My wife needs your Avastin story ASAP...

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RE: My wife needs your Avastin story ASAP...

by amygaber on Tue Apr 14, 2015 12:01 AM

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On Apr 01, 2015 4:44 AM GoodOlDan wrote:

My wife has had recent MRIs that reveal a second recurrence of the GBM IV tumor in her right temporal lobe, in addition to a new tumor on her left thalamus and a few new suspect lesions "within the right superior peduncle and right lateral aspect of the cerebellar vermis" (wherever that is). Two well known neurosurgeons both say surgery (even laser surgery) is not something they would do now (due to the multi-focal nature of the disease and difficult location of the thalamic tumor). There are no clinical trials of interest that she would qualify for, as she now has multi-focal disease that has crossed the midline of the brain. The radiation oncologist at MD Anderson says radiation therapies (including proton and gamma knife) are out at this time as well. The Optune (ex-NovoCure) TTF system is also not suited to dispersed, multi-focal disease (and my wife had previously nixed it due to the device weight and the "lifestyle" it dictates). The consensus of her three neuro-oncs is that the best treatment for her would be Avastin combined with Lomustine/CCNU.

For the past several weeks while this has all evolved, my wife has agonized over her choice of trying the Avastin/CCNU treatment or not. She has been a real trooper in the 26 months since she was first diagnosed, with a lot more bravery than I think I could muster. But she has experienced so many horror stories of terrible reactions to anti-seizure meds, temozolomide, radiation, painful failed attempts at starting IVs into her tiny veins (with veins often "blowing" during the process), recovery from two craniotomies, incredible weight loss and more. I don't have to tell most of you about these terrors... many of you have lived through them and worse. The thought of this new treatment has her terrified. The only alternative at this point is probably hospice (possibly with some continuing "under the radar" alternative treatments).

We visited the local medical oncologist today who would provide the Avastin infusions if my wife decides to go ahead with the treatments. We talked about a venous port to avoid the IV issues, and she was receptive to that. But the hard questions... "will it really help me, and for how long?", "what are the side effects?", and "how will I feel?"... are ones that the doctor can only give the "canned" responses to. "Yes, there are potential side effects" (followed by a long list that would scare anyone), "No, there are no guarantees that it will help you at all". And, oh yes... "this is your decision, so get back to us ASAP and let us know what you'd like to do. Buh bye". No wonder the pain-free serenity and preservation of "quality of life" that hospice can offer is attractive.

I've spent so many hours on these forums over the past two years reading, researching and learning. I've read countless stories of folks who have started Avastin... some doing well, others not. Some using Avastin alone, some using it in combination with other drugs. Some with terrible side effects, while for other it was a breeze (well, comparatively speaking). My wife and I need your help now. I could try to compile a list of these stories for her... but time is very short, the doctors are pressing her for an answer, and most assuredly the cancer is not taking this time off from its dirty work in her brain.

If you would be so kind... if you or your loved one have experience using Avastin for recurrent GBM (alone or in combo with other meds), could you please post your story here. Was it effective? How long did it prevent further progression of the disease (if it did)... or until it failed. What side effects did you experience, and how were they managed. If you had it to do over again... would you make the same choice? 

I'm hoping that your responses will help my wife (and others) in making a very difficult treatment decision. Thank you in advance for your help!

Dan

my husband has been on avastin for 2 and a half years non stop.  Relatively no side effects.  He also had a port put in immediatly after his craniotoy so as not to even "deal" with his veins.  I truly believe this is what has kept him alive with good quality of life.

RE: My wife needs your Avastin story ASAP...

by Kevlar on Tue Apr 14, 2015 12:53 PM

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K2 here, Alberta Canada. 3 + years ago my reoccurance was thought to be a GBM but no biopsy as considered inoperable, one Doc gave me 6 weeks to live brought in hospice team etc. also as a last hope put me on the 2 week Avastin program. That was February 2012 and my story has been a successful one (certainly) so far. I often take a Natropathic Vitamin C nice tin to boost immune system (unclear it does a lot), no port, no significant side effects. It's not covered here so very expensive, ~$200k per year but working. I have MRI every 3 months and one schedule for this Thursday. There are other treatments now, such as Polio vaccine at Duke and various laser treatments! What side effects are u concerned about? Good luck and call me if can help further. K2

RE: My wife needs your Avastin story ASAP...

by lauryjeanh on Thu Apr 16, 2015 03:08 PM

Quote | Reply

On Apr 01, 2015 4:44 AM GoodOlDan wrote:

My wife has had recent MRIs that reveal a second recurrence of the GBM IV tumor in her right temporal lobe, in addition to a new tumor on her left thalamus and a few new suspect lesions "within the right superior peduncle and right lateral aspect of the cerebellar vermis" (wherever that is). Two well known neurosurgeons both say surgery (even laser surgery) is not something they would do now (due to the multi-focal nature of the disease and difficult location of the thalamic tumor). There are no clinical trials of interest that she would qualify for, as she now has multi-focal disease that has crossed the midline of the brain. The radiation oncologist at MD Anderson says radiation therapies (including proton and gamma knife) are out at this time as well. The Optune (ex-NovoCure) TTF system is also not suited to dispersed, multi-focal disease (and my wife had previously nixed it due to the device weight and the "lifestyle" it dictates). The consensus of her three neuro-oncs is that the best treatment for her would be Avastin combined with Lomustine/CCNU.

For the past several weeks while this has all evolved, my wife has agonized over her choice of trying the Avastin/CCNU treatment or not. She has been a real trooper in the 26 months since she was first diagnosed, with a lot more bravery than I think I could muster. But she has experienced so many horror stories of terrible reactions to anti-seizure meds, temozolomide, radiation, painful failed attempts at starting IVs into her tiny veins (with veins often "blowing" during the process), recovery from two craniotomies, incredible weight loss and more. I don't have to tell most of you about these terrors... many of you have lived through them and worse. The thought of this new treatment has her terrified. The only alternative at this point is probably hospice (possibly with some continuing "under the radar" alternative treatments).

We visited the local medical oncologist today who would provide the Avastin infusions if my wife decides to go ahead with the treatments. We talked about a venous port to avoid the IV issues, and she was receptive to that. But the hard questions... "will it really help me, and for how long?", "what are the side effects?", and "how will I feel?"... are ones that the doctor can only give the "canned" responses to. "Yes, there are potential side effects" (followed by a long list that would scare anyone), "No, there are no guarantees that it will help you at all". And, oh yes... "this is your decision, so get back to us ASAP and let us know what you'd like to do. Buh bye". No wonder the pain-free serenity and preservation of "quality of life" that hospice can offer is attractive.

I've spent so many hours on these forums over the past two years reading, researching and learning. I've read countless stories of folks who have started Avastin... some doing well, others not. Some using Avastin alone, some using it in combination with other drugs. Some with terrible side effects, while for other it was a breeze (well, comparatively speaking). My wife and I need your help now. I could try to compile a list of these stories for her... but time is very short, the doctors are pressing her for an answer, and most assuredly the cancer is not taking this time off from its dirty work in her brain.

If you would be so kind... if you or your loved one have experience using Avastin for recurrent GBM (alone or in combo with other meds), could you please post your story here. Was it effective? How long did it prevent further progression of the disease (if it did)... or until it failed. What side effects did you experience, and how were they managed. If you had it to do over again... would you make the same choice? 

I'm hoping that your responses will help my wife (and others) in making a very difficult treatment decision. Thank you in advance for your help!

Dan

Dear Dan,

I am crying as I read your post. You and your wife are going through hell right now so this may sound crazy but I look at you as being blessed because of the love that you share.  My husband left me for another woman during my fight against breast and ovarian cancer (which I have won, for now).  I can't even imagine the pain and suffering you both have faced but I think I would try anything that might make me better so I could spend more time on this planet with a husband like you.

RE: My wife needs your Avastin story ASAP...

by bamabuck on Wed Apr 29, 2015 09:32 AM

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wife has been on Avastin for 6 months at twice monthly and had no issues at all. She is also on Novocure/optune and is doing really well were 11 months into her GBM and between the 2 it is holding the cancer at bay. None of thse are a cure but a defense and a way to prolong life. The good thing about avastin in our case is no side effects and no detrimental effects.

My wife is 48 and in perfect health except for her GBM. She has a great attitude and is fighter. A support group makes a huge difference in the care for a GBM patient. I have 3 kids who have put their lives on hold to help. they are 24, 22 and 18 and the take care of my wifes every need. 

Bottom line is im all for Avastin and how it works

THANKS ALL 

Joe

RE: My wife needs your Avastin story ASAP...

by GoodOlDan on Wed Apr 29, 2015 01:18 PM

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Thanks to everyone who offered their experiences and advice.

Although my wife did begin the Avastin/CCNU, with sadness I have to report that the GBM finally claimed her last week.  She was in a hospice environment at the end, and didn't suffer... at last her long stuggle with this miserable disease is over.

She fought it valiantly, and lived life fully for as long as possible.  My wife taught me the true meaning of courage. She was the love of my life, and only in time will I understand all the ways that I'll miss her.

RE: My wife needs your Avastin story ASAP...

by JenniferONeal on Wed Apr 29, 2015 01:29 PM

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Dear Dan,

So very, very sorry to hear this news this morning.  My husband Patrick passed away nearly three months ago and I still can't comprehend all that has happened to us in these last two years.  I find it is an honor to mourn so deeply for those who have fought so nobly. May the love of family and friends surround you today.  

Jennifer

RE: My wife needs your Avastin story ASAP...

by SarahGrey on Wed Apr 29, 2015 07:41 PM

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Oh Dan, I'm so so sorry...  I'm so sorry for everything you both went through and wish you nothing but peace at this time...  GBM is such a cruel beast...

Please take it one day at a time and be gentle with yourself and grieve as you need to.  

Thinking of you,

Sarah 

RE: My wife needs your Avastin story ASAP...

by eternalife on Fri May 01, 2015 12:38 AM

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Sorry to hear Dan, you can be proud you were with your wife til the end. I read a post about one lady, whose husband left her in her days with cancer. This quite typical, many spouses can't handle the uncertainty and frankly selfish who did this.

I lost my husband of 33 years to esophageal cancer , almost two years ago..it seems like yesterday , it will not be easy for you, but surround yourself to those that appreciate the kindness you have already shown for your wife. One day at a time.. stay away for people with advice who have not walked the walk.. they mean well, but really have no idea...

Best

RE: My wife needs your Avastin story ASAP...

by bamabuck on Fri May 01, 2015 07:47 AM

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Dan

Your in my prayers very sorry for your loss.

RE: My wife needs your Avastin story ASAP...

by herrmajo on Sun May 03, 2015 10:36 PM

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I'm so sorry your on this journey. Doctors nor anyone else can tell you one way or another what is the best choice, because no one really knows with the nasty GBM. Every treatment out there is really a crap shoot as some respond to treatment and others don't. We did not have a good experience, the side affects and risks are very real. I guess you need to weigh one way or another if those risks are worth it, but we decided if we do nothing we know the road we are going down and if we try it, who knows maybe it will work for us and give a little more quality of life. Good luck to you and your wife and hope you's are some of the lucky ones that it works for if you choose that road. Prayers to you and everyone going through the GBM journey!

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