long-term effects of avastin treatment

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long-term effects of avastin treatment

by April56 on Mon Feb 02, 2009 12:00 AM

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Hello,

After  a setback for his GMB my husband (dxMatch'08, radiation 6wks, temodar till Sept'08) has been treated for four months now with Avastin/CPT11. He feels very good and the last two MRI scans have been stable. The docs are not sure if the residual enhancement is due to treatment effects, tumor, or some combination of both. We had hoped to continue with this treatment for at least a year (since this appears to be the most typical treatment length). However, on the last visit with the neuro-oncologist he warned us about new evidence that long term treatment with Avastin can actually cause cancer cells to sread to the whole brain. We were given the choice to either continue with the treatment or stop and wait until MRI's (god forbid!) show recurrence.

Can you please give me your experience? How long did you/your loved one take Avastin and did they aftewards discover it maybe did harm? Are there survivors out there who have been on Avastin , stopped and are doing well for a long time after wards?

thank you for sharing your experience.

April56

 

RE: long-term effects of avastin treatment

by Wissis on Mon Feb 02, 2009 12:00 AM

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On 2/2/2009 April56 wrote:

Hello,

After  a setback for his GMB my husband (dxMatch'08, radiation 6wks, temodar till Sept'08) has been treated for four months now with Avastin/CPT11. He feels very good and the last two MRI scans have been stable. The docs are not sure if the residual enhancement is due to treatment effects, tumor, or some combination of both. We had hoped to continue with this treatment for at least a year (since this appears to be the most typical treatment length). However, on the last visit with the neuro-oncologist he warned us about new evidence that long term treatment with Avastin can actually cause cancer cells to sread to the whole brain. We were given the choice to either continue with the treatment or stop and wait until MRI's (god forbid!) show recurrence.

Can you please give me your experience? How long did you/your loved one take Avastin and did they aftewards discover it maybe did harm? Are there survivors out there who have been on Avastin , stopped and are doing well for a long time after wards?

thank you for sharing your experience.

April56

 


April my bro was on this treatment for 25 cycles - which is about 10 months. It worked quite well, but once it stopped - it was all down hill. There are others who are having great success with it, Some are on the Avastin alone - no chemo.

 I never heard that about Avastin causing the cancer to spread. I wonder if any one has a link to the most recent results regarding Avastin. If so please share.

This is a roller coaster and we are all desperate for the right answer. The answer is  - there is NO RIGHT answer. Research is ongoing for a CURE and until that happens  all we can do is to cherish each day our loved one survives.

My brother found his heavenly rest on Christmas day. But he had a few great months due to the Avastin/CPT and I am grateful for that time.

Prayers, hope and trusting God to handle it - that's all we really can do.

Eileen

 

RE: long-term effects of avastin treatment

by VA_Husband on Mon Feb 02, 2009 12:00 AM

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Hi April:

My wife has been on Avastin only for 13 months now. We were never warned about it causing the spread of tumors, so I'm not sure where this is coming from. For us, it has worked well and the only concern, which is monitored in all cases, is high blood pressure,white and red blood cell counts, and irritations to the digestive system.

You can call Genentek, the drug maker and ask this directly to the medical researchers there. I have called before and they seem very forthcoming and helpful.

I will keep you in my thoughts.

 

Chuck

RE: long-term effects of avastin treatment

by jackiekay on Mon Feb 02, 2009 12:00 AM

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My husband's neuro-onc at the Cleveland Clinic told us the same thing about avastin.  He feels its long-term effects are not proven yet and there is evidence of cancer cell migration.  He felt that it is best used only if absolutely necessary.

Jackiekay

RE: long-term effects of avastin treatment

by April56 on Mon Feb 02, 2009 12:00 AM

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Hi Jackiekay, what  is your husband's treatment now? If he was on Avastin and discontinued because of concerns, what treatment can one do next? This is what my husband's neuro-onc. suggests - if we decide to discontinue , just wait and do MRI scans to monitor. Can one simply stop treatment and wait, knowing how scary this disease is?

thanks so much, April 

RE: long-term effects of avastin treatment

by Gbm_Wife on Mon Feb 02, 2009 12:00 AM

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There was just this discussion on the yahoo BT list.  Apparently some Drs. are cautioning against long term use.  My husband took avastin and cpt11 back in the spring of 2006.  His MRI showed enhancement and he started getting some aphasia.  After his first treatment the aphasia stopped, his MRIs looke good.  He did the treatment for 3 months but could not tolerate the cpt11. Back then they did not do avastin only.  He decided to quit and went on gleevec for a year.  He stopped that and decided no more treatments.  He was tired of everything and that was 2 years ago.  He is a five year GBM survivor. 

RE: long-term effects of avastin treatment

by HeadsUp on Mon Feb 02, 2009 12:00 AM

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This is a new one for me. I've never read of heard of this side effect...

Tim has been on Avastin/CPT-11 combo for 13.5 months and is doing really well. He does have the gastro side effects and they seem to be getting a bit worse each treatment but all in all... doing well.

If you do call the drug co...please post what their response is.

I too have heard of people doing Avastin alone and doing well. I've heard of some who stop treatment and continue to do well. There is no right or wrong. We are all just "gambling" with every treatment with this beast.

Good luck!

Blessings...

RE: long-term effects of avastin treatment

by bugsy57 on Tue Feb 17, 2009 12:00 AM

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dear april56. as with cancer it effects everyone diffrently. so then treatment act the same way. i have stage 4 colon cancer.have had since 2005. when i was first diagnosed i was given a 45% chance to survie 1 year.it was explained to me there was no cure for my stage of cancer.but after 3 rounds of chemo drugs , 1 major surgery , 6wks of radiation and over 2years of Avastin here i am. only side effect i seem to be experencing is some high blood pressure some weight gain lots of energy oh yes 3 beautiful grand children! oh what a joy.! i was told by my onocologist that as long as i take avastin i would probably get to see them grown married and having their own children. still tring to get a grip on that one. we did stop the avastin for 3 months one time. the cancer came back fast! i still have a few small leisions in my lung. but nothing bothersome, i have to take blood pressure meds now.but im getting older, must be a side effect from old age.! some bowl issues but no bleeding. i asked once How long can i keep taking avastin? doc said for as long as it works. it is a new medicine and hasnt been around that long so long term use information is limited.  i guess my bigest problem  now is Living with cancer. ill take it!  

RE: long-term effects of avastin treatment

by bshapi on Mon Mar 09, 2009 12:00 AM

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I have been on avastin for two years. Started in Feb '07 with stage-4 lung cancer with three months to live. Started with Carbo-platin and avastin and went into remission. Came back and did Taxotere with avastin and went into another remission for the last year but kept up on avastin every three weeks. Get my next scan next week to see what is going on. I also went to naturopath who really helped with keeping my immune system up so I never became sick through all of this and I believe it really helped. I do not know how long I can take avastin.

RE: long-term effects of avastin treatment

by Ricki on Sun Jun 06, 2010 03:07 AM

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My husband has been on Avastin/camptosar since February 2008. He stopped the camptosar last summer and took only Avastin every 2 weeks. Since his MRIs have been stable he changed his frequency of the Avastin infusion to every 3 weeks last Christmas. UCSF had suggested to stop Avastin all together. Duke University said: Don't stop, go to every 3 or 4 weeks instead. They argued that if treatment is stopped and tumor recurs it would be much harder to treat. If the next few MRIs are still stable he is thinking about possibly going to every 4 weeks of Avastin. The only side effect he has had is high blood pressure and he takes medication for it. Last week he had infusion #57 of Avastin since February 2008. Anybody else out there who has been on Avastin long term for brain cancer?

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