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What cancer patients, their families, and caregivers need to know about COVID-19.

In need of what to expect

Posts: 24
Joined: Jan 2011

My name is Yvonne,Me and my fiance were engaged on Christmas day!New years day I brought him to the ER thinking he was having a stroke,Lots of tests later we find out he has Glioblastoma metahome stage 4.He had a brain byiopsy last week and a fuctional mri Saturday to see if surgery is an option.His tumer is located deep in his LEFT FRONTAL LOBE.The steirods he,s on shoots his blood sugar way up and is now taking insulin.Its very difficult to keep it under control.My heart is so sad but remaining positive.Im 38 yrs old.He,s 51.Instead of planning our wedding were planning surgery,chemo and radiation.Im now his caregiver,no family in the area.Theres no where else Id want to be though.I love this man and will fight with everything I am for him.Please tell me what else to expect...

Posts: 358
Joined: Aug 2009

I am so very sorry to hear of your fiance's new diagnosis. My husband of 32 yrs was diagnosed with GRIV GBM in March 2009. He was 56. It was inoperable. We went the normal protocal initially...radiation and chemo. We then went to avastin treatments. As you know, this is a very aggressive tumor. He passed away in June 2010.

Since his passing, I have read about a clinical trial that takes cells from the tumor (if it can be removed) and makes a vaccine which is then injected into the patient. There seems to be some positive results coming from this trial.

This is a difficult road you both have ahead of you. Stay informed of clinical trials, try to be positive and enjoy every day you have together.

Best wishes in you battle against this cancer.

Posts: 24
Joined: Jan 2011

Thanks for the advise and I will look into it!

Im so sorry to hear about the loss of your husband,we find out Friday if surgery is possable.I act strong in front of him but Im very scared of the thought of surgery,Will It mess him up even more?Will it turn out good or bad?So many thoughts.

Thanks for sharing

Posts: 3
Joined: Jan 2011

My father was diagnosed with GBM after having two seizures on New Years Eve. He lost the ability to use his right side which he slowly gained back slightly. He also had a tumor in his frontal lobe on the left side. He also had aphasia so he couldn't express his thoughts. We decided to take as much of the tumor out as possible. Unfortunately there was a finger like projection going up into his basal ganglia which the surgeon could only hollow out. They did an awake craniotomy on Jan 10th. He was able to express himself just enough to answer yes/no questions and count to 20, so they could keep him interacting during the surgery so they didn't remove anything that would limit his speech or right side movement. They did remove most of his frontal lobe though. Since the surgery, which was a success, his right side weakness is pretty amazing. Its so hard to see. He still has affasia which is more pronounced when he is tired. He had a tough time finding the right pain meds to allow him to sleep but that would still allow him to do PT and OT. His hard work allowed him to go to Rehab today. He has 15 days before he will go home. The surgeon says he doesn't expect his right side to progress past the point he was at before the surgery. This means a walker with someone bracing him. He is 64 and was very active- did a small roofing job on the most ambitiously designed play structure for his best friend- his 5 yr old grandson, my nephew, who thinks my dad is a god. My sister, who is his best advocate lives right by the hospital. i live 3000 miles away. i just came home after seeing him to the point he could go to rehab. I feel awful leaving my mom and sister to deal with so much. He starts chemo and radiation next week. He is also receiving acupuncture every other day. I highly recommend this as many hospitals will have an acupuncturist who was hospital privaleges.

Posts: 24
Joined: Jan 2011

Thanks for sharing,Im so sorry what you and your family are going through.I will look into acupuncture,Dino was a truck driver for 25 years and overweight,Another knock against us I worry,He has already lost 25 lbs in the last 2 weeks.Im sure its very hard on you being away,I cant imagine if he couldnt talk to me or express himself....

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