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JLBrown

About

Username
JLBrown
Joined
Visits
4
Last Active
Roles
Community Member
Points
11
Badges
3
Treatment Type
Avastin, 3,000mg keppra, lamictal, 4mg decadron
Treatment Stage
In Treatment Recurrence
Relationship Status
Married
Race/Ethnicity
Prefer Not to Respond
Parental Status
I am a parent with young children
I am a
CaregiverCo-Survivor
Caregiver Type
Spousepartner of survivor
Cancer Type
Brain Tumor Malignant
Cancer Stage
Stage IV

Comments

  • It's hard for my husband to sit through but it's do able. I don't think he pretreated but was almost sun burned after, on his forehead. It did make him tired so clear your schedule after. He was first diagnosed with an oglio III almost a IV starti…
  • Hello, so we're at the end of our glio journey. In summery January 2012 started and found a borderline 3 oglio/glioblastoma. Then years of bliss until the summer of '15 it came back as a full glioblastoma. He's still here but declining with a new de…
  • Hey Lenny, hope all is well. My husband is doing worse but I'm trying to prepare for certain family coming out of the woodwork. Not sure if I should give these people an ear full but I'm sure they can't handle the thought of death. So we're rolling …
  • I personally picked up that they try and preserve their patients hope for as long as they can. Which I believe is the best way to go.
  • My husband is losing his battle with a brain tumor. Phrases like "quality of life" and "palliative care" are used while they gauge your reaction unless you ask frankly.
  • I couldn't f' imagine NYC! Boston's bad but my husband can still walk decently. I'm scrambling for public assistance (which I always thought I would never need) I have physiology appointments for my 13 & 7 yr olds next week but they're really in…
  • So there was definitely edema on the MRI and some new f'in growth. They also did an echo MRI and saw even more but it could just be swollen tissue or new growth that didn't absorb the contrast. So he's left with two options, to continue with lumust…
  • Just keep strong for your kids! Due to the lack of "family" on his side I really push the idea of sticking together. They'll need each other when they get older and whether or not you like it, what you do now they will use in comparison when they ha…
  • He's home now but still having issues. They prescribed a narcotic Vimpat for seizures on top of him 3000mg of keppra and back on 4mg of decadron. Going to Boston tomorrow for eeg and MRI. Should be fun with no a.c. In my car.
  • So we're back in the hospital because of an edema (brain swelling). Gave him a high dose of decadron but his speech is still messed up. He can say words correctly but doesn't use them appropriately like saying dominoes in reference to what time it i…
  • I'm feeling your pain to. My husband had IV brain cancer and currently in the county ER because of brain swelling. I tried to get his family more involved and so far one brother (that is usually around) and an aunt came by. Doctors need a punch in…
  • @Kaitlin that's hilarious about your surgeon! He's been keppra since the beginning but this last tumor has given him issues and is now taking the 3000 mg. Not sure if it's that or the tumor that's made him more irritable and with no drive. In othe…
  • @kerrishp try and look into the cyber knife (i ment this instead of gamma knife in a previous post) radiation treatment. The beam of radiation is said to be more narrow and will less likely damage the brain tissue around the tumor area and with less…
  • All the previous doctors told her to grin and bare it. 
  • The crazy ones can be a lot of fun and brake up the monotony. A friend of mine is going through IV melanoma and some doctor with cowboy boot with snake imprints at MassGeneral said I'll take your case and have been going through immunotherapy. 
  • He's also gotten his marijuana card, in MA, and need to push him to check it out. I was looking into the CBD oils or at least THC to maybe combat the spread and maybe calm him down. He was on a lot of decadron(steroids) from the brain swelling and t…
  • We're going to push to have ours sent there. The nurse practitioner simply stated that it doesn't hurt to send it.  
  • Definitely do your homework on this topic. All the prognosis data is old, full of errors and covers to many grades and types of cancers to consider as credible advise. Also a random lady, while bring up this topic, said that sometimes a doctor can c…
  • Duke Tumor center is in one of the Carolina's
  • There's a new trial at Duke's tumor center if you wanted to look into that. We can't do the trial because his tumor is to close to the ventricle (which could cause the polio to travel down his spine). 
  • The Avastin can make you bleed easier, which is alarming! My husband has random nasty nose bleeds and if he pops pimples it can get gross. But so far it is working with him.
  • My spouse has his on the left side for Avastin treatment. His port is directed to the jugular vein and the port is on his chest. He's had it since last summer and doing well. You get used to it from what I've seen. There was recently a story on a la…
  • I got my husband a fancy dancy pill organizer only to have him scoff at it. He forgets A LOT which is a side effect for pretty much everything he has as far as meds and type of cancer. I quietly watch to make sure he's taken it but I'm not there all…
  • How did it go? My spouses counts were crazy for a while but they do eventually level off. 
  • Hello, You can always contact your doctor, I prefer email. But they are there to answer questions. My spouse has a IV brain tumor but there was also a scare with one of my children. Her pupils were dilated after birth and one doctor mentioned neurob…
  • In my experience, as a caregiver, people can't handle heavy pivotal life moments. Some people clam up, even avoid us, and some they're family. My husband has a glaring surgery scar temple to temple right in front of his hairline. We've kept it simpl…
  • Hello,My now 33 yr old husband had a Oglio III at the beginning of '12 and came back last summer as a IV. He had surgery in Aug of last year but it came back. They put him on lomustine(pill) and avastin(IV through a port) and he underwent radiation …