Recurrent GBMTumor- any experience w/ Avastin and CPT 11

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Heather Q
Heather Q Member Posts: 3
edited March 2014 in Brain Cancer #1
Hello. My mom was diagnosed w/ a GBM and had surgery in October of 09. They were able to remove the whole tumor. She did the 6 weeks of radiation w/ 125 mg of Temodar and is currently finishing her 5th round of Temodar 250 mg, 5 day per month, 23 days off. She's been taking decadron off and on since the surgery, but more on than off. Her tumor was in her left frontal lobe, and this has made it difficult for her to communicate because she can't retrieve the words. These symptoms are directly related to brain swelling. Unfortunately, frontal lobe difficulties include far more than just speech. Its difficult for her to focus, concentrate, plan, sequence, prioritize and organize. Some times she seems like herself and others not so much, yet she's still in there. Her symptoms worsened and they did not respond to increasing the decadron and I was terrified the tumor grew back and I was right. Its very small and in the same place. They want to treat it w/ cyberknife, to shrink it and w/ Avastin and CPT-11. I'm wondering if anyone could share their experiences w/ Avasitn and CPT-11. My mom is 67 and her dream has always been to go to Italy. My sister and I are suppose to be taking her in July and we are praying she'll be up to going and be alert and aware enough to enjoy it. We were told that the cyberknife and the new chemo, if it works, will shrink the tumor and eventually decrease the swelling and that we should see some improvement again. Any experiences w/ these drugs would be appreciated. The list of possible side effects, as always, is frightening. Thank you so much :)

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  • OCMenno
    OCMenno Member Posts: 26
    #2
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    My wife is also expected to
    My wife is also expected to start Avastin shortly. Just waiting to see if my benefits will cover the cost. Like you, I am also very interested in Avastin results. Have found some posititve stories and some negative. I see that almost everyone using Avastin combine it with CPT-11. CPT-11 was never mentioned by her Oncologist. Instead she will be using Lomustine, which she has already started on its own, along with Avastin. So far I haven't heard of anyone using Avastin with Lomustine. Our next visit to the Cancer Centre we will have to ask about CPT-11.
  • MrsPlate
    MrsPlate Member Posts: 19
    #3
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    We start Monday
    My husband starts his first treatment on Monday of Avastin and CPT-11. The side effects are VERY scarry, especially the bleeding one, since he's on blood thinners from a pulmonary embolism he had recently (side effect of the decrease in movement from the tumor he's got on his spine- none in his brain yet- and the blood clots he's got in his leg). It seems to be one complication ontop of another...
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #4
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    hope this helps, one needs to weigh benefit vs risks of therapy
    While i dont have personal exp with Avastin or CPT-11, I read this review on Avastin and CPT-11, "What's New Avastin and CPT-11 in the Treatment of Malignant Glioma

    Dr. Virginia Stark-Vance, MD

    http://www.dfw-neuronetwork.com/Avastin_and_CPT-11.htm

    Excerpt from DR aritcle below from 2005

    The obvious question is how to improve on what seems to be a very effective – but still toxic – therapy. It would be important to identify which patients may be at risk for cerebral hemorrhage or gastrointestinal perforation with Avastin. It would also be preferable to use other drugs with less toxicity than CPT-11 or at least develop other ways to treat its toxicities. Currently my patients receive an instruction sheet for dealing with diarrhea, and this seems to be helpful to those beginning CPT-11 for the first time.

    Recently, I summarized the results of the first patients treated with Avastin and CPT-11 and presented them at the World Federation of Neuro-oncology in Edinburgh. Even though the regimen is far from perfect, it seems to work well in the majority of patients with relapsed malignant glioma. However, I would still encourage all patients to try Temodar and the less toxic regimens first.

    Also, I would warn patients to check carefully to see whether Avastin and CPT-11 are covered under their insurance plan. While most of my patients have been able to receive Avastin and CPT-11 under their private insurance plans, Medicare and Medicaid patients aren’t so fortunate. However, there are programs available from the pharmaceutical companies to help with the cost of the drugs. I understand that Genentech is providing Avastin for the Duke clinical trial, and would certainly encourage anyone who could to enroll in that trial.

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