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8-16-2008

Update: After the last two scans over the past 4 months indicating that the largest of the tumors was growing,  we had good news today. There was no change in the tumor on yesterday's scan so it is again rated as 'stable' and I will continue on the present chemo.

5-7-2008

Well, here it is...

I had my appointment with the oncologist yesterday regarding my
latest ct scan. There has been some growth in the largest tumor, the one they watch for the study I am on. The smaller tumors remain unchanged. The growth is very slow and it is unknown if my immune system or the chemo is controlling them. It was necessary for us to make a decision as to whether they go in and burn (microwave) the large tumor or I stay on the chem. If they burn the tumor I will no longer qualify for the study/chemo. It was decided the best thing for me at this time is to stay on the chemo.

Thanks for all your support!

3-4-2008

The current drug I'm on is a trial drug.  I am on it through a study. I was in the arm of the study that took a massive dose once a week. It was quite difficult physically, taking about 3 days a week from me.  I became the only one in the study willing to tolerate that regimen, so they closed that arm of the study and I'm now on a daily dose which is much easier on my body, not to mention my attitude <G>. 

The last scan showed the largest tumor was "pudgier". However when it was measured, the numbers were the same within a margin of error. (they measure the width and length not the depth). This allowed me to stay on the drug as they considered me still "stable."  Another lump has been discovered and even though they can see it and feel it, they can not image it on either ultra sound or ct so it's on a 'wait and see'. I guess I've been the water cooler talk of the radiology set these days. Leave it to me to frustrate every radiologist in town.

Dogs have come in steady and in great numbers this winter, we can now change the tote board to read 700.

I want to thank Everyone for All of your support, without you this
would be a battle I would find even more difficult to fight.
Sometimes the bank forwards on who the donations are from, sometimes not, so if you have not received a personal thank you, Thank You!!

12/12/07

Med report yesterday was mixed. Radiologist said one of the smaller 
and the larger tumor in the left lung had grown. So the nurse had 
another oncologist at the clinic read it. He's also got a patient or 
two involved in the study and is, along with my Dr. Tezcan rated  in 
the top 100 oncologists in the USA. He said no, the small one had not
grown and the larger one had if anything a minute reduction. He did 
measure it, the radiologist had not, and the numbers were more 
accurate. I'm waiting to hear it from Dr. Tezcan, him I trust.

It was enough anyway that I will stay on the drug and in the study 
for another 3 months. (until my next scans). Seems we are reviewed at 
the 3 month mark as to whether they wish us to continue on the drug. 
My labs were excellent. I'd had some rise in the creatinine  (kidney) 
levels lately that were not good. We got them back down to the normal 
range. Whew. 

I also had a 'floater doctor' yesterday from Colorado (Dr. Tezcan is 
gone until Jan.) who fills in on occasion. I'd never met her. She has
a private practice that is involved in rehab from chemo and helping 
patients get thru chemo focusing on physical maintenance. When you 
take chemo it in itself will take up to 50% of your muscle mass so it
is important to try to maintain that mass. It was a concern for me as
with winter here I'm not out with the dogs and getting the physical 
exercise. I was also concerned about how to care for my damaged feet.
She gave me lots of great information about both. Plus she is a dog 
person. :)

9/18/07

I had scans and labs last week, saw the oncologist yesterday. The
largest of the tumors which they watch as the primary appeared a bit fatter and longer however the measurements were very close to the same as 3 months ago. Sometimes it's the cut of the ct that makes the difference. So I am going to remain on this drug at this time. There has been one patient in the study who was Dr. Tezcan's patient that had to drop out but he didn't indicate why. There was a bit of a rise in the creatinin level which a little concern so it will be closely watched. It has to do with the kidney.

He also said the people taking it just once a week, 900 mg., seem to
have more difficulty with loss of strength and energy so that part is
'normal' for the drug I guess. Sure don't care for it tho.

So other than getting beaten up pretty bad for a couple days while
taking it I'm hanging in.

Thanks everyone for your support, it means So much to me.

Mary Ann

6/15/07

Mary Ann sent the following update :

“I jumped thru the hoops this week doing scans, x-rays and blood work. Saw the doctors yesterday. The upside is the cancer is still "stable" (hasn't grown or moved that they are aware of). The downside is that the drug is causing too much damage to my body that may become permanent. Therefore they are taking me off the current drug. I will be starting a newer drug as soon as, and if, they can get me approved to take it. They are hoping it will cause shrinkage or stability without the damaging side effects. It too has it's menu of lovely side effects but they will be watching closely and pull me off it if it starts to damage my kidney.”

Mary Ann was approved for the new drug the next day.  It is called Parafosine, and it is still in clinical trial.  It is showing enough promise that 350 people will be allowed to take it outside of the trial, and Mary Ann is one of them.  She expects to start it this coming week.

What we don’t know is what this drug will cost.  Since it is outside of a trial, Mary Ann expects to have to pay for it.  However, also because it is not part of a trial, Medicare will not pay for any of it.  We will post another update when we find out.

3-25-07:  Mary Ann has had another scan, which showed that the Sutent is preventing any more tumor growth.  Of course, Mary Ann had hoped for a repeat of her first scan which produced a reduction in the tumor, but she is happy that this drug is doing its job.

12-26-06:  Mary Ann's latest scan showed no progression of the tumor.  However, the Nexavar has too many side effects, so her doctor switched her to Sutent, another brand new, cutting edge drug which is unfortunately even MORE expensive than the Nexavar.  

10-16-06:   GREAT NEWS: Mary Ann has been on Nexavar for two months now.  She was cut back to half the recommended dose because of the high level of side effects.  She has now had her first repeat CT Scan which showed a 30% reduction in the size of the largest tumor!  This is unexpected good news, as this drug is
considered a maintenance drug only.  Her oncologist says she could stay on it indefinitely.

Friends of Mary Ann will soon be using Ebay auctions to help with her medical expenses. When the Ebay auctions begin, the items will be listed on THIS PAGE.  Please check the page frequently to see the latest auctions.