DCA, RKD, Avastin

Hello All,

Thank you for love, support and sharing your story. It has been good to find this site, but very hard to process. My lovely beautiful sister is 41 years old and was diagnosed with GBM4 2 months ago. She had a re-section and 2 of the 9 tumors were removed. She began Temodar and IMRT Radiation and finished a few weeks back. The follow up MRI showed the remaining tumors have grown together and are a larger mass. She has been on a strict Reduced Ketogenic Diet (RKD) for last 1.5 months. The new Oncologist recommended Avastin, keeping with the Standards of Care. We have been looking into DCA and think it may be a better avenue, especially at this stage. I am fearful after reading about Avastin and what others have experienced. I am under no illusion that this is a curable disease, but feel that we should review all options as Caregivers and be the voice for our loved ones. The Doc approved the DCA script and we found a pharmacist to compound. Kelly began DCA Sunday and Avastin treatment is scheduled for this Thursday. She has lost 25-30 lbs, not sure if this is because the Chemo/Rad took its toll or because of the end stage you all are talking about. She is incontinent and can walk and stand, albeit sometimes unsteadily. Speech is there, but comes and goes, the hazy days... Some days are better than others as you all know. She had one Seizure last week and ER Doc said she should have had more? Not sure if it is because of RKD or not? Has anyone else at this stage done a combination of RKD or a modified Atkins Diet? Anyone tried DCA? Avastin success or regrets? The Oncl claimed to have never heard about DCA or an RKD diet. He did some research and contacted some colleagues at MD Anderson where he previously practiced. A few of them are using it "off the grid" and are aware of it. The University of Alberta study is what many people site as evidence and hope. We have also contacted Dr. Zuccoli about the RKD and his success with his mother's treatment.

I apologize in advance if this is wrong section to post this in. I am new to this and wanted to read/share about the stage we are at and what happens next.

Thank you and much love for you all.

Report post

9 replies. Join the discussion

I have no experience with chemo or radiation regarding my mom. Regardless, all I can tell you is to watch your sister's behavior closely. If it is a steady decline, be prepared.

By the time my mom was diagnosed (62 yrs old), it was too late for any after care once they removed 60% of the tumors, there were too many. She was diagnosed 7/27/2012 and passed 10/30/2012. She had a steady decline over the 3 months. She was placed in Hospice care after leaving the hospital after surgery. (this is a non profit service free for anyone with a terminal illness).

I am not trying to be Debbie Downer here, just sharing my experience with this terrible disease.
I also say all this because you indicate that her remaining tumors have grown together.

Love to you and your sister. It's a TOUGH situation to be in, I know all too well. :(

Report post

KellysSister,

Your story is interesting. I tried to get my sister to do the ketogenic diet but that was way too difficult for her cuz of the Decadron that causes her to be ferociously hungry for carbs. I know about the DCA; I'm surprised you were able to get a MD to prescribe it. I'm still having deliberations with my family about my sister starting Avastin. I was against chemo and it ended up not working for her but she wanted it. My sister is endstage now and I feel that it is worth trying it at this point. If she gets sick from it then we can have it stopped. It seems like the radiation didnt help our sisters. I'm curious how things turn out for you. You can friend me if you like. My sister is 52. That is her in the profile pic about 1.5 yrs ago.

Report post

Dear Bonkerstothemax,

First off, your sister is very lovely and beautiful. I am happy she has you to care for her. Thank you for your thoughtful reply.

The RKD has been a bit of a struggle at times, as Kelly is very sick of eggs! We have modified many recipes to give her a treat, like low carb donuts, chocolate-like creamy frozen stuff and ice cream with vanilla stevia and heavy cream. Her husband is results oriented and I am more sympathetic and want to give her Chik-Fil-A whenever she will eat, so we have a good Yin/Yang balance for Kelly. There are 2 schools of thought, do you keep pushing her on this diet and hope you are doing the right thing or loosen up because this may be last piece cake she ever eats? It is a daily struggle, especially now that we doubled Dexamethasone while beginning Avastin, in hopes Avastin will allow us to lower her off the steroid completely? Side effect of more steroid means more coherent and awake sister, but headaches return.
We consulted another Oncl only as an opinion and he said we could transition to modified Atkins and have same results. This particular Oncl has a brother with GBM and has kept him alive for last 8 years on RKD/Modified Atkins after removal of 1 tumor and Avastin, so slightly different from sisters 9 tumors. Which is good news.

The DCA was a struggle to find an Oncl that was interested. We are in Dallas and her Oncl practices out of Baylor Hospital. He was willing to try it after some research, and make her own trial of it. But like you said at this stage what do we have to loose? Could stop or lower dose if have side effects. I was nervous about Avastin last week, but we went ahead anyhow. The IV made her arm numb for a few days, and I was worried it was Neuropathy already? But just a thicker med for her little veins to take, so I hope.

When you say sick, it is relative, at least from my point. Kelly had been vomiting most of her food up for many weeks after Rad/Chemo. The consulting Oncl ordered numerous tests to see if her main Oncl had missed any deficiencies. Turns out she a bacteria infection H Pylori, perhaps causing the vomiting and re-flux? Who knows.... also the headaches are ever present. So if we can get her to keep food down and lessen headaches, a little sickness is okay at this point. Has your sister had more symptoms than the expected? I am curious to know.

As we progress down this journey, I will keep you posted on what seems to be having a positive effect on her. Please feel free to message me if I did not answer your question.

Lots of Love and Prayers for you,

Jenny (KellysSister)

Report post

Hi Jenny,

Such a small little world. I had to decipher whether or not you were talking about my lovely, beautiful, young sister Kelly, also 41 battling a February 2012 GBM diagnosis. It started with a seizure last February, and she was admitted to the hospital after they found "something on her brain". It was in fact a tumor, early stages we were told. They removed what they could when they went in to biopsy it, but it is in an otherwise inoperaple spot. She had since been on Temodor and gone through radiation, but just a few weeks ago, after an MRI, it was confirmed that the treatment was not working, and that the tumor had grown.

She just started Avastin 2 weeks ago, and an MRI will tell us in a few weeks whether or not its working. In just the past month, Kelly has lost use of her right arm, and leg, as the tumor has grown and it's pushing on a nerve. She can still walk with a walker in her home, but outside of it she needs to use a wheel chair. This has been crushing to all of us, and to her. She has a lot of panic and axiety, which seems to be the worst part of all of it. I think she could handle the physical side effects, but the anxiety is debilitating. The steroids that she is on makes matters worse - not being able to sleep, giving her a "shaky feeling". We live in another state (my parents and I) so we are taking turns being there, and thankfully she has a wonderful, loving supportive husband (and 4 beautiful children).

I just found this site tonight, and strangely enough, yours was the first post I came across while looking for answers on how long it takes for Avastin to shrink a tumor. We are all praying, and trying to stay mindful that miracles do happen. I will be keeping both our Kelly's in my prayers tonight and every night. I'm so sorry that we are both on this thread talking about this. :( Sounds like your sister has a very loving sister watching her back. There are stories of hope out there. As a rule of thumb, I try not to research too much as there is a lot of depressing stuff to read too.

P.S. Kelly was not on an RKD diet. She didn't even know what it was when I asked, so I'm guessing her dr.'s didn't propose that to her. She has stayed incredibly healthy. She has limited all carb / sugar intake. I try to coax her into treating herself to a candy bar, or ice cream, but she will only eat healthy, organic foods. I'm not very educated on her diet, but I know she has spent a lot of money on shakes, and supplements.

Sending you, Kelly and your family love.

Report post

Jenny,

Thanks for the nice compliment on my sisters pic. I know what u mean about feeling bad about depriving your sister from the sweets. I guess it's ultimately up to your sister if she wants to keep up with the diet. You all can keep guiding her for less sugar.

I'm surprised they had to double the dexamethasone to start the Avastin on your sis. That's the major reason I would like Sylvia to start the Avastin to come off the steroids. How long does she have to be on high steroid dosage? But then, since she's still having headaches it is most likely a good idea. My sister, thank God, doesn't have much pain. She basically progressed with manic type behavior and rages. She started demanding to go out to grocery stores, fast food restaurants everyday and needed food throughout the nite. On Sep 1 when we had that Blue Moon I decided to take her to the beach that nite. She was so happy. I took her to the arcade, got her a slice of pizza and we joined the crowd at the shell to see a band playing. She slept on the way back home and then when I adjusted her car seat back about 1 inch she got very angry with me and refused to get out of the car and she needed to be taken out by my other sis and mom.

Now, she's in a nsg home sedated barely moving or talking. It's great that u have all that support for all the treatments that is being done for your sis. If I was in her place I would want the same.

Report post

kellyssister,
My sis had shunt implanted in Boston last week and has improved. She is no longer having labored breathing; talking and has become more physical. Her Haldol has also been reduced. She will start her 1st avastin on the 27th. Looks like we're going to have an enjoyable Christmas.

I hope things are going alright for Kelly and your family.

Report post

Hi Jenny
I am the caregiver for my dear frien who was diagnosed with GBM 4 in June 2012. After 6 wks of radiation, one round of Temodar proved unsuccessful, they put her on Avastin. That finally seems to be helping. They recently added carboplatin to her regime. But we heard about DCA and are very curious. We are on CA and would love to learn more about how you were able to get it prescribed in the states.
Thank you! All the best!!
s

Report post

Hello Copychik,

I hope you had a very Merry Christmas! It is going to be a fabulous New Year filled with many possibilities!

My sister has been doing very well on the Avastin, which is great, but also worries me, as there is a shelf life to the treatment. She gets her 4th treatment tomorrow and the MRI in 2 weeks to see if there is any change in her brain. She is very cognizant and seems to be about 65% back to her old mind. The physical symptoms are still present and she is not full strength and tired, but her mind is sharper, only misfiring a few times with overload. That being said, it was a great holiday and we feel very blessed to have her here with us.

She is still on DCA and a "modified" Atkins Diet, as the RKD offered less choices and the results seem to be the same with Atkins. We have been able to modify almost every recipe to suit the ratios, even pizza and birthday cake, as she turned 42 years young last week!

The Oncl is at Baylor Hospital in Dallas. I would be happy to give you the contact info. He seemed rather pleased at her last check up, as her progress has made a 90 degree turn. She could not even look at him before and respond and now she is speaking clearly processed thoughts and able to do strength tests. He believes we could take her off the Modified Atkins diet with the DCA, but to us, will are willing to prepare the special food as long as she will eat it. What could it hurt? Also he plans on reducing the steroid in half as the Avastin treatment continues. She is now on 8 mg/day, down from 12. She has had only 3 very minor seizures in the last few weeks.

The DCA script is written by her Oncl and compounded with a local Pharmacist here in the North Texas area. I believe it comes from a supplier in Houston in a powder bulk form and the pharmacist puts the correct dosage together. She is taking 260 mg twice a day.

I hope this helps and please let me know if I answered your questions.

Have a blessed and Happy New Year!

Report post

My husband has started DCA protocol as outlined by Medicor Cancer Centre in Toronto Canada. Just been on it for about 5 days. He had surgery for recurrence dec17th. Will start Avastin 4 weeks from surgery. Trying to remain hopeful, however it seems like the beginning of the end.
Bernadette

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ABTA

Together with your help, the American Brain Tumor Association will fund more research and reach more people, with the shared goal of improving, extending and ultimately saving lives. With your gift, those coping with a brain tumor diagnosis will know -- more than ever -- that they are not alone.

Donate to the American Brain Tumor Association

Discussion topics

More from ABTA

Community leaders