News about our Djinnie

Suekub said:

Still here!

I know it's been a while since I posted. I have been going through my own issues and to be honest I didn't feel up to contibuting anything. I have several new things happening - new brain and bone mets. Latest brain MRI showed no growth in the one lesion in 2 months which is good and radiation oncologist is not in a hurry to radiate but he will be meeting with his team on Monday to discuss. He wonders whether Sutent may be having an effect although is fully aware of the blood/brain barrier. I have been on Sutent since early January and have had few side effects for which I am thankful. I haven't reached full dosage of 50mg, presently 37.5mg 2 weeks on, 1 off. I feel that this drug might actually be doing something postive. The one tumour that is obvious has has had a significant reduction in size. I will also be seeing medical oncologist on Monday for review. I assume it is almost time for a CT. Happily, I still feel pretty well and outwardly show no signs of the dreaded disease

i have been reading posts and note you and several others are due for CTs soon. Good wishes to all.

Sue

 

Sue, I don't know you very well, nor you know me, but wanted to extend my empathy for your recent struggles. What a battle! Just wanted you to know I care and hope you receive continued improvements ..reaching wellness. Glad you have few to no side effects too..whew~

I can imagine if she could, DJinnie would reach out to YOU with her care and support~

Be well,

Warmly, Jan

I had been keeping up with her also but Ihave not heard anything for a few days and was wondering about her.  Bless her heart, hope they can control her pain.  Sure do love her.

Thank you for letting us know about Djinnie. I am still checking in on everyone. May the angels surround her and take away her pain. SUZ

Suekub said:

Still here!

I know it's been a while since I posted. I have been going through my own issues and to be honest I didn't feel up to contibuting anything. I have several new things happening - new brain and bone mets. Latest brain MRI showed no growth in the one lesion in 2 months which is good and radiation oncologist is not in a hurry to radiate but he will be meeting with his team on Monday to discuss. He wonders whether Sutent may be having an effect although is fully aware of the blood/brain barrier. I have been on Sutent since early January and have had few side effects for which I am thankful. I haven't reached full dosage of 50mg, presently 37.5mg 2 weeks on, 1 off. I feel that this drug might actually be doing something postive. The one tumour that is obvious has has had a significant reduction in size. I will also be seeing medical oncologist on Monday for review. I assume it is almost time for a CT. Happily, I still feel pretty well and outwardly show no signs of the dreaded disease

i have been reading posts and note you and several others are due for CTs soon. Good wishes to all.

Sue

 

What are we going to do today Brain?  Same thing we do everyday Sutent!  Take over the world!

Sorry about that.  I seem to have developed a dark side to my humor.

One of my issues with RCC was a tumor on my pituitary gland.  After radiation and the appropriate waiting period.  The original tumor was declared gone. 

However there was just a glimmer on the pituitary stalk itself.  And that was declared not important.  I went on Sutent shortly after that.

Remained on sutent for three and a half years.  The glimmer remained so the whole time. 

Except for the side effects I loved Sutent for the controll it had over the RCC in other places.  However I was moved to votrient.

Along with a new Doctor closer to home.  Long story. I was without treatment for nine months.  I needed the rest to be frank.  Most everybody was on their best behavior. 

Then the glimmer went from just that to 3.5 cm. 

So yes.  Sutent can and does get by the blood brain barrier.   I used to have a printed copy of an ASCO abstract that studied that in a positive way.

Wandered off somewhere.  I will probaby find it next to my youth and good looks. 

I hope I have helped in some way.

BellaBinksMom said:

Prayers for Djinnie

I have been so busy and unable to post, however, I do read the board daily.  My prayers go out to Djinnie and my hope for her is resolution for pain and peace.  Thank you for always updating us, Jojo.

 

Debbie

Debbie, Jojo has a new thread updating us with good news. Read that especially her post from the 24th in that thread.

http://csn.cancer.org/node/293854