How do lifestyle factors and exposure to environmental substances affect our cancer risk?
by ober100 on Sat Jun 09, 2012 09:21 PM
I go for the scan on June 25th & 26th. Fingers crossed that it is positive. Tell me why do they think yours turned out negative? Further, what do they plan for you now?
We have to get through this I will pray for you!
by AletheaD on Sun Jun 10, 2012 01:40 PM
My sister was diagnosed with this cancer a year ago. They said it was inoperable due to the artieries wrapped around it and gave her 2 months. Finally, a great surgeon decided he would do the surgery but gave her little chance of surviving it. Long story short, the whipple was performed succesfully in July 2011.
Other than most of the pain, problems eating and weight loss, we thought she was on her way to recovery.
The doctors wanted her to do chemo immediately after, due to finding some residual in her lymph nodes but my sister was more of afraid of chemo than the cancer.
I found an experimental treatment being done by an Oncologist who cured himself of deadly melanoma and started a group called neoplas.org .
My sister was injecting herself at home with a large dose of Interferon and taking a huge amount of lovastatin every other day. Her side affects were like a severe case of the flue but she kept her hair and no naseau. It's premise is to boost your own immune system to fight the cancers return.
After several clean CT Scans, she elected to discontinue the treatments against her doctors advice.
She was feeling better each day until about 2 weeks ago when the pain resurfaced and she lost her appettite completely. Then she could hold nothing down, with every meal and even water coming back up soon after injesting. She became severely dehydrated and was readmitted to the hospital.
The ER diagnosed it as "Colitis" gave her antibiotics and sent her home. It worsened and then her stomach swelled up like she was 4 months pregnant.
Back into the hospital she went with more tests. That was over a week ago and the ER doctor said her cancer had returned and was spreading very fast to the intestines and colon. She started to say her good-byes to family.
The surgeon who performed the first whipple said "Hold Up!" He's not willing to say the cancer has returned full blown and in fact says her symptoms have him baffled. Whatever it is, he says is rare but can't say much more until test on the fluids comes back.
Now, she was sent home again for the weekend since she can keep half of her foods down but she has told me her ankles, feet and back are now swollen too. She has gained 7 pounds in fluid over the past 5 days or so. Her fever spikes but is able to urinate some, it having stopped all together when in the hospital.
Has anyone else had these symptoms or how did you know when the cancer returned? I always thought it would spread to the liver or lungs but not first to the intestines and colon.
I'm just looking for some hope that it's something she can recover from.
by ranabel on Sun Jun 10, 2012 09:00 PM
What did you take for this?
by PeterGood on Mon Jun 11, 2012 05:23 PM
Ober100, thanks for your reply and great to learn that you have positive octreoscan! The scan primarily tests the receptors for somatostatin and a positive result indicates that your cancer cells will be responsive to several well-studied and effective treatments such as the targetted therapy or those initiated in Netherlands. My case is even rarer and more complicated not only because of the negative octreoscan but also my multiple types of tumors (lymph nodes). I went 9 chemos with 3 drugs so far and part of my tumors are responsive but the other are not. I can see that my doctor feels a little headache since this is really uncommon.
by margahouse on Tue Jun 12, 2012 05:14 PM
by ober100 on Tue Jun 12, 2012 05:42 PM
I'll Keep you posted, you do the same, good luck with your scan!
by ober100 on Wed Jul 18, 2012 10:22 PM
My scan turned out positive for receptors, my doctor sent all info to Erasmus MC in Rotterdam weeks ago. Still waiting for a reply! Have you heard anything yet?
by Bobsgirl on Fri Aug 03, 2012 04:08 AM
Your story is very similar to my husband's. He was diagnosed in April of this year w/ Adenocarcinoma of Pancreas w/ mets to liver and has been on a chemo break. We went to Mayo clinic last week and found out he actually has Neuroendocrine pancreatic cancer instead of Adenocarcinoma. I am now trying to learn all I can about Neuroendocrine PC and treatment options. He did have some decrease in size of tumor in Pancreas and a little decrease in size in tumors in liver. Not sure what's next. Looking for anyone with this particular cancer who can tell me what they are being treated with. Don't think he is a surgical candidate. Thanks so much.
by PeterGood on Fri Aug 03, 2012 06:43 PM
Hi, what grade is your husband's PNET? What drugs is your husband using now in chemo? Generally the treatment will depend on the grade and stage of the tumors. This is rear cancer. Always suggest one to see specialists of this area. I am on chemo too with grade 3/stage 3 of PNET. Now I'm on Xeloda + Temodar and it seems effective. Tried Carboplatin + Etoposide, and Texol before.
God bless you and your husband!
by ober100 on Fri Aug 03, 2012 07:03 PM
I will be in Rotterdam on the 20th of August! Wish me luck. How are you doing?
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