Hi everyone,
it's been a while since I have posted anything. The worst has happened and my Dad passed away in September (55 years old). We spent his last three months on hospice care and watching him die was the hardest part. I miss him so much and the only positive thought I can come up with is that he doesn't have to suffer any longer...
My Dad was diagnosed with an inoperable glioblastoma (corpus callosum) in December 2015. He was told he had three months to live but he proofed all his doctors wrong!
An important part of his cocktail was methadone and we're sure that it played an important role in keeping him alive for almost three years. He had switched Temodar to the metronomic scheme, so we have many unopened boxes at home. We would feel very bad if we had to throw them away, so I'd love to send them to anyone who really needs them - just let me know!
Thank you so much for this blog, Stephen. It has been extremely helpful.
And I wish everyone all the best, keep fighting!!!
Take care
Steffi
Dear Steffi,
ReplyDeleteI am so sorry for your loss, but I am also really shocked... how unbelievable was the result. My dad also had an inoperable tumor and I would be really happy if he could make it even a year without accessing TTF. I am sure you have done a great job and wish you the best...
damn! it is really hard....
My sincere condolences Steffi. I'm sure it was an extremely hard thing for you to watch. Yet you were also able to keep him alive for several additional years using unconventional (but science-based) therapies. This is the whole reason this blog exists, and your example with your father will maybe give courage to other people who are starting out on their GBM journey to try something that might extend their life beyond what the doctors expect.
ReplyDeleteThanks on behalf of everyone here for your encouragement Steffi. Take care of yourself
Regarding your kind offer, may I know which dosage are they. and if it is possible, which city you are living? if I have friends there who can take them from you and transfer the money to you, I'll be happy to have them.
ReplyDeletehere is my email: sahell118@yahoo.com
I'm very sorry for your loss, Steffi. I guess the loss of close relatives, partners or friends is one of the worst things one has to go through in life. I am impressed by the success your dad achieved with a proactive battle against this terrible disease, and I am sure in spite of the sad ending, it was a fight worth fighting. Wish you and your family lots of strength.
ReplyDeleteBest wishes,
John
It sounds like with your support, your father fought the good fight, Steffi. It's great that you got more time with him than you expected and it is so very thoughtful of you to share his unused medication. Was it Methadone? If so, we may be interested. My email is mpstix@gmail.com.
ReplyDeleteStay strong and be well,
Margaret
Thank you very much for your kind words. It still feels like a never-ending nightmare because we tried so hard to save him... It's just not fair... At least my Dad's couragous battle gave hope to other people as he survived his diagnosis for so much longer than almost all other inoperable glioblastomas. The MRI even showed some shrinkage in 2017.
ReplyDeleteI'd like to let you know what my Dad did to fight his tumor. He never stopped taking Temodar but added methadone and also Optune TTF. He ate loads of home-grown broccoli sprouts, he took Vitamin D, Omega 3, Coriolus versicolor. My Dad always had raspberries with curd cheese (quark) and flaxseed oil for breakfast; in general he ate lots of veggies and fish but he also loved his ice-cream and cake :) He tried to exercise as much as possible, we often went for a walk outside - and besides everything he took and did, I truly believe that our love for my Dad played a vital role in him surviving for so long.
The medication we have left is Temodar (temozolomide, here it is called Temodal). We still have 11 boxes of 100mg and 3 boxes of 20mg at home. There is no methadone left. As we live in Northern Germany I don't mind sending it via mail. I don't want any money, we just don't want to throw it away if it can still help other people.
All the best to all of you!
Dear Steffi,
ReplyDeletemy sincere condolences to you and to your family. My father-in-law was also diagnosed with inoperable gbm last month at the age of 54, which turned our lives upside down as well. We traveled to Germany to look for treatment options, and he is now going through radiotherapy with Temodal at a clinic in Frankfurt. Since we pay for the whole treatment ourselves, any help with medication would be very much appreciated.
But most importantly, I was wondering whether you would be open for a skype call with me? I can imagine that you would like to get rid of all the unpleasant memories related to treatment, but I have so many questions and your experience would be so valuable to us.. Especially because you come from Germany, I am very interested in how doctors allowed you to use any supplements, as in our case they oppose any extra medication and dietary changes, that worries us very much
Looking forward to your reply, you can also email me at iulia.grigoriev@gmail.com
Regards,
Iulia
Dear Steffi,
ReplyDeleteThat would be wonderful…especially since finding good quality drugs and the right dosages are quite impossible to find here. So I think the dosage you have, works perfect for us. We still have time for the next round, so whenever you feel you are in the mode, please contact me at Sahell118@yahoo.com and within few days, I will find some friends in Germany to take care of the transference.
I hope your fighting spirit and your admiration for life help you to somehow tolerate this heartbreaking event.
I cannot believe it! I find someone in Stuttgart who will come to Iran within ten days. If you think it works, let me know, if not I will find others.
ReplyDeleteI'll be waiting for your email.
Warm hug
Sorry for your loss Steffi.
ReplyDeleteSahel, just to clarify again - temozolomide/Temodar/TMZ is a chemotherapy drug, so be careful. I strongly suggest you talk with your doctors before using it. TMZ is not covered by insurance in your country?
Yes, in all probability the doctors in Iran are planning to prescribe him standard TMZ (temozolomide) chemo about a month after he completes radiation. This is the standard treatment for GBM around the world.
DeleteYes, thanks for your concern :) my father is finishing his radio/tmz sessions and as our ON said next plan would be the TMZ cycle. And it is partially covered by the insurance but the thing is that for instance I could not find a good quality 20mg TMZ so we had to use 140mg and 100 mg every other day.
DeleteAlso regarding the scary situation here, I am really afraid that things happen and then we force to switch to Iranian made TMZ! So having those drugs would be a relief.