Hello everyone! I wanted to ask when will the first MRI scan will be done after radiation. Will it be after the first chemo cycle or before chemo cycle? After each MRI, how many weeks/months it will take for second MRI?
That’s it. I am scared to get my father’s MGMT test done. He was diagnosed in may, got surgery done at the end of the month which clarifies high grade and by next week one more pathology test confirmed IDH wildtype but ki67 or something like that was 60% which means it’s very rapid. After reading lot of these posts I knew methylation test is a thing even before surgery. Doctors didn’t force it on us to get the test done yet, as it’s just 2 weeks into radiation and even if it’s unmethylated (please god NO!!) the treatment course will not change. But we can know if the TMZ is working or not.
Before starting of radiation, he was little week one week into it he was doing so fine like walking proper and talking. But this week he became week again and is feeling very drowsy all the time and no it’s not the 4 high dose anti seizures day and night he is on because doctors told it will make him drowsy but not like sleeping all the time. He is responding well, still comprehending but became very weak like he can’t stand without support. Today the oncology doctor was telling they saw a small lesion in the thalamus (before radiation) which is making me assume is the cause for weakness and drowsiness. His was primarily in the left tempo parietal lobe.
I want to know what were your symptoms, if you have or your loved ones had lesion in thalamus region.
Also did anybody of you didn’t get methylation test done, and did you have any regrets not doing it? I mean we will get it eventually but I am so scared as this diagnosis is itself very rapid and ugly don’t want anymore obstacles to his treatment.
Lastly, my dear unmethylated people what were your treatment options after standard radiation with chemotherapy?
People from India. I want to know are you using any TTF for yourself or for your loved ones. We are looking for options like optune, ECCT. I know these options are not approved in India yet. But are there any hospitals that would recommend them? Or are you guys importing them? Or are there any other ways you are sourcing it?
If you are using what is the price that you are paying? Please let me know your options
Hello everyone! I am writing this with a heavy heart. We found that my father has an aggressive brain tumor and requires immediate radiation and chemotherapy.
Please suggest best oncologists for brain tumor. Thank you in advance
Hello everyone! I want to know how yours or your loved ones dexamethasone dose tapering was done.
What was the dose before surgery (if it was prescribed), what was the dose after surgery and how it was lowered over the time? Was it continued through out radiation and chemo? How long were you on dexa and are you still continuing it?
I want to ask this question because my father recently got surgery before it was 16 mg (per day 2 doses 8 mg twice)for around 20 days. Now after surgery while in hospital 12 mg per day ( 3 doses )Now it is 4 mg twice for 3 days and then 4 mg once per day for three days then stop completely. The plan is for only 6 days. But from what I have heard this kind of tapering can cause side effects. So want to know how your tapering of dose done to have a clarify and know what to look out for.
Original post - https://www.reddit.com/r/glioblastoma/s/9OUoQa5YyP
Hello everyone, my dad surgery was completed yesterday and he is totally fine. Walking and talking normally, everybody is shocked seeing how well he is doing after surgery.
Coming to update on MRI scan, I talked with the doctor today he said there is no need for MRI right now as his wound needs to heel and coming to resection he said 40-50% was done as it is speech area they removed as much as they can remove safely without affecting my fathers normal habits. CT scan showed no complications.
They also said first they will send the sample for histopathology then for markers. I asked why not both together but the doctor said first let’s confirm the stage then we can go for markers ( MRS confirmed high grade Glioma and 4 satellite lesions one being approx 1.5-2cm). But before leaving hospital I will ask them again to send.
So my father had surgery today, everything is fine. It was awake craniotomy in the left parietal lobe abut 4 cm. After surgery they told he was very cooperative and they did safe resection. They also showed a biopsy sample. But when we asked how much resection was done, they said we suctioned how much ever we could safely and we will only get to know the percentage during next MRI scan. But I don’t think MRI scan will be immediately done after surgery. There will be a CT done tomorrow morning, will it show anything related to resection?
On may 7th my father was diagnosed with left parietal lobe tumour and upon Mrs scan it was found to be high grade and he also has 4 satellite lesions. The main lesion is approx 4 cm and one of the 4 satellite is approximately 1.7cm ( the largest one )
It all started with aphasia symptoms which we thought to be stroke but now we found out it’s tumor.
We were scheduled for surgery on Friday but due to high blood glucose levels they postponed it to next Wednesday.
I want to know what all should I be prepared for during surgery? How can I help my father for surgery? How my father should prepare himself for surgery? How to heal faster or what all tips or anything for after surgery? Anything you can tell me like advices or tips or something to help cautious about please let me know
Also my father is 55 and is having awake craniotomy as it is near speech region and right motor region can be affected as he is right dominated.
On may 7th my father was diagnosed with left parietal lobe tumour and upon Mrs scan it was found to be high grade and he also has 4 satellite lesions. The main lesion is approx 4 cm and one of the 4 satellite is approximately 1.7cm ( the largest one )
It all started with aphasia symptoms which we thought to be stroke but now we found out it’s tumor.
We were scheduled for surgery on Friday but due to high blood glucose levels they postponed it to next Wednesday.
I want to know what all should I be prepared for during surgery? How can I help my father for surgery? How my father should prepare himself for surgery? How to heal faster or what all tips or anything for after surgery? Anything you can tell me like advices or tips or something to help cautious about please let me know
Also my father is 55 and is having awake craniotomy as it is near speech region and right motor region can be affected as he is right dominated.
On may 7th my father was diagnosed with left parietal lobe tumour and upon Mrs scan it was found to be high grade and he also has 4 satellite lesions. The main lesion is approx 4 cm and one of the 4 satellite is approximately 1.7cm ( the largest one )
It all started with aphasia symptoms which we thought to be stroke but now we found out it’s tumor.
We were scheduled for surgery on Friday but due to high blood glucose levels they postponed it to next Wednesday.
I want to know what all should I be prepared for during surgery? How can I help my father for surgery? How my father should prepare himself for surgery? How to heal faster or what all tips or anything for after surgery? Anything you can tell me like advices or tips or something to help cautious about please let me know
Also my father is 55 and is having awake craniotomy as it is near speech region and right motor region can be affected as he is right dominated.
Hello guys!! As the title says can you tell the cost estimates for 5-7 days stay at these hospitals
1.YASHODA SOMAJIGUDA
2.APOLLO JUBILEE HILLS
3.AIG GACHIBOWLI
4.KIMS SECUNDERABAD
The costs should include estimates of 1 day ICU stay. 1 day room stay (private room)- as atleast one day for each is required. I will calculate estimates if it is more than 1 day.
Also costs for basic tests like blood test, MRI,CT SCAN, 2D echo
If there are costs for any additional services please mention those too.
If you have idea of any one of the above costs also please comment as we need to know this urgently. Thank you in advance
Edit: My father is going to be admitted for brain tumour surgery.
Hello everyone!! Please can anyone from India give me a cost breakdown of radiation and chemotherapy for all types and stages. I don’t have any idea about this. Please while giving the estimate also tell me what type of radia and what chemo medicine, do I can have overall idea of what it will be.
Thank you in advance. Hope nobody suffers with this anymore. You and your loved one will heal. My loved ones too.
Hello everyone. It honestly sucks to put a post here, because I never thought I would post in glioblastoma sub. From few days after my fathers first mri scan I was posting and researching in brain tumour sub, but now I feel it is higher grade based on the spectroscopy report and new lesion found that is beside it which might be inoperable.
But now as per the advice I want, my dad recently got diagnosed with left parietal lobe tumour ( will attach MRI report for better understanding ) after observing symptoms of stuttering, slurring of speech, forgetting words and spellings. We thought there was a possibility of stroke so did mri and found out this stupid lesion in the brain. Now doctors are saying we should get the surgery done. But Mrs report also needed. Until this point I was hoping it to be benign, but today my heart shattered seeing the word high grade.
Please tell me the other side of the surgery, how was it for you or your loved ones. Any experience you faced please let me know. As I want to be prepared for all scenarios
Thank you in advance. I really hope you and your loved ones to heel completely and my loved ones too.
Recently my father got diagnosed with brain tumour in left parietal lobe. Since finding it out, it was a difficult journey for our family. We are still consulting different neurosurgeons to have second opinions. But in the meantime I want to know what are the options that we can check. What kind of surgery's there are. Few doctors are saying biopsy, but few are saying direct surgery with biopsy.
My father symptoms were forgetting words, stuttering, slurring of speech, forgetting spellings, spelling things wrong.Currently taking dexamethasone 8mg twice a day, levitracetam 500 twice a day
I would really appreciate, if you or any family member or a friend of yours gone through this process, if you tell me your experience, outcomes would really help me now. Also if you are from Hyderabad, India if you can suggest me some good neurosurgeons would really help me out. Also if you are from India can I know cost breakdown that we can expect?
Thank you in advance
Recently my father got diagnosed with brain tumour in left parietal lobe. Since finding it out, it was a difficult journey for our family. We are still consulting different neurosurgeons to have second opinions. But in the meantime I want to know what are the options that we can check. What kind of surgery's there are. Few doctors are saying biopsy, but few are saying direct surgery with biopsy.
My father symptoms were forgetting words, stuttering, slurring of speech, forgetting spellings, spelling things wrong. Currently taking dexamethasone 8mg twice a day, levitracetam 500 twice a day
I would really appreciate, if you or any family member or a friend of yours gone through this process, if you tell me your experience, outcomes would really help me now. Also if you are from Hyderabad, India if you can suggest me some good neurosurgeons would really help me out. Also if you are from India can I know cost breakdown that we can expect?
Thank you in advance
Recently my father got diagnosed with brain tumour in left parietal lobe. Since finding it out, it was a difficult journey for our family. We are still consulting different neurosurgeons to have second opinions. But in the meantime I want to know what are the options that we can check. What kind of surgery’s there are. Few doctors are saying biopsy, but few are saying direct surgery with biopsy.
My father symptoms were forgetting words, stuttering, slurring of speech, forgetting spellings, spelling things wrong. Currently taking dexamethasone 8mg twice a day, levitracetam 500 twice a day
I would really appreciate, if you or any family member or a friend of yours gone through this process, if you tell me your experience, outcomes would really help me now. Also if you are from Hyderabad, India if you can suggest me some good neurosurgeons would really help me out. Also if you are from India can I know cost breakdown that we can expect?
Thank you in advance
Hello guys! This is urgent. Please let me know best neurologists for diagnosing and treating brain tumour. Also the best neuro surgeons who operate on this and have good track record. Please this is emergency, if you have any experiences good or bad with any doctor share here.