Please Help..Doctors Are Too Slow?!!

Hi all, my Dad was diagnosed with GBM stage 4 one month ago. He has 4 tumors that are inoperable, so the docs said he will need whole brain radiation. But he has not even started radiation yet.  He has an appt next week to get his head mapped out for the radiation, but thats it. And he's not due to start on the Temador for at least 3 more weeks. Is this normal? With such an aggressive cancer I am really worried. It has already been a month with no treatment! Please someone tell me if these docs know what they are doing? Any advice would be greatly appreciated.

well, my twin had that too ... they did wait a hile to get swelling down with steroids. Maybe that si the hold up. I think they knwo best and we are so in the dark it scares us.

Good luck

 

On 7/19/2008 scrammie2213 wrote:

Hi all, my Dad was diagnosed with GBM stage 4 one month ago. He has 4 tumors that are inoperable, so the docs said he will need whole brain radiation. But he has not even started radiation yet.  He has an appt next week to get his head mapped out for the radiation, but thats it. And he's not due to start on the Temador for at least 3 more weeks. Is this normal? With such an aggressive cancer I am really worried. It has already been a month with no treatment! Please someone tell me if these docs know what they are doing? Any advice would be greatly appreciated.

glioblastoma Multiforme is the most common and most aggressive type of primary brain tumor, tumor markers  stage 4 From Wikipedia, the free encyclopedia Treatment can involve chemotherapy, radiotherapy, and surgery, all of which are acknowledged as palliative measures, meaning that they do not provide a cure. Even with complete surgical resection of the tumor, combined with the best available treatment, the survival rate for GBM remains very low. However, many advances in microsurgery techniques, radiotherapy and chemotherapy are slowly increasing the survival time of patients diagnosed with glioblastoma.  I wont ask what the symptoms are

I just remembered  I do know of a drug is called Avastin and I think it is FDA-approved for colon cancer but not sure it has been approve yet for brain tumors. I heard of patents with brain cancer here getting some amazing good results from this. in only a few weeks  I been told  Since September 2006, they have been doing a phase II clinical trial at NIH in Bethesda, Md. So if you like to contact them they may be able to help for the alterative side cancer patient have stated they have been getting the same good results just from drinking a lot of green tea there are other teas you can try one is Flor Essence tea the other is Essiac tea hope this helps God bless and  take care Ray

 

On 7/19/2008 scrammie2213 wrote:

Hi all, my Dad was diagnosed with GBM stage 4 one month ago. He has 4 tumors that are inoperable, so the docs said he will need whole brain radiation. But he has not even started radiation yet.  He has an appt next week to get his head mapped out for the radiation, but thats it. And he's not due to start on the Temador for at least 3 more weeks. Is this normal? With such an aggressive cancer I am really worried. It has already been a month with no treatment! Please someone tell me if these docs know what they are doing? Any advice would be greatly appreciated.

hi I was right I found this is an old email it was in the brain tumor foundation Forum it gos back to november 2006 and I checked this out with one of the cancer patients I see at the cancer clinic he said it was right. also as I said I have heard patients talking about Green tea and the other teas  helping with cancer  hope it helps Ray

Hello all, I was diagnosed with a GBM stage4 on 11/4/04. Since then, I have had 3 surgeries and 4 types of treatments. I started at NYU, then switched to Sloan-Kettering. I treated there for a year and a half with some success before the tumor became resistant to the Cilengitide treatment I was on. I was also on Temodar before and after the Cilengitide, but it was ineffective. In July of 2006, I was sent to NIH by my Sloan-Kettering oncologist because there was nothing else Sloan could offer. Since September 2006, I have been doing a phase II clinical trial at NIH in Bethesda, Md. The drug is called Avastin and is FDA-approved for colon cancer but not yet for brain tumors. My wife and I travel from NJ to DC every 2 weeks for my treatment. We have spoken to numerous patients who are having absolutely fantastic results after a few treatments. I have already seen a size reduction in my tumor. To all those who are losing hope -- Please don't!! Stay strong and ask your doctor about the Avastin trial at NIH.

Avastin has been a real boon to many patients, including me. I had to discontinue Temodar last Sept after my counts crashed. 3 months of nothing allowed the tunor to re grow, which required another surgery in Nov 2007. But I have been getting the every other week treatment of avastin and am doing well. The only bad side effect I deal with is high BP. I always had low BP until avastin. Now I have to take lisinopril to keep it under 170/92.

There are some dangers and side effects to Avastin, but then again we are treating brain cancer, not the sniffles, so the risk is worth it IMO.

The brain mapping you mentioned is critical to the overall treatment plan your doctors are creating. So, that step does represent progress. I do know how frustrating the waiting game can be, and often frustration rises out of a lack of communication, which unfortunately doctors can be famous for. I encourage you to get the answers you seek from the doctors and the nurses that work for the doctors. I found that by being the squeaky wheel, I got the reassurance I needed, and sometimes was able to expedite the process. Most doctors see way too many patients, in my humble opinion, and their time is short. Prepare your questions in an organized fashion in advance before you call or visit, and make sure you get all your answers. Some doctors allow tape recorders which can be helpful, because lets face it, in the heat of the visit where the topic is anything but light conversation, emotions and information overload can be impediments to remembering helpful information later on. -IF- you feel like your really not being cared for properly, or despite all efforts to get answers your needs are not being met, it is certainly with in your rights as patient/caregiver to seek out a second opinion.

 

On 7/19/2008 texasbelle5 wrote:

Avastin has been a real boon to many patients, including me. I had to discontinue Temodar last Sept after my counts crashed. 3 months of nothing allowed the tunor to re grow, which required another surgery in Nov 2007. But I have been getting the every other week treatment of avastin and am doing well. The only bad side effect I deal with is high BP. I always had low BP until avastin. Now I have to take lisinopril to keep it under 170/92.

There are some dangers and side effects to Avastin, but then again we are treating brain cancer, not the sniffles, so the risk is worth it IMO.

I really don’t like recommending these drugs I know I recommended this one   but if a cancer patient only has weeks to live what can you do. The problem with these drugs is the plant they come from has other properties that all so help but drug companies only extract the one chemical they think works best. Some other patients have told me that some of the teas work just as well the problem is it alterative medicines and  take a long time to work maybe years people don’t want to wait that long and alterative medicines   can be easily stopped from working just by having sugar

If you think the Dr's are not acting fast enough, ask them why they are taking so long. Maybe this is normal and they can reassure you of that.

 

On 7/20/2008 bboopms1 wrote:

If you think the Dr's are not acting fast enough, ask them why they are taking so long. Maybe this is normal and they can reassure you of that.

?could you please read the other post on this

Hi-- i think it's all pretty normal.

Most people wait about a month to begin treatment.

Temozolomide with radiation is the std of care now for brain tumor patients. Your Dad will continue that at a stronger dosage when he's done with RX-- as long as his blood counts are alright. So it's important that you do everything you can do boost the immune system. I'd suggest looking into some suppliments that do that.

If he's not responding well and there's still growth with temezolomide then you'll try something else-- another chemo drug-- there are several out there-- pick ones that are common-- i'd stay away from 'trials' you don't want to become anyones experiment.

 I would suggest trials though if it's alternative treatments to be taken in conjunction with chemo. Remember-- these suckers are VERY aggressive-- so you've got to hit them with all you can.

I would suggest visiting the "DCA site" it's an old drug that's being used to treat cancer off-label.

Good luck and remember take time to make your decisions.