One patient with glioblastoma still alive nine years later
by rosegamel on Sun Jun 19, 2011 11:35 PM
thank you from the bottom of my heart for all the caring responses I received yesterday. I woke up today feeling so much better. I guess we all have our good days and bad days. Yesterday was a bad day. Today is a good day. You people, all of you, whether we speak or not, gives me strength. We are all fighters. I will never give up. Today is a good day. David has been asleep since i woke up at 330 but thats ok. I will be doing another night shift tonight. My work has given me full time instead of part time so that will help our financial situation quite a bit. I look at him laying in his lazy boy (fully reclined of course) and i am just at peace with how comfortable he looks. He sleeps a lot but doesnt get much rest. Does that make sense? All i know is how much I love him and I will never give up.
On that note. I was reading posts all night last night at work. I am thankful that most of my pts slept last night so I was able to do that..lol. I found a lot of posts about unhealing incisions, nausea, etc. I would just like to take the opportunity to tell some of you what heped my husband.
First off, I researched a lot about curcumin. I started giving david this about a week before radiation started. There have been postitive results on it's affect on tumors. It is a long complicated description but in a nutshell it is an anti-tumor, anti-inflammatory, anti-oxidant..etc. In addition to this, I had read among many other cancer survivors that it also helped decrease the side effects of chemo and radiation. Cha ching...thats all i needed to hear.
Next is astragalus. I have my mother-in-law to thank for this one. It is also an anti-oxidant but in addition to that, it helps protect the body and strengthen the immune system. It also has anti-bacterial and anti-inflammatory properties. Here's my thinking, if it cant hurt him and it may help him, then WHY NOT!!? Astragalus was another herb that I read helps decrease side effects of chemo/radiation.
Lastly, there is vit. d-3. Ok this is a big one for me out of personal experience. Most of my pts that are on my unit are on 10-20,000 units of this per day. I work on a medically complex floor. My pts have non-healing wounds, cancer, fistulas, you name it. First and foremost, vit D3 supports COGNITIVE FUNCTION AND BRAIN HEALTH (woohoo). It supports the immune system, aids in healing and general well-being. The dr's on my unit are obsessed with it. After a study was completed about a year and a half ago, it proved that giving pts with non-healing wounds 20,000 units of cholecalciferol (vit D3) per day, it improved their healing time and overall results by 65%
Ok thats the information I wanted to share. I am in no way advertising these or do I sell them I am only telling you what I think has helped my husband significantly through chemo and radiation. Not one day did he experience any side effects from the chemo. As far as the radiation goes, he did extremely well during the whole process. The biggest problem we are having now (2 weeks out of radiation) is fatigue. That has been the hardest part for me to see because my husband was so active before. I am currently looking into high doses of vit. c as an alternative as well. We havent started this yet, but I continue to do the research and thankfully I have a lot of Dr's that I have worked with for many years that give me valuable insight.
I cant say for sure that this is going to CURE my husbands cancer, but, if iI can make this process easier on him (and me) then Im all for it. The way I look at it is this. We all fight off cancer EVERYDAY. We are exposed constantly to carcinogens, but normal, healthy people naturally fight it off. So, why is it that are loved ones are getting it? Are their immune systems weak at the time the cancer attacks? Just a thought. I am constantly trying to figure out why my husband got this cancer. Maybe it is just a part of life, but I have to believe in something bigger than that. Sorta, the "there's a reason for everything" theory.
Sorry for the long post. Just wanted to share this with anyone who is interested. Again, I am so thankful to find a place to vent, find hope and strength, and share experiences. Til next post, best wishes to all. BTW-CANCER SUCKS!! Emily
by KrisInk on Wed Jun 22, 2011 02:28 AM
Glad you are having a better day. Today is a day I just want to scream at this GBM and kick it out of the universe...
There are a number of other supplements that may be helpful, including IP-6 with Inositol, Boswellia, Selenium, PSK, etc. R-Plus Curcumin (Geronova Research) seems to be excellent quality. For a while, my dad used Zyflamend, which has all kinds of neat herbs in it, but not at very high quantities of any one helpful herb.
You may want to read about a woman who has been coping with GBM for quite some time, along with her approach. Her story is on her website:http://www.cherylbroyles-gbm.com/ By the way, have you read, "Anti-Cancer: A New Way of Life" by David Schervan? Ben Williams, PhD and GBM survivor, has some wonderful information onwww.virtualtrials.com . Hope these are of help to you in your battle...
by vwxyz on Wed Jun 22, 2011 02:02 PM
I have a question, Emily. How much of these 3 things does your husband take each day? I have recently put my son on vitamin D3 once/day along with the other necessary pills he needs to take, plus B12. He cannot swallow a regular sized multi-vitamin and the chewable has too much sugar. He refuses to take it. I am looking into finding a much smaller round vitamin pill for him to swallow. He is an adult, over 21, but has a narrow esophagus. Thankyou for your input and help. Jen
by rosegamel on Wed Jun 22, 2011 07:30 PM
I have read up on some of those that you mentioned...particularly the selenium. I was able to find the curcumin that is bio-available at thevitaminshoppe.com . Good stuff I think. I just ordered anti-cancer: a new way of life through Amazon. Cant wait to read that one. I am going to check out your other links too. I appreciate the information. We had our first post-radiation round 1 of chemo MRI today. A little nervous but he looks so good I am trying not to worry. I will just be glad when all the fatigue goes away. I am going to ask our oncologist on Friday about the high dose vit. c. Some say you need to have it IV for it to be effective. So Im going to see what he says about it. If it could help and it wont hurt him Im all over it..lol. Ill keep you posted on what he says about it. Emily
by rosegamel on Wed Jun 22, 2011 07:37 PM
VWXYZ--I sent you a private message in answer to your questions. Let me know if you do not get it.
by vivienjun on Sun Feb 03, 2013 03:31 AM
Hi Rose: thanks for sharing your wounderful story. My dad was diagnosed in last Dec as GBM. After the surgey, he is now on 6 weeks radiation plus temodar cycle. I have been doing a lot research lately and read PhD Ben Williams findings. I have bought all the supplements but I am nervous for my dad to start taking them espeically on the Anti-oxidents. There seems to be a lot of debate on using of the AO for cancer pateint. But I am sure you have seen enough at work and additing it together with chemo is working very well right? I guess I just like to hear from people that the benfits is much greater than the potential risk.... please help.... stay strong everyone!
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