Loading...

KrisInk's Message Board Messages

Loading...
Showing 1 - 10 of 82

Page 1 of 9

I have been in a place similar to where you are now.  My dad was diagnosed with GBM in May 2010.  We spent countless hours researching options, alternatives, etc.  There is so much to know; yet, science clearly does not have the answer to GBM.  Some things were did early on that may be of help:

- Read and print the information published by Ben Williams - it is initially confusing, but is the most helpful stuff on the topic:http://www.virtualtrials.com/williams.cfm

- Connect with Jeanne Wallace, nutritionist based in UT, who specializes in GBM - she used to have great articles in the presentations area of her website:http://www.nutritional-solutions.net/

- See supplements and diet changes made by Cheryl Broyles:http://www.cherylbroyles-gbm.com/supplements

- Vitamin D3 - minimum of 5,000 IU per day; Turmeric - daily dose; many other supplements and dietary changes to give him the best quality of life possible

-  Immediately obtain and read these books -Anti-Cancer: A New Way of Life, by Dr. David Servan-Schreiber, andCancer-Fighting Kitchen, by Rebecca Katz.  Both changed my life and my dad's...at least for a while.  Since you'll want to refer to these books constantly, a hard copy is really useful (especially of the cookbook).

  - Another great book -When Life Becomes Precious(not sure of the author)

- Make sure someone in your family understands and works with the insurance company...the Western medical treatments and care your dad will need are wildly expensive (and extend life by weeks or months if you are lucky)

- Take tons of pictures.  Videotape your dad, how he moves, his laugh, his voice, his wisdom to you.  Do it now while he is "well"

- Take care of you as best as possible and know that there are not going to be people who really understand, but there are many who care...

- Be kind to yourself in this process...

- Pray.  Ask others to pray. 

I sincerely hope something above helps.  So, so sorry that your family is going through this...

-Kristin-

Margaret,

I am terribly sorry for your loss, as well as for the loss your family endured during this horrible battle.  As I write this, I am witnessing my dad in his final days.  He was moved to an in-patient hospice facility last evening, which (I feel a bit guilty admitting) has been a bit of a relief for us.  We, too, pray that he finds peace in this time. 

The battle with GBM began May 27, 2010.  He has lived longer than anyone projected.  I am so proud of him and the amazing person he is.  We have learned so much through this journey...not necessarily how we wanted to learn it, but this has resulted in profound learning and growth for the rest of us. I only wish we had more time... 

I pray that your family finds a way to cope with your huge loss...I can only imagine what you all are going through.  Hang in there as best you can, lean on others, and ask for help...perhaps this is the advice I should be taking (instead of giving...lol).

Prayers for you and your family,

Kristin

Not sure if you've heard this or not, but you may want to look into taking Celebrex with the radiation, as well as large doses of vitamin C.  Both are supposed to be helpful.  You might want to talk with the radiation oncologist about this...or the medical or neuor oncologist...

There is a great book called, "The Cancer-Fighting Kitchen" by Rebecca Katz that I wish we'd had when my dad was going through radiation and chemo. 

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...

Hi Roxy,

My dad is still here...barely.  Will be following in Hollis's path within weeks, they tell us. 

Sending love to you and hoping you are coping as best as you can.

Kris

Have you tried to contact the drug company for help?  Just looked at the link for Pfizer and found several options...http://www.pfizerhelpfulanswers.com/pages/Misc/Default.aspx. You might also talk with your doctor's office to see if they can direct you to other assistance programs.  Good luck.

 

My dad took XL 765 through a trial in Boston (combined with temodar).  The trial involved a lot of appointments (many of which were not paid for by the study). The drug was not too taxing on him for the first couple of months.  After a couple of months, though, his platelets got very, very low (and he even had to get a transfusion, as the platelets did not re-bound on their own).  Ultimately, the drug did nothing for my dad...his tumor grew significantly and swelling occurred in the two months between MRIs.  I understand that others may have had better results, but it wasn't a helpful trial for my dad... 

I am so, so sorry for your loss...can't imagine what you must be going through with children.  How quickly this tumor took her...so hard to fathom.  My deepest sympathies to you and your family on this most difficult loss and time of your lives. 

Kris

 

 

My heart breaks for you, Megan.  I am so, so sorry for your loss.  We are told that my dad will pass as the result of GBM in 8-12 weeks...I have no idea how I will live without him.  The last few days, I've been thinking about how few people truly know us and love us our whole lives...no one, in fact, but our parents...they are our greatest cheerleaders, the examples of how to live (or not), and guide us in the choices we make in life.  Please know that there are others here who understand and care...

Kris

Thanks for posting this info.  I also would be thrilled to learn more.  If it truly takes 3 months to work, it may not be useful for my dad...just trying to find "any port in a storm"...

 

Showing 1 - 10 of 82

Page 1 of 9

Loading...

About KrisInk

Caregiver
Brain Cancer
Alternative Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diet, Emotional Support, Insurance, Lifestyle, Massage Therapy, Naturopathic Medicine, Recipes, Side Effects, Supplements

My dad was diagnosed with GBM following a craniotomy 5/28/10. He passed 10/31/11.

He initially underwent 6 wks radiation + low-dose Temodar. Took higher dose Temodar thereafter, but MGMT gene was activated and he was over the age of 70 (and the temodar alone was not effective). He entered into a clinical trial for Temodar+XL-765, but failed 12/2010 - due to significant tumor re-growth and swelling. He changed his diet dramatically, added various supplements, maintained exercise regimen, etc. My dad was treating at Cape Cod Hospital (not a good experience!) and Dana Farber Cancer Institute in Boston, MA. On 05/11/2011, my dad was told the tumor was growing significantly again - Avastin seemed to have failed. Tumor spreading to occipital lobe and brain stem, and the doctors estimated that he had 8-12 weeks left. He continued with Avastin for 3 more treatments, until 7/6/2011. We watched him deteriorate before our eyes. In Sept 2011, he began to tell us that he thought each day would be his last. Due to recurrent falls and inability to get out of bed without assist, he was moved to an in-patient hospice facility 10/07/2011. He passed away 10/30/2011 at 11:11 AM, 11 years to the day that my brother passed. Our grief is beyond words...we know we did all we could, that he did all he could, that GBM desperately needs to be cured. Love and miss you, Dad...

We care about your feedback. Let us know how we can improve your CancerCompass experience.