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HopeLoveFaith516
Posts: 9
Joined: Jul 2011

Hi all, I can't tell you what a relief it was to find these boards after my husband was diagnosed with AAIII. Unfortunately, I found them too late for some of the information to be useful BUT you always gave me HOPE. My husband is losing this battle quickly and the doctors have told me that there is not much more they can do w/o altering his quality of life and it wouldn't change the outcome. He has not responded to the radiation/Temodar/Avastin. The tumor continues to grow (it was inoperable from the onset). Carboplatin and BCNU are the next options according to the doctors but they feel that clinically he is not strong enough (he's sleeping 20 hours a day) and that it would just weaken him and make him sicker during his last days. Does anyone know of any other therapy/doctor/hospital that is offering any other treatment? I am having such a hard time with this...I want to explore every option before making this awful decision. Please help.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I am sorry you are going through all of this. I don't have your husband's chart and I am not a specialist so please take my advice with a grain of salt... By all means I do not pretend to be a Neurologist Oncologist.

Lately I have been reading a lot on gene therapy and oncolytic viruses and vaccines. It makes sense to me that this will be the future cure for cancer in the next 20 years.

Have you looked into oncolytic virus therapies? They are mostly in phase 1/2, a few are in phase 3. The field has made important discoveries in last 10 years.

Many of the clinical trials have strict inclusion/exclusion criterias.

here are a few (and the list is by far not complete): most are for recurrent/or new GBM or grade 3

1) Delta-24-RGD replication-competent adenovirus (MD anderson)
2) DCA (University of alberta)
3) Modified Polio virus (Duke)
4) The modified herpes virus HSV1716 (University of Glasgow)
5) The reovirus REOLYSIN (Cedar-Sinai)
6) The Dendritic Cell Vaccine (Cedar Sinai, UCLA, Duke)
7) IMA950 is a therapeutic multi-peptide vaccine at the NIH
8) The modified Measle virus (Mayo)
9) IMA950 (A Novel Multi-Peptide Vaccine) Plus GM-CSF (in the UK)
10) UCLA Linda Nau: have 2 studies where either the patient or a healthy volunteer immune cells are taken and exposed to the tumor. The retrained new and improved immune cells are given back to the patient so that the tumor can be killed.

I heard some clinical trials are also being done in Montreal, Italy, Austria and China. I am not done researching all of it.

My sister has been diagnosed with AA 3. She is undergoing the traditional treatment (surgery, radiology and Temodar). I hope it makes the tumor go in remission for a very very long time. Unfortunately, this MONSTER has a high recurrence rate. So meanwhile I am just trying to prepare (if one can even be prepare in the face of this hateful disease) if it comes back. Also I know that surgery, chemo, radiation etc is all necessary now, but it still strikes me as barbaric/dark ages to open someone brain. I imagine gene therapy as a much more elegant way to treat and cure cancer. I cannot wait to read one day that a cure has been found.

I don't know if my rambling is useful. Like I said I am not a specialist and would always go with your docs or... seek a second opinion.

Kindly,

Julia

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I would also suggest looking at the National Institutes of Health (NIH), the National Cancer Institute (NCI) and look here at the American Cancer Society to see what trials they list.

You may also want to check with your hospital or clinics in your area to see if any of them are offering trials that may be useful to your husband.

You have probably already done this, but please also make sure you seek a 2nd, 3rd or 4th opinion about your husband's, treatment options and his longevity options. You'd be surprised that doctors that practice in the same area of town might know 2 totally different therapies that the other does not know about.

Peace,
Teresa

Beckymarie
Posts: 358
Joined: Aug 2009

I struggled with my response to your posting. I understand where you are at right now, as I was there 15 months ago with my husband. After radiation/temador/avastin, his tumor progressed. He was paralyzed on the right side and his speech was gone. His oncologist through out several options, but was very clear we would only be buying time...maybe another month or two. I looked at my poor husband who had endured so much and knew in my heart it was time to help him reach some level of peace with what was inevitable. It was hard and heartbreaking, but we went home and called hospice. Please understand this was the path we chose. Life without him has been harder than anything I have ever had to go through, but I could not watch him suffer any more. I wish you and your husband the very best.

ldguerra's picture
ldguerra
Posts: 41
Joined: Jul 2011

I could imagine what ur going thru. I am so sorry to hear ur story.I would like to tell u my story. My hub was dx last yr with acc in paranasal sinus. IN his second ct scan this yr, he was told that in the last six months his tumor started to grow back into the brain and his left maxillary sinus. When he was told this, he said he would not like any more treatment he is not willing to go through chemo and rads again as when he was in treatment it was too hard on his body. The doctor, looked at us and ask how do we feel about alternative medicine. He said he had nothing to lose. She mentioned that here that this fern has been used by several persons who had cancer and they were help that when they returned to start chemo it was not necessary. This fern is called rabbit foot fern (polypodia aureum). Hub has a month on this herb and i have seen positive change in his behaviour and those horrible symptoms he was having. I am not saying that this is a miracle herb, i looked it up and it's extract is used successfully in skin cancers. I think when docs say there is no nothing else, it's worth the try. Hub is more alert, his eyes have started to separate as the right was pushed in, his body muscle spasms have disappeared. I do think these are good things. I do hope my story helps u at least to know that there are alternatives. Hugss and prayers

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