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Question for Raani
Raani, I'm wondering. I remember you said that your husband suffered a brain bleed after taking the Avastin. Can you tell me what his symptoms were? As I posted previously, our son has declined since his first Avastin treatment last week. He has gotten weaker and now his right side, the one that has been most affected by…
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Getting a second opionion by phone?
Has anyone ever gotten a second opinion over the phone? Our son's NO is putting him on Avastin. He gets the first infusion tomorrow. However, I am concerned that no other chemo drug is being added. We were told that more or less, this Avastin is the drug of last resort, and median survival is 6 months. (His MRI last week…
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Full brain radiation
My Mother had full brain radiation four years ago this April. She can't walk, she shuffles, she does not know when she uses the bathroom, she makes up stories, she never thinks she is hungry but when we put food in front of her she will eat, she is always thirsty, she hardly has any short term memory, very bad eyesight.…
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What to do when an MRI is stable -update on my sister- and some rambling thoughts
Dear All, I have not posted an update in a while. My darling sister is doing well (if one can do well from a diagnosis such as hers, anaplastic astrocytoma). Her MRI brain is improving, she just got the results of her latest one; there is no abnormal blood flow seen on the MRI spectroscopy. The cyst that had formed in the…
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Radiation damage treatment Hyperbaric Oxygen Treatments
I was unable to get back to the post about bladder cancer post radiation damage, I am still looking for the post, However I hope that this will be read by the wife whose husband had radiation and now is having trouble... However I might add, trouble is a term that is used to lightly for radiation damage... Although…
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Last MRI not good news
I was dx 05/01/11 with Glioblastoma Multiforme. I have had the radiation and Temodar, 42 treatments. After some complications with the surgery site, an infection, and a month break from treatments I started the Avastin and 5/28 Temodar. The next 2 MRIs showed that the tumor was shrinking. The MRI that I just had Thursday…
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Brain Stem Glioma
my grandaughter was diagnoised whith brain stem glioma non operateable i would like to here of surivors of this type of cancer please she is only 5
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headaches
my neurologist is very hard to reach, so I have called upon my family doctor to page him in order to get his attention. Let's see if this will work. I have had headaches since my diagnosis of an aa3 aug 2010 which was completely removed through surgery. I'm on topamax now. But sometimes that doesn't even help. I get sharp…
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What items make you feel better?
Hi, I'm a cancer survivor who is working to help other patients/survivors. Thinking about your treatments and side effects, physically, mentally, etc. What type of items could someone give you to help make you more comfortable. Example: I had dry mouth and nausea - fruit flavored hard candy helped. Reading helped me pass…
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Starting Radiation and Temadar...suggestions
I am starting radiation and oral Temadar in a few days and I'm worried about the side effects? Does anyone have any personal suggestions on coping with their side effects?
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Mass effect
Has anybody found anything that relieves mass effect ?
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Woodysmom? Rory1987? Sadinholland?
Hi, you guys. I haven't seen posts from you guys in a few months and I don't know if I just missed posts that you have done, or if you have just taken a little break from CSN....? I am wondering how you, Rory, are doing, and how your husband, sadinholland, is doing, and how your son Loren is doing, Woodsymom? I hope that…
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beother needing prayers
i am asking prayers for my brother . He is only 58and as I am typing his bdy is shutting down. I have stage 4 brest cancer with mets to the bones and I am unable to be there.He lives in indana and i am in Missouri. i am unale to drive the distance and thought about fling but i have to put to much on his wife and kids…
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Repeated Radiation
I am starting a new thread to hear the experiences of you who went through a radiation treatment second time. I wanted to learn as much as possible before I make the decision for my husband. Jacob has a recurrent Oligodendroglioma grade 3 on the left frontal lobe. He had the dx in 1997 with oligo 1 and went through…
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Not a good MRI, have some hard decisions ahead
Well, yesterday wasn't a good day. David's MRI showed "dramatic progression" of the brain cancer. In the words of his NO "nothing we do is going to change the course of the disease." I asked him if the tumor is now a grade IV, and he said, "Oh yes. This thing is very agressive". In fact, to me, he seemed incredulous as to…
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Grade 3 Anaplastic Oligo - OHSU BBBD Trial
Has anybody tried this after disease progression despite radiation and Temodar?
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Grade III Oli - MRI -No Cancer Present
Diagnoised September 25th with Grade III Oli, 99% of left frontal tumor was removed, nothing showed on MRI after surgery, completed 6 weeks Chemo/6 weeks Radiation. Only side effect was I now sport a mohawk. MRI 1 month out from treatment showed no cancer present, but started 5 days Temodar with 28 day break. I am working…
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fatigue/unsteady gait/slowness after treatment for GBM
My husband was diagnosed with a GBM after a seizure in early June, 2011. He underwent surgery followed by 6 weeks of radiation and Temodar to treat the tumor. My question involves recovery from all the treatment - are you always fatigued? Does the treatment enhance the disease to increase unsteadiness and slowness or is it…
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Avastin failed- unfortunate for us-Need your suggestions
I was hoping Avastin will work for my husband,Jacob, for a long time (he has AA3).Unfortunately,after one infusion, he had a seizure and an unexpected hemorrhage at the residual tumor location.There are conficts of opinions among NO and the surgeon about the root cause;bleeding caused the seizure or seizure caused the…
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more trouble
2/4 Not much going on. David had some company pretty much all day. I think it wore him out. 2/5 I asked for everyone's understanding--David didn't want visitors today. He's really crabby and tired and still in a lot of pain. They started him on the antibiotic that would target the bacterial infection. Larry (my…
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New, confused and scared...
Maybe its too early for me to post here, but just discovered last week I have lung cancer, and my pulmonary surgeon ordered a brain MRI and found 2 "concerning" spots, and cancelled the futher diagnostic stuff for my lungs. I dont even have an oncologist yet, they were supposed to call me back yesterday. Of course its the…
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Astrocytoma G2 frontal - temodar and radiation
Hi All! I was diagnosed with a large, inoperable fibrillary astrocytoma last summer. I did 5 1/2 weeks of radiation (5 days on) and temodar (7 days a week), month off, then started my 12 months of 5on/23off rotation of temodar. I tolerated my rad/temodar schedule well, living away from home by myself to have treatment…
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Follow-up on DavidO
Hi to all - I don't post very often, but I definitely keep up on the board and pray for all of us as we go through this difficult journey. My husband, Dave, age 51, was diagnosed with a GBM last March. They were able to resect it, and he has undergone the standard of care, although he hasn't been able to complete very many…
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Phoney Avastin?
Tonight's CBS national news broadcast had a very short clip about some vials of phoney Avastin circulating. Said there was no proof that anyone had been harmed. Does anyone know anymore about this? Or, has anyone's doc say anything about this? Depending on the results of our son's MRI this Monday, he may be starting it.…
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About to start Avastin. and terrified
About to start Avastin. I had my 1st resection 1/7/11 and my second on 1/17/12. Since my 2nd surgery I feel like I am living in a fog. So tired all the time, feeling of being "slow". My surgeons believe it is because of the radiation I received after surgery #1. They say it may or may not get better. I was able to return…
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I need some answers please!
Hello all, My boyfriend is 23 years old and recently diagnosed right before christmas with stage 2 astrocytoma. His tumor is the size of an orange right on top of his thalamus. All of the doctors we have seen (3 of them) have said its inoperable. He was put on anti seizure medicine keppra and he has not had any seizures…
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AVISTON?
I have been in temador the last few months. 5 days on 23 off. My Mri's havebeen coming back clean. My MD wants me to try Aviston. I am alittle confused as to why he wants this change when everything is OK. Although I am gettng pretty nauseous and extremly tired from the Temadar. Pros and cons to Aviston?? Also, anyone ever…
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Glioblastoma grade 4, aged 24
My boyfriend was diagnosed with a glioblastoma grade four tumour in August 2010, aged 23. He has had surgery, where they removed part of it but they couldn't take it all as it would have left him paralysed. He then had six weeks of daily radiotherapy and is now on his 13 month of oral chemotherapy. I have been with him…
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Radiation necrosis from radiaton treatment
My husband has a rare tumor called ganglioglioma in left temporal lobe area. He has had 2 surgeries and done great. This last surgery required chemo and radiation and now the radiation has caused necrosis. He now has speech and reading problems. He had his first round of avastin. Anyone out there ever had this type tumor…
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Birthday Anxiety
On March 10th I will turn 27. I am not concerned about the age but it is difficult to get excited about the special dinner plans with family and friends when I am thinking how many more of these will there be? I don't have a timeline hanging over my head but I think of the day when we face the birthday when I am ill or not…