Low Grade Tumor - fatigue & headaches

23 Posts | Page(s): 1 2 3  Next 

Low Grade Tumor - fatigue & headaches

by mommamin on Wed Jun 09, 2010 10:03 PM

Quote | Reply

My husband was diagnosed with a low-grade glioma the left parietal/temporal lobe and that it's not operable due to the size and location.  The NO said there was no point in doing chemo and/or radiation until it transformed to a more aggressive grade.  Both the NO and NS did not want to do a biopsy yet (since surgery and treatment are not currently an option and there is apparently an increased risk with this procedure based on the location), so we don't know the grade or the type of tumor. We were told that the watch & wait approach was recommended.

We did get a second opinion from another NO and NS, who both concur that surgery would be extremely risky, and that he would most likely come out with severely diminished capacity.

I was hoping I could get some feedback.  I know that most of the people posting on this board are dealing with GBM.  However, did any start out with a low-grade glioma?  If so, do you remember how you felt at that time?  How long did it take before the tumor transformed?

My husband was weaned off the dex in April, but has been steadily increasing his dose of Dilantin to get to the right level.  He's now on 600 mgs/day and he's still in the low range.  I know the headaches and mood swings are tumor-related, but I'm wondering if the fatigue and his feeling like his limbs are limp, are from the meds or the tumor.  If it's the meds, does the body ever adjust, or are you always tired?

He had an MRI a week ago, and we get the results next week.  We pushed and cajoled to get a PET scan and have one tomorrow.  At least this will give us some confirmation of the tumor grade, even though we won't know the type.

I'm trying to figure out why he's feeling so poorly already.  Edema, growth, meds, or just the existing tumor pressure?

I would appreciate any feedback that you can give.  Its' one thing to read medical journals and documents on the internet.  However, I have found that the best information comes from those who have been exposed to similar situations.

If you have any suggestions on things he can eat, drink, or do to help alleviate his symptoms, those would be welcome too.

Thanks for listening.

RE: Low Grade Tumor - fatigue & headaches

by I_love_Gary on Wed Jun 09, 2010 11:17 PM

Quote | Reply

My husband's tumour was also temporal/parietal but on right side.  He did have surgery with major deficits physically but not mentally.  I don't know how it differs on left side.

If they have it diagnosed as a low grade glioma, it will one day become a high grade glioma, so I know they like to see the aggressive growth before acting.  I don't know why, as it would seem to me that the smaller the better in terms of destroying it. 

 I don't see where you have indicated the time between MRI's, but if it becomes aggressive, it will grow quickly.  If it is growing, and if it is pressing on other areas of his brain, or causing swelling, he will have the symptoms you describe like headache, weakness, mood changes, fatigue, swelling of limbs, poor appetite, etc.  He probably needs the dex.  The doc should be made aware that his symptoms are more severe.  The symptoms of brain swelling are just the same as the symptoms of the tumour.  They should not be ignored.  Call the doc and update to find out if you can give a little dex.  You would know in 24 hours if it was swelling, he would have a very marked improvement.  Dilantin will have some side effects, but you seem to be describing swelling.  I hope it is not from the tumour growth, but keep us posted ok?  Let us know how things go. 

We all want to help here.          DL

RE: Low Grade Tumor - fatigue & headaches

by Gbm_Wife on Thu Jun 10, 2010 02:39 AM

Quote | Reply

I have learned thru others with low grade tumors that chemo does not work on them so usually they do not use it. 

 

Dilatin is a tricky drug to  regulate.  It can cause tumor like symptoms if it gets too high out of the theraputic range.  Usually brain tumor patients use Keppra.  When my husband was on dilantin we would have to get weekly blood draws to check the range.  Alot of factors could affect the range as well.  He has not been on it for 6 years so I can't remember all the details. Hospitals like to use dilantin because it is easy and quick to check levels if you are having problems with seizures.  With Keppra we never have to check levels and most BT patients don't have problems with it.

RE: Low Grade Tumor - fatigue & headaches

by mommamin on Thu Jun 10, 2010 02:47 PM

Quote | Reply

On Jun 09, 2010 11:17 PM I_love_Gary wrote:

My husband's tumour was also temporal/parietal but on right side.  He did have surgery with major deficits physically but not mentally.  I don't know how it differs on left side.

If they have it diagnosed as a low grade glioma, it will one day become a high grade glioma, so I know they like to see the aggressive growth before acting.  I don't know why, as it would seem to me that the smaller the better in terms of destroying it. 

 I don't see where you have indicated the time between MRI's, but if it becomes aggressive, it will grow quickly.  If it is growing, and if it is pressing on other areas of his brain, or causing swelling, he will have the symptoms you describe like headache, weakness, mood changes, fatigue, swelling of limbs, poor appetite, etc.  He probably needs the dex.  The doc should be made aware that his symptoms are more severe.  The symptoms of brain swelling are just the same as the symptoms of the tumour.  They should not be ignored.  Call the doc and update to find out if you can give a little dex.  You would know in 24 hours if it was swelling, he would have a very marked improvement.  Dilantin will have some side effects, but you seem to be describing swelling.  I hope it is not from the tumour growth, but keep us posted ok?  Let us know how things go. 

We all want to help here.          DL

Hi DL:

Thank you for responding.

My husband's first MRI was March 1, and his second was on June 2.  He had edema in March, when he was first diagnosed and I'm wondering if it's back again.  I am just praying that it's not tumor growth.

He definitely has mood changes, headaches, weakness, fatigue, and confusion (no swelling of limbs or loss of appetite).

I hope your husband is doing okay.

Take care,

Mindy

RE: Low Grade Tumor - fatigue & headaches

by mommamin on Thu Jun 10, 2010 11:53 PM

Quote | Reply

On Jun 10, 2010 2:39 AM Gbm_Wife wrote:

I have learned thru others with low grade tumors that chemo does not work on them so usually they do not use it. 

 

Dilatin is a tricky drug to  regulate.  It can cause tumor like symptoms if it gets too high out of the theraputic range.  Usually brain tumor patients use Keppra.  When my husband was on dilantin we would have to get weekly blood draws to check the range.  Alot of factors could affect the range as well.  He has not been on it for 6 years so I can't remember all the details. Hospitals like to use dilantin because it is easy and quick to check levels if you are having problems with seizures.  With Keppra we never have to check levels and most BT patients don't have problems with it.

Hi GBM Wife:

Thank you for the information, I'll check into switching to Keppra to see if it makes a difference.

Thanks,

Mindy

RE: Low Grade Tumor - fatigue & headaches

by ABL87 on Fri Jun 11, 2010 06:30 AM

Quote | Reply

Hi there.

My sister (25) was diagnosed with a large 'inoperable' brain tumour on May 6th. It is also in her frontal left lobe, reaching down to her brainstem. She did however have a biopsy and it came back as 'at least grade 2 astrocytoma'.

Like your husband, the surgeons told us this was inoperable. They didnt offer chemo, they offered 5 and a half weeks of radiation. This didnt sit well with us, we were not prepared to watch and wait for this time bomb to transform into grade 3, and then 4. So we contacted Charlie Teo (Sydney, Australia) for a second opinion.

Im not sure where you are based, but Charlie Teo is #1 recommended surgeon in America,and Australia (or very close to it), and people often refer to him as the best in the world, so it was worthwhile getting his opinion. We met with him on Tuesday and he thinks he can operate (genius).

Yes its very very risky, but you know a cure for brain cancer could be just around the corner. Our aim is to keep our sister here for as long as possible, even if that means having very risky surgery and coming out with side effects, hoping that a cure will pop up in a few years.

I strongly recommend you contact Charlie Teo, send your husband's MRI's to him http://www.neuroendoscopy.info/theoIntro.asp

Im not guaranteeing he will be able to operate on your husband, but we wont told by 3 other neurosurgeons that my sisters tumor was inoperable, yet Charlie Teo thinks he can get out 50% 'easily'.

All the best.

RE: Low Grade Tumor - fatigue & headaches

by mbg53 on Fri Jun 11, 2010 08:23 AM

Quote | Reply

hi, mindy. I agree with DL. sounds like edema, which they should be able to see on sn mri.

RE: Low Grade Tumor - fatigue & headaches

by mommamin on Fri Jun 11, 2010 05:41 PM

Quote | Reply

On Jun 11, 2010 6:30 AM ABL87 wrote:

Hi there.

My sister (25) was diagnosed with a large 'inoperable' brain tumour on May 6th. It is also in her frontal left lobe, reaching down to her brainstem. She did however have a biopsy and it came back as 'at least grade 2 astrocytoma'.

Like your husband, the surgeons told us this was inoperable. They didnt offer chemo, they offered 5 and a half weeks of radiation. This didnt sit well with us, we were not prepared to watch and wait for this time bomb to transform into grade 3, and then 4. So we contacted Charlie Teo (Sydney, Australia) for a second opinion.

Im not sure where you are based, but Charlie Teo is #1 recommended surgeon in America,and Australia (or very close to it), and people often refer to him as the best in the world, so it was worthwhile getting his opinion. We met with him on Tuesday and he thinks he can operate (genius).

Yes its very very risky, but you know a cure for brain cancer could be just around the corner. Our aim is to keep our sister here for as long as possible, even if that means having very risky surgery and coming out with side effects, hoping that a cure will pop up in a few years.

I strongly recommend you contact Charlie Teo, send your husband's MRI's to him http://www.neuroendoscopy.info/theoIntro.asp "" target="_blank" rel="nofollow">http://www.neuroendoscopy.info/theoIntro.asp " target="_blank" rel="nofollow">http://www.neuroendoscopy.info/theoIntro.asp

Im not guaranteeing he will be able to operate on your husband, but we wont told by 3 other neurosurgeons that my sisters tumor was inoperable, yet Charlie Teo thinks he can get out 50% 'easily'.

All the best.

Hi ABL87:

Thanks for the information.  When is your sister having her surgery?  I wish you both the best of luck!  Would you mind letting me know how it goes?

I am inclined to agree that surgery has the best effect on delaying the deficits and the onset of a more malignant form.  It appears from studies, that people with the longest survival are those that had at least a portion of the tumor resected. 

I will definitely look into Charlie Teo, he sounds very promising.

Thanks again, and best of luck!

Mindy

RE: Low Grade Tumor - fatigue & headaches

by mommamin on Fri Jun 11, 2010 05:55 PM

Quote | Reply

On Jun 11, 2010 8:23 AM mbg53 wrote:

hi, mindy. I agree with DL. sounds like edema, which they should be able to see on sn mri.

Thank you mbq53:

I had suspected edema, but I'm not sure what would set it off. Hopefully a little dex is all he needs to get back on track.

Thank you!

Mindy

RE: Low Grade Tumor - fatigue & headaches

by tommybear on Fri Jun 11, 2010 09:50 PM

Quote | Reply
Hi there, This is my first time posting on this forum, but saw your message and had to write. I have a low grade astrocytoma in my left temporal lobe - grade II. I had surgery in August of last year and only had about 30% of it resected, due to the fact that the tumor has extensions that reach into good brain tissue. So, basically, they did a biopsy. I did have stereotactic radiosurgery in December and am awaiting results from that. I was told with the low grade tumors, since they grow more slowly, that the results from radiation could take longer and what we are hoping for is tumor control, that it probably will not be cured. No chemo. From what I understand, chemo is not real effective on low grade gliomas. I am doing okay. I haven't had an grande mal seizures, I have periods that are called "absence seizures" where I get disoriented, dizzy, kind of black out, but it doesn't affect me too much physically, other than having a pretty severe headache. I do have other issues, though. I also have the weakness/tingling/numbness in the left side of my body, which is very bothersome. I tire very easily. Often times it is difficult for me to make it through a full day of work. I haven't been on any medications, so I am not sure side effects, but have had to accept what is my new "normal". I'm sure that everyone here has learned about that. I'm afraid that I don't have a lot of good advice, except that I think it is important for us (brain tumor survivors)to accept that our lives have changed, what I mean is physically, emotionally, and mentally, and to give ourselves a break. I tend to get frustrated when I say something wrong, or don't remember something, or have to rest. I find that when I am overwhelmed or tired, or spend too much time on the computer, I will feel worse. I think that meditation/yoga is beneficial, although I can't say that I have spent enough time doing that for myself. I do have to say that having a low grade tumor can be frustrating....not knowing if and when it will transform into a higher grade, accepting the fact that no, it's not going away, wondering if new problems are being caused by the tumor....anyhow, I am rambling, but do know how your husband feels. I was told in the beginning that I should watch and wait, but chose to get a different opinion, therefore having the partial resection and stereotactic radiosurgery. I am thankful that I did, I guess just to feel as if something has been done. Is your husband's tumor embedded deeply or have many "extensions"? That is part of my problem, is that the tumor is not confined to one little area - it has extensions that reach out... By the way I will have my one year "tumor" anniversary in July! Take care. Wishing you and your husband peace, Michele S.
23 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

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