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PostPosted: Fri Mar 21, 2008 9:01 pm 
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Joined: Fri Sep 01, 2006 7:22 pm
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Location: Montpelier, VA
I haven't posted here in quite a while but thought I would share my mom's experience with amrubicin. (you can read in my profile below a description of her history).
Mom had a great response to carboplatin and etoposide the first round and was declared NED after 6 rounds. 8 weeks later with a PET, it was shown to have metastacized to liver. She enrolled in the trial involving amrubicin and you can only enroll in this trial if you have only had one prior chemo regimen. Much less nausea and diarrhea with amrubicin and she didn't require nearly as many platelets and only one transfusion as she did with the platin therapy. With the exception of the week after chemo, she was able to pretty much live a normal life. The amrubicin eradicated all the very small liver lesions and greatly reduced in size the three larger ones.
She caught a cold after her 6th treatment and was hospitalized with pneumonia. The dr kept saying, let's just wait and get you better....a few weeks won't matter. So, she waited. She waited 6 weeks and called about setting up her appt for amrubicin the following week. She was informed by the research nurse that she could no longer participate because she had gone past 6 weeks. If she had known that, she would have definitely gone in at 5 weeks. Very maddening. Her dr claimed he did not know there was a limit but who is to blame. There was nothing in the research study info that indicated a max amount of time. Very disappointing since there is no way to purchase the drug at all. And, of course this drug was showing a tremendous response.
Anyway, she was put on Topotecan and after two rounds it is growing again. So we are off to our next clinical trial involving Taxol and CBT-1. I will keep you posted on that.
The main point of this post is to encourage people to look into this clinical trial using amrubicin. It was far less toxic to the system than the platin drugs or topotecan. And it was working for her.

Laura

_________________
My mom (65) diagnosed w/ limited stage sclc in 7-06. Confined to one small spot on lung and hilar lymph nodes. 1st chemo (cisplatin and eptoside) 8-1-06.
Hospitalized due to severe dehydration. Discharged 2 days later. Readmitted 4 days later due to leg pain, blueness of leg/foot and shrunken foot. Diagnosed with arterial leg clot. Remained in hospital for 3 weeks because could not do surgery due to low blood count and low clotting. Surgery was initially successful and regained pulse back in all areas of foot. Celebrated birthday on Aug 29. That night, she lost pulse on side of foot and had excruciating pain. Still has pulse on top of foot but will live with chronic pain. Discharged from hospital 4 days after clot surgery.
Began 2nd round of chemo. Admitted to hospital on third day of chemo due to leg weakness and loss of bladder control and concern that a tumor may be sitting on spine. All tests normal but very dehydrated, weak and nauseous. Remained in hospital for 2 weeks. Began radiation while in hospital. Released from hospital and was home for one week before beginning third round of chemo. Drs changed her to carboplatin due to the previous severe side effects probably linked to cisplatin (hearing loss, severe nausea, electrolyte imbalances, etc.)
9-26-06 CT scan revealed excellent response to chemo....yippee! No evidence of disease in lung or lymph nodes. Continue radiation and have one more round of chemo.
10-3-06; Severe nausea and vomiting. Prescribed Marinol since no other anti-nausea meds seem to work. Has 12 more days of radiation.
1-7-07; Declared cured…excited but apprehensive
2-27-07: PET scan revealed metastasis to liver. Knew we shouldn’t have gotten too excited. Three lesions of 1.5-3cm and numerous small lesions too numerous to count.
3-20-07 Began clinical trial of amrubicin. Tolerated much better than platins. Nausea and diaarhea but only one trip to hospital after 6 different treatments. Three CT scans showed shrinkage or eradication. Got a cold and got pneumonia. Was dropped from the trial because missed too many weeks of the treatment (missed 6 weeks of being involved in the study). If we had been told she would be dropped, you can be sure she would have gotten up out of the hospital bed and demanded the amrubicin. Very difficult time.
1-08 Began topotecan. Sick, sick, sick. Did two rounds and lesions grew.
3-17-08. Talked with NIH about clinical trial involving CBT-1 and taxol. Intake appt is scheduled for 4-2. Wish us luck!!!


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PostPosted: Sat Mar 22, 2008 6:36 am 
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Joined: Thu Mar 16, 2006 6:04 pm
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Location: Long Island NY
Hi, Laura-

Thank you for the info on amrubicin.It sounds promising. And a Thank You to your Mom for her bravery in helping us all by furthering research which we all need so desperately. I also share your frustration over the trial rules. I would be furious! Hopefully, the new trial will deliver even better results. I hope your Mom continues to fight and prevail.

Best Wishes,

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Kim
Husband of Bev

http://www.lungevity.org/l_community/vi ... hp?t=25389


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PostPosted: Sat Mar 22, 2008 7:50 pm 
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Hi-you may want to talk to the Dr's about getting your Mom approved under the Compassionate Use Mechanism-I was told by Dr's @ Johns Hopkins-even if a trial is closed you could still get in it-I would definitely look into it since your Mom had such a good response from it.
Dar

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My Mom
5/1/46-6/20/08

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight

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