmingham, UK.  Apparently, his driving is still limited due to the dizziness and vertigo, so I know his tumor is still swollen.  To what extent right now, I don't know.  At least we will have plenty of time to talk and get to know each other in person, at last.   

He had his MRI with contrast.  Do you know about how long it takes for the results to come back?  I've already told him not to despair if there are no changes in the tumor, except continued swelling.  I just hope he will believe me when I tell him the swelling and everything else is all normal.  But, of course, I am hoping and praying for some good, encouraging news, for his sake.  The stress of continuing to direct his own, large manufacturing company is overwhelming enough for him.

This visit to my friend in the UK will be the first time we will be able to meet, in person.  So, this is a monumental time for both of us.  It's also my first trip to Europe.

Thanks very much, again.  You are a great help!!!
Tina

[rodneyd]

Hi Tina,

I had my last MRI on July 10 and the results were back on July 11.  Swedish Medical Center in Seattle, Wa.

Hope this helps,

Rod

[photog1]

Thanks, Rodneyd.  My friend said contrast would be used for his MRI.  He said the contrast makes him nauseated.  Does contrast affect how long it takes for the results to come in?  How were the results of your MRI last month?

[photog1]

I forgot to mention my friend told me that he was also having a blood test done last week when he had his MRI checkup.  Has anyone had to also have blood drawn when having their MRI checkup?  Maybe this was being done for an unrelated medical issue.  I don't know.  I'm feeling concerned because I haven't heard from him since before his MRI.  He did say that the contrast with the MRI makes him sick to his stomach.

Thanks,
Tina 

[photog1]

I finally heard from my UK friend with his 6-month MRI results.  As expected, his tumor is still swollen, and not yet showing signs of dying off.  Can't get info. from him as to what size his tumor is right now.  I was surprised that he said his doctors were surprised it's still swollen and not starting to die off yet, given how much time has passed since the CK treatment.  And, he doesn't sound all that concerned about it.  I can only think that maybe he still has some head wonkiness and some cognitive issues.  Could that be the case?   Or, maybe he's in denial?

Paul, I think it is interesting that you mentioned the smaller tumors are harder to deal with, or are slower to die off.   I wonder why that is the case.  My friend's was 1.7 cm at diagnosis last February.   Thanks again for that latest post from you.  Your posts are always very informative.

Thanks,
Tina 

[PaulW]

Tumours can swell for up to two years.. Sometimes more.

When the tumour receives radiation it can affect the blood vessels and the flow of blood through the tumour. The contrast dye which is in your blood lights up

If there is poor blood flow there will be a dark spot.

Poor blood flow may help the tumour die... But not necessarily.
Small tumours often show no change in consistency, chances of a successful treatment with radiation favours smaller tumours.
The main mechanism for tumour death is thought to be damage to the tumour cells DNA, and not blood flow.

[photog1]

Thank you, Paul, for that interesting information.  Maybe that is why my friend had the blood test at the time of his MRI.  I hope he doesn't need to go through any more CK treatments from here on.  It looks like a watch-and-wait situation regarding the swelling now, and how long it will last.  I think he has gotten used to it.  He is so excited and happy about meeting and seeing me for the first time in another month, he doesn't seem bothered by the swelling at all.  I'm happy to see that he is in such good spirits.  He needs that.  Many times I have reminded him of your advice that "90% of the battle is a positive attitude."  The best advice anyone could receive!  Thanks again very much!
Tina

[PaulW]

Some people get a reaction to the gadolinium dye. In severe cases it causes the kidneys to fail.
People at risk are those with existing kidney disease. The blood test was probably to test kidney function. They won't give the dye to people who fail the blood test

[keithmac]

Wouldn't a blood test be carried out well before the scan?  Mine was.

[photog1]

Paul, that dye you mentioned, I'm assuming it's the contrast dye used for the MRI?  My friend said it makes him sick to his stomach.  So, he's had the contrast before.

It makes sense to me that the blood test would be taken before the MRI.  The results come in in a day or so.  Maybe the same day.

Thanks,
Tina

[photog1]

I'm happily anticipating the opportunity to meet my UK friend, soon.  He has been feeling much better and I feel encouraged for him. 
Tina