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DCA Discussion Forum
nitka
Member since Dec-5-08
8 posts |
Dec-10-08, 01:33 AM (PST) |
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"Glioblastoma Multiforme - my Dad's story"
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Hi everyone, I would like to introduce myself to you all. My name is Anita and I would like to share with you my Dad's story. My reason for writing is three fold: I hope writing will help me deal with my Dad's illness and whatever will come in the future in terms of his health, I hope that my Dad's story will help others, and also hope that by sharing this story, maybe someone will have suggestions or is going through similar experience and we can help each other by exchanging ideas. So let's start. I live in Canada, while my Dad lives in Poland. In March of this year (2008) my Dad was diagnosed with Glioblastoma Multiforme. He went into his doctor's office with symptoms such as disfunction of his left limbs and headaches, which he never experienced previously. He saw his doctor on Friday and on Monday he was on operating table to remove his tumour (one large, larger then a fist tumour located on the right side of his brain). The tumour was removed best to the surgeon's ability and my Dad was ordered intensive radiation. Three cycles, each cycle lasting five days. He had his radiation in May, June and July. After the first radiation the doctor's were amazed that he is doing so well. He is strong physically and mentally, so that did not come as a surprise. He is a fighter. His first, after the treatment, MRI in September showed renewal of his brain tumour with three additional, smaller tumours throughout his brain. Other then headaches he has not experience any other effects of his illness, and has been taking no medication, no anti-depressants, nor pain killers!!! Upon receiving the results of MRI and upon my convincing, he decided to try DCA therapy in Canada. He started taking DCA prescribed by Dr.Khan from Medicor in Toronto, on October 29, 2008. His regime was: Week #1:
DCA three times a day (25mg/kg/day)
Supplements R+SR alpha lipoic acid 150mg three times a day
Supplement benfotiamine 80mg twice a day to reduce DCA side effects Week #2:
DCA twice a day (13mg/kg/day)
Supplements R+SR alpha lipoic acid 150mg three times a day
Supplement benfotiamine 80mg twice a day to reduce DCA side effects Week #3:
No DCA and no supplements My Dad was on this cycle for one month, upon which it was time for him to go back to Poland. While taking DCA my Dad experience headaches and nightmares, which increased as the therapy continued. During the week with no medication he was a new born person. No headaches or any other side effects, and great mood, finally smiling!!!  Two days before his return to Poland, things started to spirow down. He was having horrible nightmares borederline with hallucinations, his motion was slowed, his personality changed (always punctual person, now having a hard time getting him to the airport on time) and of course headches and confusion. This continued for a week, and escallating to the point where on his day 6 after stopping DCA he locked the doors, windows and would not speak with anyone. The next day he was better, and today he is in a hospital. I was speaking with him over the phone and he said that he will end his life because the pain is so unbereable and the pills don't work, while the doctors are telling him to pray as there is no hope for the cure. After spending the whole day on the phone, I know that my Dad is in a hospital with extensive brain swelling!!! They have done CT and will compare it tomorrow with MRI which he had in September. Tomorrow, they will also decide what to do with the swelling. The swelling is around the original tumour which was removed but has reoccurred. The swelling even spread toward left side and back of the brain. Hopefully we’ll find out tomorrow what caused the swelling. Could DCA cause it? I will keep you all posted tomorrow Anita
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Elizabeth1
Member since Oct-2-08
188 posts |
Dec-11-08, 05:36 AM (PST) |
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2. "RE: Glioblastoma Multiforme - my Dad's story"
In response to message #0
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Anita, Sorry to hear about your father. It is so much harder that he is far away from you as well.... Do I understand that he ONLY took the DCA while in Canada, for the one month??? Regards
Elizabeth
Lets fight together, help each other. I truely believe that we have to be our own health advocat.
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nitka
Member since Dec-5-08
8 posts |
Dec-30-08, 10:53 PM (PST) |
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3. "RE: Glioblastoma Multiforme - my Dad's story"
In response to message #2
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Oh no....I just had a whole page of text and something happened and all is gone....  Computers!!!!Anyways, I was hoping to write more often but have no time.... I am currently in Poland. After not being able to understand what my Dad was saying to me over the phone three weeks ago, I decided to go to POland to be with him right away. Hence, 21 hours of travel with two little kids, and I am here. I took my Dad home two days before HChristmas. Doctors disqualified him from any further treatment due to the extend of the brain tumour. Apparently based on CT scan they are not able to recognize what is brain tumour and what is brain tissue... (( He was taken to the hospital three weeks ago after I spoke with a doctor that my dad has extreme headaches and is seriously not well!!! As I found out he had brain heniation (deadly side effect of very high intracranial pressure that occurs when the brain shifts across structures within the skull). Few more hours and that would be it However, we are still at the no hope point. I am currently with my one year old at my Dad's place taking care of him. He is not able to dress himself and has difficulties walking...he is dragging his feet and looses hie balance It is shocking tome how quickly his health is declining. It is articularly shocking because he used to be the person the have things done quickly and efficiently...not he is in slow motion, half the time loosing touch with reality. He himself says that his body is still on this earth but his mind is in another world. It is difficult to me to see him like this and not being able to help him much!!! It is hard on me physically and psychologically....especially since I know that the end may come anytime...I am with him all night and most of the day but I am scared...I am here (at my Dad's place) with my one year (my three year old is with my Mom (she lives in Canada, but is in Poland with me to help me). They commute to us daily...the distance and the situation is also hard on my three year old Right now all is dark while I write, and my Dad makes these strange noises...kind of like hiccups...well they are hiccups, but as I was told by the doctors, they are not caused by conventional "thigs" such as eating too fast, or being cold...I was told they are cause by the tumour As for my Dad....I can't tell how aware he is...he seems to be alert at times and very "unpresent" at others. I still have not told him that the doctor who showed willingness in helping him said yesterday that at this point nothing can be done....I usually do find words, but not now...I sit at the side of his bad speachless...do I aks him what are his last wishes....does it matter to him anymore?!?! Life is hard...but I can imagine it could be harder...he is a 57 year old man, who had his share of enjoyment...out there in the world are many sick kids who cannot be hlped...well, I better go to slee and kiss my baby...he smiles so beautifully I apologise for writing so haotically and also apologise for any grammatical or spelling mistakes...no time to fix them... |
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nitka
Member since Dec-5-08
8 posts |
Dec-30-08, 10:56 PM (PST) |
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4. "RE: Glioblastoma Multiforme - my Dad's story"
In response to message #3
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Well, well well...I found the text which I thought I lost...here it is for what is worth... I was hoping to write more often, but things turned for the worse and I am very preoccupied.... First to answer Elizabeth, yes, my Dad was taking DCA only for a month while in Canada. He still has almost 3 months worth of DCA (unopened, from Medicor Centre) but will not use it due to the side effects (horrible nightmares/hallucinations). Sooooo....I am in Poland at the moment. Two weeks ago when I was not able to understand what my Dad was saying over the phone (hi speach was temporarly peralized) I decided to travel with my two little sons to Poland (only 21 hrs travel) My Dada was stable and after almost a week I took my Dad out of the hospital for Christmas. He is now at hi hime an dI am staying with him and my one year old. My three year old is staying with my Mom (she lives in Canada as well, but is in Poland to help me with kids and my Dad). My Mom and my three year old are staying at my aunt's house due to limited space at my Dad's apartment...so that adds an extra stressor. But going back to my Dad. I am shocked how the illness overpowered him. He was THE person to take care of everything, and had it all done well...but now he needs help to even dress him self. Only three weeks ago he was walking and taking shower by himself. Now he needs help with everything. He can still eat, but walking is very hard for him...he drags his feet and looses his balance. He stays in bad all day and night and says that he is still on this earht in body but his spirit and mind is in another world. He has difficulties sleeping and it is difficult for him to grasp the time. Today he got up at 5am and asked me if I will eat breakfast. I got up and made breakfast for him, while praying that my one year old will sleep at least until 6am  It is very hard on my to see him in such a state. I am trying not to think about it and rarely cry...but I know that one day I will realize what is happeneing, or what happened and I will fall apart. As for my Dad, I don't know how aware he is. Soemtimes he seems very unawre, and at other times he appears to be very alert. I am scared becauze on some level I know that my Dad can pas away any minute...that's what the doctotr's at the hospital told me.... |
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Elizabeth1
Member since Oct-2-08
188 posts |
Dec-30-08, 11:22 PM (PST) |
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5. "RE: Glioblastoma Multiforme - my Dad's story"
In response to message #4
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Dear Nitka. I am sorry to hear this news of your father. We have asked, but have NOT heard from you. ARE YOU GIVING your dad the DCA????? If NOT why NOT? Best Wishes
Elizabeth |
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nitka
Member since Dec-5-08
8 posts |
Feb-21-09, 04:43 AM (PST) |
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9. "RE: Glioblastoma Multiforme - my Dad's story"
In response to message #8
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I am sad to share with you who are reading this post that on February 1, 2009 my Dad has passed away. About a week before his passing he began to have difficulties swallowing food and liquids. He was put on IV (glucose 5%) and all the medication (anti-swelling, pain and calming medication) was given subcutaneously. In the last week he was also loosing his ability to speak. However, on the morning when I was leaving him to go to the hospital to see my older son (he was hospitalized due to pneumonia) my Dad asked me when I will be back. I said "Dad I need to give you your medication in four hours, so I will be back in max. four hours". I came back in four hours and my Dad was waiting for me but already passing away. He had difficulties breathing so upon speaking with people from palliative clinic I put my Dad into sitting position and tried to gently hit him on the back to help him breath. He was trying sooo hard to breath but momentarily was stopped breathing. After 10 minutes of no improvement I phoned the palliative clinic again and they said that it seems that my Dad is passing away. I hang up and said to my Dad that I will be telling my kids about him and that I love him...my grandma and thus his Mom was with us and my younger son (14 month old). My Dad took one more breath and slipped away (((( He had such a strong will to live and fight, and was aware of everything until the very end, but I guess there are fights that one cannot win...I am in peace that I was able to help him in the last two months of his time with us, and that he was not dying alone ( I truly believe he was waiting for me) but the sadness is still here and I cannot believe that the smile he had and the warmth he was giving us is gone forever I do miss him dearly!!!!! But he is in peace now....no pain, no worries....when I saw him the last time before he was cremated, he had a huge smile on his face (interestingly the smile was present only on the side that was not paralyzed). I love hime and will miss him forever..... (((
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candydog
Member since May-6-08
21 posts |
Feb-28-09, 11:56 AM (PST) |
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12. "RE: Glioblastoma Multiforme - my Dad's story"
In response to message #11
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I to have travelled that road with GBM and it is very cruel. You are a wonderful daughter to do so much for your father and even to travel to Poland to be there with him. You have shown a great love. It is a sad road and ends in a terrible way but take comfort in the help you gave and that he knows how you fought for him. My daughter had difficulty with it and did not not want to see the person she loved who was strong and always there for her, not even be able to say hello to her. And he suffered that loss of her. She saw him the day before he died and is glad she made the effort. Afterwards there are regrets and recrimminations not for what you did but for what you didn't. To everyone out there who is going through the same be there for them and comfort them just by letting them know you care and love them. That is all they want. And if you fight for their life that is the ultimate gift. |
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