| Author |
|
modestocliff
New User
Joined: 20 Apr 2007
Posts: 5
Location: Modesto, California
|
 Posted: Mon May 14, 2007 3:26 pm Post subject: Accelerated Radiation/Chemo |
 |
|
Hello,
Wife had 80% removal of tumor 3 weeks ago. The plan was for radiation and chemo for the remaining 20 or more % after surgery but this was not an urgent issue and scheduled appointment with Nuero Oncologist was to be in late June. Now with many problems after surgery, the appointment has been moved up to this Weds. I have heard that once treated with radiation a tumor can come back much more aggressivly than originally developed. Can anyone who has been through this suggest any critical points I should bring up with the Oncologist? We are scared and want to make the right decisions.
Thanks,
Cliff
_________________
Cliff |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3459
Location: Tennessee
|
| Posted: Mon May 14, 2007 3:48 pm Post subject: Re: Accelerated Radiation/Chemo |
|
|
Hi Cliff,
Do you know what type, grade, size, and location your wife's cancer is? Those are key questions that can determine treatment and prognoses for your wife. You should bring these questions to your wife's oncologist. Also, bluntly ask the oncologist for a prognosis with and without treatment. Obviously, talk with your wife before asking this to her oncologist. Some people what to know everything (me); others would prefer to have as little information as possible.
Not having any of this information, it does sound like the medical team found a more aggressive cancer than anticipated and therefore calls for a more aggressive treatment plan.
I do not even talk about "cure" for high grade brain cancers... there will always be that chance for a recurrence. It took almost 13 years my recurrence, but it did happen. I elected not to have radiation therapy the first time since it was a boarder-line cancer grade. This last time I did have radiation therapy. However, I know that the probability is that some day in the near or distant future, I will again experience a recurrence. The odds are that it will be a higher grade since, if any cancer cells survived, it is likely that the will be the more aggressive cancer cells. It is kind of ironic, the radiation works best on the most aggressive cancer cells yet some can still survive.
Finally, remember that cancer is all about "probabilities." I should not be alive today. I have beat the odds. All that your wife's oncologist will give you is "most people with this type of cancer....."
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
|
| Back to top |
|
|
|
modestocliff
New User
Joined: 20 Apr 2007
Posts: 5
Location: Modesto, California
|
| Posted: Tue May 15, 2007 11:20 am Post subject: Re: Accelerated Radiation/Chemo |
|
|
Thanks for the reply Brainman,
She had a biopsy in Jan indicating Oglioastrcytoma grade 2/3. At first in an inoperable part of the Parietal lobe. Many opinions later we found someone willing to try more. 80% removal 3 weeks ago. At that time the plan was to go through rehabilitation for right side weakness and healing, to contact the Neuro Oncologist in a 4-6 weeks to discuss radiation for the remaining 20%. In addition to the weakness she has many many emotional and neurological problems. The rehab doctors say it is the remaining tumor responsible but are very tight lipped when I try to talk to them. I think it is the damage from the surgery but I am not a professional. They moved up the Oncology appointment. But as you say it could very well be they found the tumor more aggressive than the biopsy showed.
Cliff
_________________
Cliff |
|
| Back to top |
|
|
|
rlee
Site Admin
Joined: 15 Jan 2006
Posts: 245
|
| Posted: Sun May 20, 2007 7:50 pm Post subject: Re: Accelerated Radiation/Chemo |
|
|
Brain surgery for a tumor is not easy, I suspect the reason you had to find someone is because of the location. Thus some of the residual deficits are likely related to the surgery. Trying to remove tumor from the brain is very difficult. I agree with Jim's previous post. Talk with your oncologists about the options and the likely outcome. It sounds like the situation will be difficult. Best wishes.
_________________
RLee, MD
Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions. |
|
| Back to top |
|
|
|
modestocliff
New User
Joined: 20 Apr 2007
Posts: 5
Location: Modesto, California
|
| Posted: Tue May 22, 2007 10:21 am Post subject: Re: Accelerated Radiation/Chemo |
|
|
Met with Oncologist Monday the differences in her MRI scans are remarkable. The plan is to stabilize her on medication then start 6 wks radiation for what is left of the tumor and some surrounding tissue, then chemo for a year. She is home now and continuing to improve physically and along with that and a much simpler environment her mental state is better too. Still has fits of rage and sadness but things are getting better. Will see a Physiologist tomorrow and hopefully they will adjust meds some more. I think some of the emotional difficulties are related to Keppra, she did much better on Dilantin and hopefully a better mood stabilizer than Depakote.
_________________
Cliff |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3459
Location: Tennessee
|
| Posted: Tue May 22, 2007 2:54 pm Post subject: Re: Accelerated Radiation/Chemo |
|
|
Hi Cliff, glad to hear that your wife is doing so much better. If you read my story (link below) that I had an Oligodendrogioma grade 3. It sounds like your wife has a much larger tumor than I did. The first time (1992-1993) I had chemotherapy, CCNU for 13 months but no surgery and no radiation. I know that chemotherapy has changed a lot since then. But those 13 months just about killed me  . I turned 40 that year and told my friends: "I don't mind so much being 40 years old, but I feel like somebody owes me a year!"
Until just recently, I was on Dilaten, Phenabarbitol, AND Keppra. I had moderate mood swings before the cancer. Since before Christmas, my mood swings have become even larger. There are times that I cannot go to sleep even after taking all of my medication (each with the warning "May make you drowsy"). With my memory loss problem on top of that, the Neurologist is changing me over to Lamictal. So far, I am very pleased with the change. Hopefully, your wife and her medical team can find the right combination for her as well. I will keep both of you in my thought and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
|
| Back to top |
|
|
|
modestocliff
New User
Joined: 20 Apr 2007
Posts: 5
Location: Modesto, California
|
| Posted: Thu May 31, 2007 2:34 pm Post subject: Re: Accelerated Radiation/Chemo |
|
|
Thanks for your thoughts and prayers Jim. Please know ours are with you too. We are still trying to regulate meds and move on. A very slow process so far. Met with Phycologist once who wanted to contact all other docs before making any new recommendations. I am not very confident in her yet but have no choice but to continue on in the system making my opinions known when I can. I hope to come up with an overall plan that is comfortable for us. The best radation oncologist we can find and a dietary plan that can help her get through this next phase. Yoga, meditation, spas, music, anything and everything that will put a positive influence into things. I find bits and pieces here and there but have yet to contact anyone who can make suggestions based apon their experiences or a loved one's. I keep searching and hoping to find peace in our minds, the strength to continue and some small amount of happiness among all the kaos.
Cliff
_________________
Cliff |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3459
Location: Tennessee
|
|
| Back to top |
|
|
|
|
Search 
Email Digests
Register to post
Profile 
Check private messages 
Log in
What is this ?
We subscribe to the HONcode principles. Verify here. All content and posts are copyright.
