Loading...

Qdmazo's Message Board Messages

Loading...
Showing 1 - 10 of 8

Page 1 of 1

Just to add to last post. Here in Canada we have a medical license for THC and or CBD extracts. Actually both are found in natural marajuana buds of the plant. As far as proper amounts to be effective you will need to consult with physicians and other sources of information such as the internet(Google). I believe the THC extracts do help and you will need to be resouceful in finding the right amount.

Will be one year next month that Surgery &  9months that chemo/radiation ended. Has been on THC oil three times a day, helps with appetite and settles stomach also has  antinflamatory properties(suppose to help shrink tumours?)

No seizures as yet? Behaviour is back to normal as we have tried a med from the diazapam family, Still cannot walk but moves legs and arms?

GBT Stage 4

by Qdmazo - October 12, 2016

My sister is 66 and has had the surgery for removal of most of the tumour. Subsequent chemo and radiation. Now she is on 6mg of Dexamethodone daily. (heavy steroids) She is bed riddden but can move legs and arms but not upper torso. Is it common for patients on Dex to be bed ridden? Ans what if anything can be done to slow the negative affects of the Dex.

RE: Angry & verbally aggressive!

by Qdmazo - September 23, 2016

New meds (diazapam family) are helping with behaviour no more outburstsoutbursts. 

RE: Angry & verbally aggressive!

by Qdmazo - September 20, 2016

My sister is 66 years old and has just started being angry and verbally abusive. Her steroid dose (Dex....) was increased to 6mg two weeks ago. Not sure why this new behaviour but she is on a cocktail of meds and we do not know what the tumour is doing  post surgery(11 months ago, debulking and radiation(completed) some chemo but did not finish due to lung blood clots). Hospital will not do any more tests(cat scan...mri etc) as she has been delared terminaly ill. She is bed ridden due to the affects of the steroids(muscle deterioration and possibly affects of surgery and sections of tumour remaining) She remains in hospital.

The verbal abusive (mood swings)is similar to other mental disorders of the brain as in dementia etc. We are speaking with the doctor but I know celexa helped my father with his mood swings due to vascular dementia. If anyone has other ideas I would like to hear them.

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

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?

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.

Showing 1 - 10 of 8

Page 1 of 1

Loading...

About Qdmazo

Researcher
Brain Cancer
Alternative Treatments, Clinical Trials and Research

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