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pony
Member since Apr-9-08
7 posts
Sep-13-08, 12:24 PM (PST)
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"RE: Great Kidney Cancer Result"
 
   Hello to Everybody,

Just want to add some background for your reference.

My husband's story starts from 2005, he was a very healthy person, born in 1949, non-smoker, never drink, works very hard all his life time, retired in 2002.No body in his family (we are chinese) had cancer history before. He became type II diabetic in 1990, since then he never eat sweets and take oral drugs and do some exercise, so he can control the blood sugar pretty well.

In 2005, after a regular blood test in a clinic (for diabetic), the doctor found his Haemoglobin is a little bit lower than average, it was 12.2, average is above 13. But the Doctor just say the reason may be his age, he was 56.

In 2006, we did blood test as usual, the Haemoglobin count goes up and down (mostly down) tiny the whole year, and his outlook and weight was as usual.

Then comes 2007, we went for a trip in summer time, after we came back,the Haemoglobin suddenly drop to 11.4. By that time we started to worry, did more blood test, urine and feces test. Nothing was found.

Then we went to put a mini-camera in the stomach and colon, nothing was found.

After then, we took the advice of the doctor to do a needle test of the bone marrow. (My husband said it was grade 10 painful) Nothing was found.

The doctor said everything was fine, nothing more needs to do, somebody at your age just have anemia for no reason, and you feel nothing before it drops to 8. We didn't think it sounds ok, so we asked for a pet scran. (Our pet scan idea comes from my mother,she is a stage III breast cancer survior, she have done a Pet scan before. At that time we didn't even think about cancer, just to do the last thing we could do) How foolish we were!

The doctor said Pet scan is very sensitive,it will scare you, but if you insist to do, you can do it by privite payment.

WOW How scary we were!!!! KIDNEY CANCER STAGE IV , 8cm tumor with multipule mets to both lungs.

As Debbie said(http://www.myhusbandskidneycancer.com/),it was a Tsunami to our family.

We do not want to blame any one here in this site. To write down the whole story, we just want people think about our experience, and never miss the golden chance of cure.

One person only have one body and one life, do not put it in other's hand, do not trust one doctor, do not trust two doctors, do not trust three doctors, (we have seen more than 5 doctors before diagnosis), research for knowledge, go internet.

It was not a smooth road to a diagnosis, but even more tough on the road to seek for medical care. (sorry have to stop here, to be con't)

Pony


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JudyDowell
Member since Apr-6-08
56 posts
Sep-13-08, 02:58 PM (PST)
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1. "RE: Great Kidney Cancer Result"
In response to message #0
 
   You say reference, to what? You say background info, for who, your husband, but you don't tell us why. I'd love to know, is he taking DCA? Why have you posted this, to tell us we need more than just a second opinion (as if I didn't know better). Pardon me for asking, but why post a link to Debbie's page on here? I and probably everyone on here watched the stand up 2 cancer program, so if you wanted us to find a link for that, well, you could say, go to Debbie's site for that, but you've sort of left us hanging here. I couldn't find any other post by you to find out, even tho you spoke of your husband in the past tense, did he survive? Is he in treatment? I just seem to have a problem understanding your post or what you are trying to convey. Please clarify. Thank you,
Judy

Judy


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JudyDowell
Member since Apr-6-08
56 posts
Sep-13-08, 04:29 PM (PST)
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4. "RE: Great Kidney Cancer Result"
In response to message #3
 
   Oh, I searched for PONY and couldn't find anything, you had me so lost. I've been up all night with my sister, she is in Houston Tx. in lockdown at the hospital where she works, I had to keep updating them as to where the hurricane was going and how things were going, so I am really tired. Maybe that's how I missed it. (grin) I will check the home page now, then I will take a much needed and overdue nap.
Judy

Judy


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pony
Member since Apr-9-08
7 posts
Sep-13-08, 05:33 PM (PST)
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5. "RE: Great Kidney Cancer Result"
In response to message #0
 
   After diagnosis, they take out the kidney with tumor and told us a drug nameNexavar, but we have to buy by ourself, it is very expensive about US5000 per month. We have no choice.

The first 6 moonths we were in deeply sadness and fearness, we cried ,sleepness nights, anger and even thinking we are wrong diagnosis.

Kidney cancer is not reponse to chemo or radation, so we can only rely on Nexavar. But disease progression after 6 months of Nexavar,
new mets, so we did a research there is another drug Sutent, it is the same price as Nexavar.

We went to another hospital for a second opinion, the doctor told us if Nexavar fell, other drug will not help so much, it it not worth trying (I think he consider the price). He just send us back home.
No drugs no treatment means waiting to die.

That was the time we found Cyberknife. We never heard about it before. We then went to another hospital, another doctor, for another second opinion. This time more horrible, the doctor said no need to waste money on cyberknife, ask my husband to perpare (you know what i mean), cyberknife will make lots of holes in my husband's lungs, he will need machine to breath. (He is still breathing normal as before)

DCA is also found by searching internet, my husband said he has nothing to lose.

There are 14 nodules in lungs, 7 have cyberknife treatment, one suv 2, one suv 3.4 (post-treatment pneumonitis), one is suv1.5 and 1.6, three nodules resolved. The rest are all under suv 1.1

We will have another Pet scan after 3 months, hope for remission, I will up-date here.

Thanks for reading.

Pony


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JudyDowell
Member since Apr-6-08
56 posts
Sep-13-08, 07:42 PM (PST)
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6. "RE: Great Kidney Cancer Result"
In response to message #5
 
   Wow, you have really been through it. My prayers are with you. I have been feeling much better since I started taking the DCA, I hope the best for your husband. Sounds like you are on the right track!
God Bless,
Judy

Judy


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