First MRI scan results post Cyberknife

HellieC

Well, ladies, the first results are in!  My oncologist rang me today and told me the tumour has shrunk (was 4.1 x 3.8 x 2.8 cms now is 3.6 x 3.7 x 2.0 cms).  This is very good news.  We weren't expecting huge shrinkage, as the tumour is mixed up with scar tissue which will never disappear, but any shrinkage is a good sign that something is happening.  Apparently, there was also a signal change on the scan (I think this means that the intensity of the signal that the scanner receives is different - again meaning that something is changing with the mass).  No other changes or tumours reported other than the ureter dilation which we knew about. All in all, it's been  a good day.  Currently doing my happy dance!

Kindest wishes
Helen

molimoli

Happy Dance with Helen.

YEA !!!, Thanks to the creator for small mercies. They will add up.

We are on team Helen  dancing with you in thoughts and spirit. nuff, nuff blessings.

                                                                     Moli.

 

 

ConnieSW

molimoli said:

Happy Dance with Helen.

YEA !!!, Thanks to the creator for small mercies. They will add up.

We are on team Helen  dancing with you in thoughts and spirit. nuff, nuff blessings.

                                                                     Moli.

 

 

Helen

I have tears in my eyes.  So very pleased for you.  Wait till Ro reads this.  OMG, words fail me.

Abbycat2

ConnieSW said:

Helen

I have tears in my eyes.  So very pleased for you.  Wait till Ro reads this.  OMG, words fail me.

Wonderful news!

Helen,

I am very happy to hear how well you are doing and may the mass continue to shrink, and shrink and shrink!  I have been following your progress and know how much you've had to endure during the past year.  What a nice bit of news to start my work week by (Yesterday was a holiday here in the States).  Please keep us informed.

Warm Wishes,

Cathy  

Ro10

Helen what great news

I am so happy you got some shrinkage from your cyberknife treatments.  Hopefully it will continue to shrink.   Hopefully the pain is still gone,too.  Glad to hear you are doing the Happy Dance, I am doing one with you, too.  Hope you are feeling good.  In peace and caring.

HellieC

Ro10 said:

Helen what great news

I am so happy you got some shrinkage from your cyberknife treatments.  Hopefully it will continue to shrink.   Hopefully the pain is still gone,too.  Glad to hear you are doing the Happy Dance, I am doing one with you, too.  Hope you are feeling good.  In peace and caring.

Thanks everyone

Thanks everyone.  It's amazing how grateful we all become for small changes for the better, isn't it?  When I started this journey (in 2007), I was looking for black and white answers, for a cure, nothing less.  Now, a small amount of shrinkage in the tumour causes great joy.  I guess this is the "new normal"!. 

I am waiting for a date for a MAG3 renal scan (some sort of radioactive tracer is injected and then followed on it's path through the kidneys).  Has anyone had one?  It's come about because I asked my oncologist if there was anything we could check to see if I have any long term kidney damage from the tumour pressing on the ureter (and my refusal to have a stent!). She said blood tests wouldn't help, because the good kidney will be taking up any slack.  But suggested this scan.  I'm not worried about having it, but just wondered if anyone else had had the same?  I'm beginning to wish I hadn't bothered asking, because now I am scheduled to have it, no holiday insurance company will cover me until we get the results!  Grrrh!

Ro - I am so sorry to read in your post on the other thread that you are still struggling with the cough, but I hope the steroids might help reduce any inflammation.  It seems to be one step forward, two steps back sometimes, doesn't it?  We have the treatment, which gives us a good result, but then endure the side effects, which in turn have to be treated.  But I hope you have managed to enjoy your family visitors and that it hasn't been too much work for you.

Kindest wishes
Helen 

Kaleena

HellieC said:

Thanks everyone

Thanks everyone.  It's amazing how grateful we all become for small changes for the better, isn't it?  When I started this journey (in 2007), I was looking for black and white answers, for a cure, nothing less.  Now, a small amount of shrinkage in the tumour causes great joy.  I guess this is the "new normal"!. 

I am waiting for a date for a MAG3 renal scan (some sort of radioactive tracer is injected and then followed on it's path through the kidneys).  Has anyone had one?  It's come about because I asked my oncologist if there was anything we could check to see if I have any long term kidney damage from the tumour pressing on the ureter (and my refusal to have a stent!). She said blood tests wouldn't help, because the good kidney will be taking up any slack.  But suggested this scan.  I'm not worried about having it, but just wondered if anyone else had had the same?  I'm beginning to wish I hadn't bothered asking, because now I am scheduled to have it, no holiday insurance company will cover me until we get the results!  Grrrh!

Ro - I am so sorry to read in your post on the other thread that you are still struggling with the cough, but I hope the steroids might help reduce any inflammation.  It seems to be one step forward, two steps back sometimes, doesn't it?  We have the treatment, which gives us a good result, but then endure the side effects, which in turn have to be treated.  But I hope you have managed to enjoy your family visitors and that it hasn't been too much work for you.

Kindest wishes
Helen 

Hi Helen
glad to hear about

Hi Helen

glad to hear about the shrinkage!    You are so right about the little joys!    I am happy that things are working for you.    Let me know also how that test goes as you know I have a kidney stent.   I too have a tumor or soft tissue mass but my ureter passes through it.   However my urologist found out that the blockage was more bear the bladder and she felt was caused by the brachytherapy- a long term effect of radiation.

sorry I havent replied earlier   

My best to you

Kathy

 

HellieC

Kaleena said:

Hi Helen
glad to hear about

Hi Helen

glad to hear about the shrinkage!    You are so right about the little joys!    I am happy that things are working for you.    Let me know also how that test goes as you know I have a kidney stent.   I too have a tumor or soft tissue mass but my ureter passes through it.   However my urologist found out that the blockage was more bear the bladder and she felt was caused by the brachytherapy- a long term effect of radiation.

sorry I havent replied earlier   

My best to you

Kathy

 

Hi Kathy

Hi Kathy

Will definitely post once I've had the scan, to tell you all about it.  I have chickened out of having a stent as the only people I know who've had them have had trouble with them!  I don't need any more trouble - haha!  I do, however, know one or two people who have only had one working kidney, through illness or accident, who have been fine.  My ureter shows as dilated near to the tumour on the MRI scan, so hopefully the MAG3 scan will give us some more information about whether there is still pressure there or whether the tumour shrinkage has freed things up and the dilation is just a permanent but relatively harmless reminder of when it was being pressed on by the tumour. We shall see!

Kindest wishes
Helen x

Kaleena

HellieC said:

Hi Kathy

Hi Kathy

Will definitely post once I've had the scan, to tell you all about it.  I have chickened out of having a stent as the only people I know who've had them have had trouble with them!  I don't need any more trouble - haha!  I do, however, know one or two people who have only had one working kidney, through illness or accident, who have been fine.  My ureter shows as dilated near to the tumour on the MRI scan, so hopefully the MAG3 scan will give us some more information about whether there is still pressure there or whether the tumour shrinkage has freed things up and the dilation is just a permanent but relatively harmless reminder of when it was being pressed on by the tumour. We shall see!

Kindest wishes
Helen x

Also, I will let you know how

Also, I will let you know how my stent replacement goes on Wednesday.   It will be my second replacement surgery.

Hugs!!

Kathy

Ro10

HellieC said:

Thanks everyone

Thanks everyone.  It's amazing how grateful we all become for small changes for the better, isn't it?  When I started this journey (in 2007), I was looking for black and white answers, for a cure, nothing less.  Now, a small amount of shrinkage in the tumour causes great joy.  I guess this is the "new normal"!. 

I am waiting for a date for a MAG3 renal scan (some sort of radioactive tracer is injected and then followed on it's path through the kidneys).  Has anyone had one?  It's come about because I asked my oncologist if there was anything we could check to see if I have any long term kidney damage from the tumour pressing on the ureter (and my refusal to have a stent!). She said blood tests wouldn't help, because the good kidney will be taking up any slack.  But suggested this scan.  I'm not worried about having it, but just wondered if anyone else had had the same?  I'm beginning to wish I hadn't bothered asking, because now I am scheduled to have it, no holiday insurance company will cover me until we get the results!  Grrrh!

Ro - I am so sorry to read in your post on the other thread that you are still struggling with the cough, but I hope the steroids might help reduce any inflammation.  It seems to be one step forward, two steps back sometimes, doesn't it?  We have the treatment, which gives us a good result, but then endure the side effects, which in turn have to be treated.  But I hope you have managed to enjoy your family visitors and that it hasn't been too much work for you.

Kindest wishes
Helen 

Helen

I have not heard of the MAG3 renal scan.  I looked up what the Internet has on it.  Most of what I read was for infants or children having the test.  I hope it gives you the answer you want.   are you planning a trip, since you talked about holiday insurance?

my cough is much better.  I just hope it stays away when the steroids are finished.  I have enjoyed the company.  It is definitely not too much.work.  We will have a month before the next guests arrive.  Two very special friends are coming.

hope you continue to have shrinkage from your tumor.  It will be cause for more celebration.  In peace and caring.

Ro10

HellieC said:

Thanks everyone

Thanks everyone.  It's amazing how grateful we all become for small changes for the better, isn't it?  When I started this journey (in 2007), I was looking for black and white answers, for a cure, nothing less.  Now, a small amount of shrinkage in the tumour causes great joy.  I guess this is the "new normal"!. 

I am waiting for a date for a MAG3 renal scan (some sort of radioactive tracer is injected and then followed on it's path through the kidneys).  Has anyone had one?  It's come about because I asked my oncologist if there was anything we could check to see if I have any long term kidney damage from the tumour pressing on the ureter (and my refusal to have a stent!). She said blood tests wouldn't help, because the good kidney will be taking up any slack.  But suggested this scan.  I'm not worried about having it, but just wondered if anyone else had had the same?  I'm beginning to wish I hadn't bothered asking, because now I am scheduled to have it, no holiday insurance company will cover me until we get the results!  Grrrh!

Ro - I am so sorry to read in your post on the other thread that you are still struggling with the cough, but I hope the steroids might help reduce any inflammation.  It seems to be one step forward, two steps back sometimes, doesn't it?  We have the treatment, which gives us a good result, but then endure the side effects, which in turn have to be treated.  But I hope you have managed to enjoy your family visitors and that it hasn't been too much work for you.

Kindest wishes
Helen 

Helen

Thinking of you.  whoops, duplicate post.

Ro10

Kaleena said:

Also, I will let you know how

Also, I will let you know how my stent replacement goes on Wednesday.   It will be my second replacement surgery.

Hugs!!

Kathy

Kathy

hope your replacement stent is uneventful for you.  Wishing you well.

Kaleena

Ro10 said:

Kathy

hope your replacement stent is uneventful for you.  Wishing you well.

Thanks Ro.
Then at the end of

Thanks Ro.

Then at the end of February, I will go for another PET scan.  I have to wait several weeks after the stent surgery before I can get one so that the test will be more accurate.  

 

HellieC

Ro10 said:

Helen

I have not heard of the MAG3 renal scan.  I looked up what the Internet has on it.  Most of what I read was for infants or children having the test.  I hope it gives you the answer you want.   are you planning a trip, since you talked about holiday insurance?

my cough is much better.  I just hope it stays away when the steroids are finished.  I have enjoyed the company.  It is definitely not too much.work.  We will have a month before the next guests arrive.  Two very special friends are coming.

hope you continue to have shrinkage from your tumor.  It will be cause for more celebration.  In peace and caring.

Kathy and Ro

Hi Kathy.  I didn't realise you were onto your second stent replacement - wow - where does the time go?  I would be really interested to hear how you've got on with them and whether it feels the same each time it is replaced.  I've read some reports that they can cause pain in the kidney or bladder but when people have had them changed it has gone away, which makes me think that accurate placement is key to the whole thing. I hope the next procedure to replace it goes without problem.

Hi Ro - yes - my research on the MAG3 scan seems to throw up a lot of information for infants and children too! We had hoped to fit in a holiday abroad while the tumour was behaving itself, so I think I have shot myself in the foot by asking about this scan!  If I had not mentioned it, my oncologist wouldn't have done anything and I could have got insurance!  We weren't sure where we might go, but were looking at various things, including a  trip to New York (I love it there!) followed by a cruise along the east coast up to Maine etc and ending in Montreal.  But also things closer to home, Portugal or Cyprus. But now it will have to wait until this scan is done.  So we have booked ourselves a short trip in the UK to Dorset, in March.  It's a lovely county in the south west of England with beautiful rolling countryside and a nice coastline.  My husband has family there and my brother has a holiday home, so we will be catching up with people while we're there. 

So pleased that your cough is improving with the steroids.  And I hope that it continues to be better when you stop the steroids.  My best friend's mother was on steroids for quite a long time.  She was very elderly and didn't hear very well and used to call them "stereos", so that's what they are called now in our house!

Warmest wishes to you both
Helen xx