Avastin as first-line treatment?

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Avastin as first-line treatment?

by DavidA on Fri Aug 28, 2009 12:00 AM

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Father recently diagnosed with grade IV glioblastoma in left front temporal lobe. He had surgery three weeks ago and is now on chemo (temodar) plus radiation at mass general. However, he is declining rapidly.

There seems to be a lot of interest in the medical literature about using Avastin as a front-line therapy, in conjunction with the chemo and radiation, as opposed to saving it for use after the cancer has returned following the chemo and radiation.

I'm wondering about whether to insist on getting Avastin now rather than waiting. What experience do others have?

 

 

RE: Avastin as first-line treatment?

by mia66 on Fri Aug 28, 2009 12:00 AM

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There is a protocol which is generally followed for all GBM.  That is surgery, radiation with low dose Temodar and then finally High dose Temodar 5/23. 

You can request that they begin with Avastin; however, the probably is that your father's insurance company will not likely pay for it as a first-line treatment.  It is extremely expensive.

You might have the alternative to get it through a clinical trial.  My husband is currently on Avastin and CPT11 after failing Temodar after his 6th 5/23 treatment with Temodar. 

His NO told him that she could only prescribe him the Avastin and have it paid for by our insurance after a change on his MRI. 

Good luck and take care,

M

RE: Avastin as first-line treatment?

by DavidA on Fri Aug 28, 2009 12:00 AM

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Thanks for that very thoughtful reply. I definitely appreciate the whole question of whether we can get insurance to cover the cost, and I am generally extremely respectful of medical protocol and the need to proceed cautiously with any new drug. I also understand that avastin is definitely NOT a
panacea; it doesn't cure glioblastomas, but it appears to prolong life
and reduce symptoms in some statistically significant fraction of cases. Having said all that, here's why I think we should be exploring Avastin seriously:

1) It's not unusual for
cancer drugs to be approved as "salvage" treatments before being approved
for use as conjunctive or first-line treatments.
2) Avastin
specifically has a history of being approved as a salvage treatment for
other types of cancer and then, later on, winning approval as a
first-line treatment for those same cancers.
3) Avastin was only
approved as a salvage treatment for glioblastomas in May 2009. Thus,
there has not been enough time to establish whether it should be used as
a standard conjunctive treatment. It could be that we are simply six
months, or twenty-four months, too early in the research process, just
as patients with colo-rectal cancer were during the period from 2004 to
2006, before avastin was promoted from salvage to front-line treatment
for their disease.
4) Some preliminary studies of avastin as a
conjunctive therapy for gliomas have shown "unprecedented" results.

5) There are a surprisingly large number of clinical trials underway
(over a dozen) based on the hypothesis that avastin will prove helpful as a conjunctive
treatment for gliomas. It is reasonable to assume that there would not
be so much research if avastin did not show significant promise.
6 ) It could be that these studies will come up empty. The history of cancer
research is littered with once-promising drugs that failed to live up to
their potential. However, the risks involved in going forward with
avastin treatment now as opposed to later appear to be slight: i haven't
read anything that suggests that using avastin upfront will diminish
whatever effectiveness it might have after the chemo/radiation; nor is
it anywhere suggested that the standard chemo/rad treatment somehow lays
the groundwork for avastin to succeed. On the contrary: At least one of the studies speculates that avastin may have
synergistic effects with the radiation treatment. Another says there is
no reason to believe that avastin and the standard chemo/radiation
treatment will cause side-effects by being used in conjunction.
7)  No other
experimental drug is currently receiving anything like the same amount
of attention for the treatment of gliomas, as far as I can tell (which I am the
first to admit is not very far).
8) There is always a gap between the
time a drug shows promise and the time it is adopted. Within that time
frame, the interests--or to put it more mildly, the mindsets--of
patients and of the medical community can diverge. Doctors are
inherently conservative and have a responsibility to the research
process. They know that many drugs fail to live up to their promise and
they are loath to get out in front of the data. They know that future
patients will suffer if they jump from one drug to another. Our
responsibility is simpler: to pursue whatever offers the best legitimate
hope for our father.
9) Finally, to put it bluntly, with our father declining so
rapidly, we have to ask this question: what do we have to lose? What's the downside to getting him on
avastin now?

 

RE: Avastin as first-line treatment?

by flfrog on Fri Aug 28, 2009 12:00 AM

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I would talk to your dr. about it.  My dad did the standard radation, w/ temodar and then 6 months of the 5/23 temodar and was progression free for 6-9 months.  It was confirmed there were three additional tumors at 9 months but we saw slight changes during the three months prior.  He is on his 2nd clinical trial now which includes avastin and an MRI on monday shows the tumors are shrinking, however dad has so much damage now from all the treatments he is still declining.

Is the decline your experiencing now temporary due to the side effects from treatment.  The radiation can cause alot of swelling which can cause issues and they are more easily wiped out while going through treatments also. 

I would see when the dr. is going to do another MRI to determine if he is responding to the temodar and then when it progresses do the Avastin or if your dr. is supportive and your loved ones blood counts can handle the additional treatments go for it.  It's my understanding that the tumors respond to treatments and then mutate so the treatments are no longer effective.  If the temodar is working then it might be better to hold the avastin until it's time for another treatment. 

This is such a hard disease because everyone responds differently and there are so many trials out there.  Just don't 2nd guess decisions after you make them.  We can't go back and re-do so be as informed as possible and make a decision.

It's a hard journey but your loved one is lucky to have you as an advocate and will continually need you!

RE: Avastin as first-line treatment?

by mia66 on Fri Aug 28, 2009 12:00 AM

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I agree.  While Temodar is currently the frontline treatment, our NO told us that at least 50% fail.  The other 50% will always have Avastin to fall back on. 

We have been told that sometimes the cancer just gets "used to" the drug that is being taken and then it no longer works, just as with other drugs. 

At any rate, I am glad a drug like Avastin is on the market; and that it was made available to my husband.  His NO told us it is her drug of choice along with CPT11 for keeping the tumor at bay the longest and that she has several patients that are years out on this therapy. 

Our goal is to get to where my husband is taking these 2 drugs every 12 weeks.  We are currently on a bi-monthly regimen and hope to go to every three weeks very soon.  He has a MRI an SPECT coming up in 2-3 weeks after his 6th treatment. 

 M

RE: Avastin as first-line treatment?

by DavidA on Fri Aug 28, 2009 12:00 AM

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Thanks. It's important to be reminded that we shouldn't second-guess ourselves. we make the best decision we can with the info we have. The doctors seem pretty confident that it's not the treatments that are causing my father to decline. I've been surprised, however, that we don't have a more recent mri to check on the possible growth of the tumor. we're looking into asking the doctor about getting one.

RE: Avastin as first-line treatment?

by mia66 on Fri Aug 28, 2009 12:00 AM

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Likely they will not do another MRI until your Dad has completed radiation.  We had to wait a bit after radiation to get our first MRI.  I believe we waited around 2-4 weeks. 

The reason for this is that the radiation can swelling and can make it difficult to interpret a MRI.  They usually wait until the swelling is gone to do the MRI.

Have you talked with your Dad's doctor about possibly putting him on and/or upping his Dexamethasone?  Sometimes swelling in the brain can cause decline.

 M

RE: Avastin as first-line treatment?

by MamaWarrier on Fri Aug 28, 2009 12:00 AM

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Your father may need the help of steroids during radiation.  It's not unusual for symptoms to return during the radiation treatment.  My daughter experienced this during both experiences with radiation.  We were terrified that the tumor had returned because her symptoms were so similar to her pre-surgery condition.  With steroids, she was back to normal.

If he's not already on steroids, I would discuss this with the doctor. 

RE: Avastin as first-line treatment?

by mrs_fritz on Fri Aug 28, 2009 12:00 AM

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My husband did the standard protocol -radiation/lowdose temadar break then high dose. The temadar failed and he declilned alarmingly the last week of radiation and after. We upped his decadron which helped to no end. He was much better within a few days. He started on Avastin and his response was just short of a miracle. He will tell you today that he wishes he had never had the radiation and had started on Avastin first. At that time Avastin had not been given the ok by FDA for brain tumors, luckily our insurance was so great...they never questioned the Avastin. I'm not certain just how quickly they would have agreed if he had not gone the standard protocol first. In any case, push as much as you feel you need to. Nothing ventured nothing gained. We have all learned to be our loved ones advocate. Best wishes to you and your family. God bless you on this journey.

Mrs. F

RE: Avastin as first-line treatment?

by DavidA on Fri Aug 28, 2009 12:00 AM

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reply to Mia 66 and to MamaWarrier:
Thx, yes, he's gotten more decadron, which i guess is similar to Dexamethasone. But the doc's pretty sure that it's not the drugs or radiation that's causing him to decline so quickly.
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