Why I cannot find any case like My mom with GBM in Compass?

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Why I cannot find any case like My mom with GBM in Compass?

by amj29 on Tue Nov 03, 2015 07:19 AM

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My mom was diagnosed with GBM about 3 months ago. I was searching from the minute I could say the name of this monster, but I never faced with any case which could not talk and say a word because of their tumor. I am looking for a person who his/her tumor grows during their recovery from the surgery. I want to know their experiences and helpful advices. How long did they last? Was speech therapy helpful? And I am actually looking for some miracles, since it seems that all the miracles belong to a person with one tumor with almost complete resection and good performances. She is my world.

You can read in the fallowing my Mom story.

My mom (56 Y) was diagnosed with brain tumor (53*43*37mm) in her right frontal lobe about 3 months ago. We went to ER because of her blurred speech and lack of attention and narcolepsy that she was suffering from about 3 days. She went under surgery 2 days after DX. Her surgeon said that he was able to remove 80% of tumor. She was in coma for 17 days and everybody began to whisper about her never getting up. But she came out of coma. She started to walk the next day, and everything seemed good, except that she was not talking. Her surgeon said that she will talk in about 2 or 3 months. Her 1st MRI after surgery (4 weeks after surgery) showed us a second tumor in her left frontal lobe (21*18*14mm) and about 50% of the 1sttumor. It felt horrible when we found out about the second tumor. It was hard to handle one, and now we faced two large tumors and her waking up more sound like miracle because her brain was under so much pressure to load again.

Right now she cannot take care of herself, she cannot talk, and although her swallowing is good but she cannot feed herself because she cannot find her mouth with spoon. She cannot read but sometimes she can write some words like our names.

There are so many good things to keep us hoping such as she recognizes us and she laughs whenever we say or do something funny. She walks, and does yoga. And she insists on doing her own works.

She finished her 30 radiotherapy sessions and 42 days Temodal without any side effects (no N/V, loss of appetite, scalp burn, weakness, insomnia, etc.) and that was such a relief in such a devastating situation.

Since she was not very oriented before surgery, we do not know what she knows and realizes, she seems to be on and off. She did cry sometimes at the beginning but that stopped one month ago. She is all alone in her world and the worst part of it is that we do not know if there is something she wanted to do if she knew about her situation.

Right now my dad does all of her works, my sister is staying with her to take care of her nutrition and make sure that she gets whatever her body needs. And since I am a pharmacist, I am taking care of her activities, Docs and Meds and looking for all the options around the world to keep her longer (which every where is shutting us down). And my aunt and mom’s friends are with us every day to take care of her and us.

Please if you familiar with this situation answer me. 

RE: Why I cannot find any case like My mom with GBM in Compass?

by Qdmazo on Thu Nov 05, 2015 09:28 PM

Quote | Reply

On Nov 03, 2015 7:19 AM amj29 wrote:

My mom was diagnosed with GBM about 3 months ago. I was searching from the minute I could say the name of this monster, but I never faced with any case which could not talk and say a word because of their tumor. I am looking for a person who his/her tumor grows during their recovery from the surgery. I want to know their experiences and helpful advices. How long did they last? Was speech therapy helpful? And I am actually looking for some miracles, since it seems that all the miracles belong to a person with one tumor with almost complete resection and good performances. She is my world.

You can read in the fallowing my Mom story.

My mom (56 Y) was diagnosed with brain tumor (53*43*37mm) in her right frontal lobe about 3 months ago. We went to ER because of her blurred speech and lack of attention and narcolepsy that she was suffering from about 3 days. She went under surgery 2 days after DX. Her surgeon said that he was able to remove 80% of tumor. She was in coma for 17 days and everybody began to whisper about her never getting up. But she came out of coma. She started to walk the next day, and everything seemed good, except that she was not talking. Her surgeon said that she will talk in about 2 or 3 months. Her 1st MRI after surgery (4 weeks after surgery) showed us a second tumor in her left frontal lobe (21*18*14mm) and about 50% of the 1sttumor. It felt horrible when we found out about the second tumor. It was hard to handle one, and now we faced two large tumors and her waking up more sound like miracle because her brain was under so much pressure to load again.

Right now she cannot take care of herself, she cannot talk, and although her swallowing is good but she cannot feed herself because she cannot find her mouth with spoon. She cannot read but sometimes she can write some words like our names.

There are so many good things to keep us hoping such as she recognizes us and she laughs whenever we say or do something funny. She walks, and does yoga. And she insists on doing her own works.

She finished her 30 radiotherapy sessions and 42 days Temodal without any side effects (no N/V, loss of appetite, scalp burn, weakness, insomnia, etc.) and that was such a relief in such a devastating situation.

Since she was not very oriented before surgery, we do not know what she knows and realizes, she seems to be on and off. She did cry sometimes at the beginning but that stopped one month ago. She is all alone in her world and the worst part of it is that we do not know if there is something she wanted to do if she knew about her situation.

Right now my dad does all of her works, my sister is staying with her to take care of her nutrition and make sure that she gets whatever her body needs. And since I am a pharmacist, I am taking care of her activities, Docs and Meds and looking for all the options around the world to keep her longer (which every where is shutting us down). And my aunt and mom’s friends are with us every day to take care of her and us.

Please if you familiar with this situation answer me. 

Hi, I just signed up to this site last saturday. My sister is scheduled for brain sugery this Monday. I am in the midst of trying to find info on this nasty GB. Her tumour is top left of head.

I am researching claims that medical use of marajiwana can shrink GB tumours.

RE: Why I cannot find any case like My mom with GBM in Compass?

by amj29 on Sun Nov 08, 2015 04:23 AM

Quote | Reply

Dear Qdmazo

I am so sorry to here about your sister. This is a disease that I dont even want for my enemies. you can find the answer to your question somewhere in the massage board. I really did not come in to conclusion about marijuana, there are so many contraversion about its usage.

If I had the information that I have now, I would try  these;

1. try to get in vaccine trial since they sound one of the most promising approaches under-development (my mom was not eligible). and you sould ask about them from your doctors before surgery because they will need amount of the tumor for producing the vaccine.

2. Try to find out about Valcyte. It seems promisisng. 

3. Please read about Ben Williams and his cocktail and his books and pdf. that really helps.

And try to consider achange in her diet. Alkaline and budwig diet are two things that we are trying for mom. although it is not based on any scientific evidence, but it is really the most available approch with no harm and and it seems to help my mom to go through her radio and chemo without any side effects.

I wish the best for you and your sister. I really Do. And I hope you will have a long and safe journey with your sister.

 

RE: Why I cannot find any case like My mom with GBM in Compass?

by Gaylec on Sun Nov 08, 2015 04:32 PM

Quote | Reply

My husband had the tumor hit is speech area. He could talk, but it was difficult. Therapy really didn't work. Can your mom write? Can she nod yes or no? Even though the speech area was affected, my husband was still able to think and feel emotions. It would frustrate him if people talked about him in front of him.

My husband had successful surgery, followed by 3D radiology surgery (not gamma knife, but extremely targeted radiation treatments) followed by temedor. After 6 years, the cancer outsmarted the temedor, (he was on and off it for awhile - hard on the platelets) and then had Avastin. It worked well, but once that failed we ran out of options. I am glad that we had 7 years to do things like travel, and watch our daughter grow up, and he certainly beat the initial diagnosis of 6 months to 2 years when diagnosed at the age of 53.  Good luck and maybe a therapist can help find was to channel communication.

RE: Why I cannot find any case like My mom with GBM in Compass?

by amj29 on Tue Nov 10, 2015 03:52 AM

Quote | Reply

On Nov 08, 2015 4:32 PM Gaylec wrote:

My husband had the tumor hit is speech area. He could talk, but it was difficult. Therapy really didn't work. Can your mom write? Can she nod yes or no? Even though the speech area was affected, my husband was still able to think and feel emotions. It would frustrate him if people talked about him in front of him.

My husband had successful surgery, followed by 3D radiology surgery (not gamma knife, but extremely targeted radiation treatments) followed by temedor. After 6 years, the cancer outsmarted the temedor, (he was on and off it for awhile - hard on the platelets) and then had Avastin. It worked well, but once that failed we ran out of options. I am glad that we had 7 years to do things like travel, and watch our daughter grow up, and he certainly beat the initial diagnosis of 6 months to 2 years when diagnosed at the age of 53.  Good luck and maybe a therapist can help find was to channel communication.

Dear Gaylec

My Mom cannot read but can write!!!! It sounded so strange to us. When we write her name among 3 other names she cannot recognize it but when we ask her to write her name, she writes it down. She completely understands what is going on around her and she is fully alert. She gets very complicated humors and funny situations and she laughs about them. But she does not answer to our question, we tried everything by asking her to write, blink, and move her head. But she does not cooperate to answer. 

Her neurologist says that we should not expect her so much, because both her right and left are involved with tumor. And we should not push her. They asked us to just deal with her situation until she dies. But we don’t want to just deal with her. We want her to live so we push her to live. 

I just wish that we knew that what she really wants to do. We just go for try and error. The only thing that we are sure, is that she always loved gatherings and spending times with others and that is what we try to do for now. I see her everyday, my sister and my aunt and uncle and her friends all are surrounding her. Although we even doubt she enjoys that. Because we receive no feedback, except in funny situation that she smiles and laughs. It is wonderful, beyond great, that you had 7 years with your husband knowing the worth of life. I am sure that was not just only 7 regular years. ?I wish the best of all for you.

RE: Why I cannot find any case like My mom with GBM in Compass?

by helenb on Tue Nov 10, 2015 04:45 PM

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Hi.  I am so sorry to read this about your mother.

I'm going thru pretty much the same.  My mom under went chemo and radiation treatment in the begining.  after the radiation treatments, it was chemo bi-weekly.  after eight years of chemo the treatments stopped.  the tumor came back and the chemo no longer helped.  My mom is now in hospice.  I thank God everyday that I have her.  I'm her primary care and eldest daughter.  She no longer speaks or care for herself.  Its very hard at times, but She is my parent. Avastin helped her for soooo many years, however, qualifty of life is gone. Giloblastoma stage 4. 

RE: Why I cannot find any case like My mom with GBM in Compass?

by amj29 on Wed Nov 11, 2015 07:23 AM

Quote | Reply

On Nov 10, 2015 4:45 PM helenb wrote:

Hi.  I am so sorry to read this about your mother.

I'm going thru pretty much the same.  My mom under went chemo and radiation treatment in the begining.  after the radiation treatments, it was chemo bi-weekly.  after eight years of chemo the treatments stopped.  the tumor came back and the chemo no longer helped.  My mom is now in hospice.  I thank God everyday that I have her.  I'm her primary care and eldest daughter.  She no longer speaks or care for herself.  Its very hard at times, but She is my parent. Avastin helped her for soooo many years, however, qualifty of life is gone. Giloblastoma stage 4. 

Dear Helenb

I am so sorry to hear about your mom too. It is an awful situation which all of us are involved. Can I ask you if your mom had 2 tumors at the beginning? and what was her beginning chemo rounds (bi weekly chemo)? my mom is on temodal and his doctor refuses to prescribe Avastin unless in the case of refractory. 

Although I am so sad that you are now in this place in your life and I wish the best for your mom. She is lucky to have you. I am also happy for you that you could enjoy being with her for 8 years since her DX. That sounds like a miracle for me. I would love to have that much time with her. 

RE: Why I cannot find any case like My mom with GBM in Compass?

by Qdmazo on Thu Nov 12, 2015 08:53 PM

Quote | Reply

On Nov 08, 2015 4:23 AM amj29 wrote:

Dear Qdmazo

I am so sorry to here about your sister. This is a disease that I dont even want for my enemies. you can find the answer to your question somewhere in the massage board. I really did not come in to conclusion about marijuana, there are so many contraversion about its usage.

If I had the information that I have now, I would try  these;

1. try to get in vaccine trial since they sound one of the most promising approaches under-development (my mom was not eligible). and you sould ask about them from your doctors before surgery because they will need amount of the tumor for producing the vaccine.

2. Try to find out about Valcyte. It seems promisisng. 

3. Please read about Ben Williams and his cocktail and his books and pdf. that really helps.

And try to consider achange in her diet. Alkaline and budwig diet are two things that we are trying for mom. although it is not based on any scientific evidence, but it is really the most available approch with no harm and and it seems to help my mom to go through her radio and chemo without any side effects.

I wish the best for you and your sister. I really Do. And I hope you will have a long and safe journey with your sister.

 

Hi ami29

Thank you for your information.

My sister had the surgery on monday. The GB4 was located on the parietal lobe(top left of lobe) Most of the GB4 was removed and will need radiation to add more time. She may or may not be a candidate for Chemo? She came through the operation very well(miracle in its self) She can speak and does recognise and has a sense of humour but has partial vision only in right eye, left eye ok.

Its too early to determine all deficits at this time but one day at time.

We have started:

epson salt and Baking soda baths(lavender oil drops, helps with alkalinity). Using essential oil rubbed above Kidnies in the adrenaline area to boost immune system.

One big issue is she does not sleep very and probably does not go into rem state.

I could not determine if your mother had the second tumor removed?

RE: Why I cannot find any case like My mom with GBM in Compass?

by amj29 on Fri Nov 13, 2015 06:41 AM

Quote | Reply

On Nov 12, 2015 8:53 PM Qdmazo wrote:

On Nov 08, 2015 4:23 AM amj29 wrote:

Dear Qdmazo

I am so sorry to here about your sister. This is a disease that I dont even want for my enemies. you can find the answer to your question somewhere in the massage board. I really did not come in to conclusion about marijuana, there are so many contraversion about its usage.

If I had the information that I have now, I would try  these;

1. try to get in vaccine trial since they sound one of the most promising approaches under-development (my mom was not eligible). and you sould ask about them from your doctors before surgery because they will need amount of the tumor for producing the vaccine.

2. Try to find out about Valcyte. It seems promisisng. 

3. Please read about Ben Williams and his cocktail and his books and pdf. that really helps.

And try to consider achange in her diet. Alkaline and budwig diet are two things that we are trying for mom. although it is not based on any scientific evidence, but it is really the most available approch with no harm and and it seems to help my mom to go through her radio and chemo without any side effects.

I wish the best for you and your sister. I really Do. And I hope you will have a long and safe journey with your sister.

 

Hi ami29

Thank you for your information.

My sister had the surgery on monday. The GB4 was located on the parietal lobe(top left of lobe) Most of the GB4 was removed and will need radiation to add more time. She may or may not be a candidate for Chemo? She came through the operation very well(miracle in its self) She can speak and does recognise and has a sense of humour but has partial vision only in right eye, left eye ok.

Its too early to determine all deficits at this time but one day at time.

We have started:

epson salt and Baking soda baths(lavender oil drops, helps with alkalinity). Using essential oil rubbed above Kidnies in the adrenaline area to boost immune system.

One big issue is she does not sleep very and probably does not go into rem state.

I could not determine if your mother had the second tumor removed?

Dear Qdmzo My mom second tumor is not operable. 1st they said they cannot open her up again because her karnofsky score is not high enough and she may not wake up this time. 2nd the tumors are in places that she would be definitely paralized. I am more than happy for your sister. And it is a good start for all of you. And dont worry for the deficits. The first days after surgery is worst and they get better and better. Promise. She is not worst than my mom. The surgery damages are done and lets hope that GBM stops doing more damages. My mom even get better during her chemo/radio while her surgeon recommended us that dont do the radio!!!! Because it will affect her quality of life. I do not know what the hell he was thinking. Some of her deficits gone. Like problem in swallowing, concentration and other things. I Do not know why she may or may not be candidate for chemo. Is it because of MGMT? Anyway doctors said to us that the radiation is the main therapy !! I do not know how much that is accurate. Because they mostly do one time radiation. I heard some other cases of doing radio more than once but the time gap was more than 6 months to one year and it is not really recommended because of the damages to normal brain cells. For the sleep you can add Melatonin 30 minutes before she wants too sleep. It is an OTC drug. It is a normal hormon in body at nights and it gets to help with sleep and mood. And it is also showed some effects on GBM fighting. So definitely add it. I am using it for mom. Start at slow doses. If it did not help add more. My mom had problem with going to sleep. We had to lie down beside her and kept her hand or sometimes we had to touch her head back and fort and even on the eyes and she went to sleep. Addition to the physiologic reason they cannot sleep, they are experiencing a lot stress. That is why they cannot sleep. I hope it works for your sister too. Best wishes for both of you.

RE: Why I cannot find any case like My mom with GBM in Compass?

by Qdmazo on Thu Nov 19, 2015 05:29 PM

Quote | Reply

On Nov 13, 2015 6:41 AM amj29 wrote:

On Nov 12, 2015 8:53 PM Qdmazo wrote:

On Nov 08, 2015 4:23 AM amj29 wrote:

Dear Qdmazo

I am so sorry to here about your sister. This is a disease that I dont even want for my enemies. you can find the answer to your question somewhere in the massage board. I really did not come in to conclusion about marijuana, there are so many contraversion about its usage.

If I had the information that I have now, I would try  these;

1. try to get in vaccine trial since they sound one of the most promising approaches under-development (my mom was not eligible). and you sould ask about them from your doctors before surgery because they will need amount of the tumor for producing the vaccine.

2. Try to find out about Valcyte. It seems promisisng. 

3. Please read about Ben Williams and his cocktail and his books and pdf. that really helps.

And try to consider achange in her diet. Alkaline and budwig diet are two things that we are trying for mom. although it is not based on any scientific evidence, but it is really the most available approch with no harm and and it seems to help my mom to go through her radio and chemo without any side effects.

I wish the best for you and your sister. I really Do. And I hope you will have a long and safe journey with your sister.

 

Hi ami29

Thank you for your information.

My sister had the surgery on monday. The GB4 was located on the parietal lobe(top left of lobe) Most of the GB4 was removed and will need radiation to add more time. She may or may not be a candidate for Chemo? She came through the operation very well(miracle in its self) She can speak and does recognise and has a sense of humour but has partial vision only in right eye, left eye ok.

Its too early to determine all deficits at this time but one day at time.

We have started:

epson salt and Baking soda baths(lavender oil drops, helps with alkalinity). Using essential oil rubbed above Kidnies in the adrenaline area to boost immune system.

One big issue is she does not sleep very and probably does not go into rem state.

I could not determine if your mother had the second tumor removed?

Dear Qdmzo My mom second tumor is not operable. 1st they said they cannot open her up again because her karnofsky score is not high enough and she may not wake up this time. 2nd the tumors are in places that she would be definitely paralized. I am more than happy for your sister. And it is a good start for all of you. And dont worry for the deficits. The first days after surgery is worst and they get better and better. Promise. She is not worst than my mom. The surgery damages are done and lets hope that GBM stops doing more damages. My mom even get better during her chemo/radio while her surgeon recommended us that dont do the radio!!!! Because it will affect her quality of life. I do not know what the hell he was thinking. Some of her deficits gone. Like problem in swallowing, concentration and other things. I Do not know why she may or may not be candidate for chemo. Is it because of MGMT? Anyway doctors said to us that the radiation is the main therapy !! I do not know how much that is accurate. Because they mostly do one time radiation. I heard some other cases of doing radio more than once but the time gap was more than 6 months to one year and it is not really recommended because of the damages to normal brain cells. For the sleep you can add Melatonin 30 minutes before she wants too sleep. It is an OTC drug. It is a normal hormon in body at nights and it gets to help with sleep and mood. And it is also showed some effects on GBM fighting. So definitely add it. I am using it for mom. Start at slow doses. If it did not help add more. My mom had problem with going to sleep. We had to lie down beside her and kept her hand or sometimes we had to touch her head back and fort and even on the eyes and she went to sleep. Addition to the physiologic reason they cannot sleep, they are experiencing a lot stress. That is why they cannot sleep. I hope it works for your sister too. Best wishes for both of you.

Dear ami29. Thanks so much for your support. I hope the best for your mom and hopefully new treatments being discussed in the media are made available soon.

My sister is doing much better physically but her mood is getting the better of her. I am planning to visit her in the next few days as we live 3 hours apart. I believe staying positive and fighting this GBM is the way forward.

Sincerely Qdmazo

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