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My Husband's diagnosis of glioblastoma grade 4
Husband was just diagnosed Jan 1rst after having seizures past couple months. Was hospitalized and mri showed tumor in left temporal lobe. Had surgery and had to go into the speech area and we thought he wouldn't be able to speak. Doc said best case scenario that the speech nerve was pushed down by tumor and when they took it out it sprang back up and that's exactly what happened!! He is doing some speech therapy at home but at least he can talk!! He will be starting chemo pill Temodar and radiation Tues.
His oncologist said there could be an issue with taking the chemo pill and it starting symptoms of his cmml leukemia (which he has had since 2016 and been on a wait and watch basis with bloodwork every 3 months). They will be taking bloodwork weekly to monitor his wbc, rbc and platelet counts. The pill can lower these to where he needs transfusions. He will be watched very closely, and right after bloodwork, we will see doc for counts updates.
My question is anyone who is on Temodar do u take it before bed and how side effects have been? Also, we have heard of Optune. Is anyone on that and has it helped?
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My husband never was offered optune therapy. I don't know that we would have tried it though because from what I have read about it, it seems quite difficult to deal with. Did your husband do radiation therapy? Mine did and I think that just killed him quicker. He also didn't have the receptors for the temodar so I don't think the temodar helped him at all. He just couldn't get a break. I am glad though he was mostly peaceful in the bed during his decline. I have read that some GBM patients can be very agitated and vocal and abusive. He was not that. He just slept most of the time and didn't complain much. I just sat and held his hand as much as possible to comfort him.
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6 ReactionsWelcome, @crf. Is your husband currently doing any treatment? How is he doing? How are you doing?
Good news update here to offer encouragement to others. My husband had an MRI on 3/4/24 which showed his Glioblastoma has shrunk back to about 1.5 cu cm, or the size it was when discovered last October. We feel very blessed. He starts cycle 4 of Temodar this Friday. Maximum dosage, which he tolerates amazingly well, especially for an 86 year old man. The combination of radiation (10 treatments, SAGA trial at Mayo) and Temodar have been effective. Given that he couldn’t tolerate (cognitively) the Optune device, we feel so fortunate for his great response.
All is not roses, in full disclosure. His mild cognitive impairment has accelerated into something far more troubling. Dementia unmasked by the treatments, the neurologist believes. Nevertheless I celebrate the good news!
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3 ReactionsThis is so good to hear! So happy for you!
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1 ReactionMy sweatheart right temporal lob Glioblastoma high grade. 11/102022 6cm surgery removed tumor no visible sign but molecular residual recurrent smaller tumor 1cm tumor free
11/10/2023
Recurrent tumor 02/24/2024 fighting this now.
42 days of radiation, then 10 days of radiation.
12 rounds of chemotherapy
Zerabev infusion every two weeks, gliostein with temodor 5 day cycle every 42 days.
Plus Optune device for 12 months.
Kepra anti seizure drug. We stopped using the Optune device and weaned off everything except temodor.
Very successful we were reducing Kepra for Physicsl Therapy. Now on Vimpat.
Never had a seizure until 4 weeks ago. Small or what could have been a seizure was the beginning of the new tumor.
Optune worked, but you have to be diligent about its use. Never had a problem with the device at all.
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1 ReactionWelcome, @richardrollins. So nice to meet you and your sweetheart. I love the bright colors of smiles and balloons in the photo.
How is she doing on Vimpat?
We still find it hard to adjust to so it doesn’t sedate her.
We are restarting our chemotherapy infusions, Carboplatin and Avastin. The Medication cost for Avastin is $2,000 a month. Our adjusted Income is $65,000 so we have applied for Help from the drug Companies.
I had a friend who was penniless and he had two surgeries and Medications from Stanford University Hospital at no cost.
Our total Medication bills before Avastin is $1,000. I spend $695 a month for medical insurance Medicare Cigna plan G Aetna Silver Script Plus for drugs and Medicare A and B Plus a dental and Vision. I’m still getting clobbered. Does anyone have suggestions on what to do about these costs.