My friend is dying from a brain tumor.
It is a glioblastoma, stage 4 (actually they're all called stage 4). She was diagnosed last July, underwent surgery when she was told they got it all, then had a course of radiation treatments and oral chemo. Two months ago she had a clean MRI. She had another one last week and this morning was told that the tumor has returned, this time in an area that is unoperable because it is too close to the motor cortex. They told her she has perhaps 4 - 6 months left.
I have been following the "Joe and Mark" thread and the "diagnose me" thread, so I know we've had more than our share of these situations DL lately. To say that I am devastated is putting it mildly. She is a wonderful woman and has been a great friend to me. I will do anything and everything I possibly can for her, but I can hardly comprehend the degree of loss - it's like looking over a cliff. I have been in a fog all day because I can hardly believe this is really happening.
|by Anonymous||reply 57||December 4, 2022 8:03 PM
I’m so sorry, OP. My stepbrother died from a glioblastoma at age 43 and left behind two little girls - it just doesn’t seem fair. She’s lucky to have you for a friend.
|by Anonymous||reply 1||November 23, 2022 3:05 AM
I'm sorry, OP. It is a cruel disease. I agree she is lucky to have your support.
|by Anonymous||reply 2||November 23, 2022 3:09 AM
I hope she doesn't suffer.
|by Anonymous||reply 3||November 23, 2022 3:09 AM
Ignorant slob here.
Is the quality of life completely devastating if the motor cortex is damaged so it’s not at all worth taking the risk?
What would that look like?
Alive but a quadriplegic?
Is it just not an option to be alive but debilitated?
|by Anonymous||reply 4||November 23, 2022 3:17 AM
Glioblastoma is insidious. I'm so sorry, OP.
|by Anonymous||reply 5||November 23, 2022 3:17 AM
I scrolled through the Joe and Mark thread earlier today - there is so much empathy and wisdom in it. Awhile back I posted a John Updike poem in it that I thought would be meaningful to them, but it seems horrifying to me now. When you're the one looking into the void, it's a whole different ball game.
When she was first diagnosed back in July, once or twice we talked about an end of life strategy but of course it seemed totally theoretical at the time. I think there is a strong possibility she may do it, especially if she starts to lose motor functions. She has some slight tremors of one hand, which is why they did another MRI.
|by Anonymous||reply 6||November 23, 2022 3:18 AM
Sending out love and positive energy to you OP. Going through something extremely similar and…it is devastating and life-altering even if there is remission.
There is a Grand Canyon between the before dx and after, and it is rough fucking terrain. Not for the faint of heart. Strength to you and yours
|by Anonymous||reply 7||November 23, 2022 3:23 AM
I would also like to take this opportunity to post this article about the ring theory of grief. It is good for everyone to keep in mind, refer back to frequently and share as much as possible.
|by Anonymous||reply 8||November 23, 2022 3:25 AM
I can't bring myself to do much online lookup, but from what little I did today it looks like fine motor skills may go first, sometimes just on one side. Of course, as the tumor grows, anything might happen. I couldn't bear to read much more.
|by Anonymous||reply 9||November 23, 2022 3:26 AM
You might find this thread helpful, OP.
|by Anonymous||reply 10||November 23, 2022 3:27 AM
I have been keeping up with that thread, as well as the much longer Joe and Mark thread, and as I said, there is a great deal of empathy and wisdom in both of them. Except now it's personal - in a big way.
I have been on DL forever, but am not currently a paid member, so can only post outside of primetime, so I'll probably be in and out. Appreciate the kind replies above.
Life is RANDOM and NOT FAIR, kids - don't ever let anyone tell you otherwise.
|by Anonymous||reply 11||November 23, 2022 3:37 AM
OP, stupid question, but has she gotten a second opinion on surgery? Specialists in other states that would look at her case- the test results, not in person?
|by Anonymous||reply 12||November 23, 2022 3:43 AM
I have a friend from high school and he's been living with his diagnosis for over 10 years. So there is hope!
|by Anonymous||reply 13||November 23, 2022 3:45 AM
Someone I loved had something similar. Collapsed in the shower and died two weeks later on Christmas Day. Finally he was free of all the bull crap of life but went too soon at 45. Here is the rub... he worked out every day and ate the same dinner of skinless chicken breast, a sweet potato and broccoli every night !
|by Anonymous||reply 14||November 23, 2022 3:52 AM
OP, I am the OP of the Diagnose Me thread and I wanted to offer you my sympathies and maybe some advice or help for yourself (as I don't know what your friend may be looking for in terms of support for herself).
When I got my diagnosis, I found a cancer care support group which is local to my location. Wherever you are, there must be a similar type of service, I'm sure. And the reason I bring it up is it isn't only for those who are afflicted with cancer, but also for their caregivers, family members and friends who are going through loss or figuring out how to cope or help. There very well may be a support group or some kind of help or guidance for you to figure out how better to cope with what you yourself are going through, as well as how to help your friend. I've joined two support groups so far, and have also checked out several workshops online and they have been most helpful. I am hoping you both get through this as best as you possibly can. If I can offer any other help, please let me know. We are all here for each other.
|by Anonymous||reply 15||November 23, 2022 3:54 AM
Was she double boosted and then infected with covid?
|by Anonymous||reply 16||November 23, 2022 3:56 AM
r10, the OP already said she was reading that thread.
|by Anonymous||reply 17||November 23, 2022 4:00 AM
I feel for you, OP. Hang in there, stay positive for her & make good memories together…you will cherish them. Despite the awfulness.
|by Anonymous||reply 18||November 23, 2022 4:09 AM
Thank you so much, R15 - that means a great deal and is a very good suggestion. Her care has been very good - we live in a city with two large university affiliated hospital systems - she's going to the one affiliated with my nursing school, which was excellent, so she's OK there. Today's meeting was with the oncologist and the radiation oncologist, and they really laid it out pretty honestly. They told her they could see the "cavern" where the previous surgery had removed the tumor mass, but that it is now growing underneath that site and is dangerously close to the motor cortex, which is why surgery is not an option. I'm hoping that the 4-6 month projection is on the high side.
This woman is active, fit, an animal lover; she went to pilates classes and to regular exercise classes at the local Y. She has over 20 years of sobriety through AA and has never relapsed once. She also quit smoking and has never looked back Her house is always spotless; she can sew anything, and at one time had a thriving business making children's clothes; she made a bunch of cute masks when covid first hit. She has a spectacular garden in her back yard. (Unlike, I should mention, like me, who has a house full of books and a piano that has not been dusted since maybe 2018).
Thank you VERY MUCH for reaching out; I recall from your thread that this is not your first go round and it seems to me that despite some hiccups with the health care system (!!) you have maintained a calm and rational approach. I truly wish you all the best.
|by Anonymous||reply 19||November 23, 2022 4:12 AM
OP, I am so so sorry about your friend. A family member lost her 2 year old to a glioblastoma, the last time I saw her before she was diagnosed she was running and laughing being chased by her older brother all over the house, the next week her parents took her to the doctor because she was suddenly clumsy. That quick.
You are so right- life is random and unfair. Enjoy everything you can while you can.
|by Anonymous||reply 20||November 23, 2022 4:14 AM
Please accept my condolences. Glioblastomas are inherently evil.
|by Anonymous||reply 21||November 23, 2022 4:23 AM
R15: I just scrolled through your thread. That was me at R84 and R87, telling you about my friend who had just gotten a clean MRI and had beat it - that was back in September.
|by Anonymous||reply 22||November 23, 2022 4:35 AM
Are there any clinical trials she could perhaps enroll in? There is so much they're trying against glioblastoma -- CAR T cells, immunotherapy, and on and on. Unfortunately, it is the nature of research that most things don't work, but almost all successful treatments these days began with a clinical trial.
|by Anonymous||reply 23||November 23, 2022 4:49 AM
Oh no, I'm so sorry. Your friend sounds like a lovely person, and you do, as well. It's so insidious how things can turn on a dime. I cannot tell you how many times I've sat here in the past two months and thought- wow, in July I felt fine. I didn't think I'd be dealing with cancer again. A year ago this time I was across the country on a really fulfilling job for two months, something of a dream, and I felt like I had finally emerged from the whole Covid fog.
I will say that in my brain cancer support group, I have met the most extraordinary people who have been battling this for much longer than I would have ever thought possible, so a particular diagnosis and prognosis is NOT a 100% absolute. Be realistic and get the things done that you've always wanted to with her and help her to do that for herself, but know that there is more possible than what we might imagine.
|by Anonymous||reply 24||November 23, 2022 4:53 AM
I am sorry about your friend. I had a friend die in June of the same thing. Last year she lost the ability to taste and smell and thought it was covid. She never got diagnosed and thought she had long covid because she wasn't getting better. Then she had all kinds of other symptoms and got to the point where she was having trouble walking and talking. She finally got a brain scan and they found the tumor. They tried to do a biopsy and she had a brain bleed and died 3 days later. It was about a year between her losing her smell and taste and her death. She was 68.
|by Anonymous||reply 25||November 23, 2022 5:24 AM
Wishing you and your friend a wonderful Thanksgiving, OP. Let us know what you did today!
|by Anonymous||reply 26||November 25, 2022 2:06 AM
So sorry, OP. My dad died of that. Take comfort that it will be a quick and painless illness. That’s what his doctor told me when he was diagnosed and he was right. I know you’ll help her through this final journey and she’s so lucky to have you.
|by Anonymous||reply 27||November 25, 2022 2:14 AM
I am so sorry for your friend and for you, OP. I wish I had something useful to say.
|by Anonymous||reply 28||November 25, 2022 2:47 AM
She had a quiet day with her family; she has an adult son and daughter and 3 grandchildren. Her daughter Kathy has been a real champ throughout this whole ordeal so far. I did not want to intrude on their privacy today, so just sent her a brief text this morning. I attended my own large family to do, but my heart really wasn't in it. I usually watch the Macy's parade, but just didn't feel like it -
I promised myself to stop googling because what I am reading is fairly terrifying; then I keep reminding myself what every minute must be like for her. I feel very helpless, but we are going to take this one day at a time...
Thanks to all of you for the kind words, especially those of you with first hand experience with this. I hope you are right, R27....I really value the support I feel from here -
|by Anonymous||reply 30||November 25, 2022 3:25 AM
Sad to report that things are not going well - I spoke with her the day after Thanksgiving, and she told me she was having trouble getting up from a sitting position and felt like she was losing sensation in her left leg. My sister, God bless her, brought me a walker she had left over from her knee replacement surgery and I took it over to her that afternoon, along with a bag of assorted Christmas candies, mini Kit Kats, various Hershey kisses, etc. When I got there, I was a little surprised at her affect - I know she tires easily, but she just seemed...flat, like a light had gone out. She told me she had decided to sign over her car (a fairly late model Hyundai) to her son, and was worried that she would have to go to the DMV to do that.
Unfortunately, the following day, while attempting to get up off her couch, she slid down to the floor between the couch and her coffee table and was unable to get up. She was taken to the hospital and after some tests and scans was told there is a lot of edema (swelling) in her brain and would be given 3 days of IV steroids. She also strained her left ankle fairly badly and apparently is now getting some PT. They are talking about moving her to a rehab facility.
Things seem to be on a downhill slide; I am afraid she may never make it back home again, although I hope I am wrong. We have been communicating by FB PMs, although her responses are brief. The one consolation is that , other than the ankle, she does not appear to be in any significant pain - but it's like her whole personality is slowly slipping away -
|by Anonymous||reply 31||December 2, 2022 6:46 PM
(there's a 2001? film version, but here's another production)
|by Anonymous||reply 32||December 2, 2022 6:49 PM
Such a disheartening story. I'm sorry for your friend. I know two people who died from this; a coworker and a first cousin. One lived 4 months the other almost 2 1/2 years.
|by Anonymous||reply 33||December 2, 2022 6:56 PM
Cancer is a cunt. I’m sorry, OP.
|by Anonymous||reply 34||December 2, 2022 7:01 PM
My 62 year old brother died of this - 4 months from diagnosis to death. I noticed something was up about 2 years before, he seemed flat, low and making odd connections. He was treated for depression at first. Later there were some frank personality changes, loss of inhibition being one. He was diagnosed after seizures and it was inoperable. It wasn’t painful for him physically, but the symptoms - loss of bodily functions and eventual paralysis - were distressing. He mercifully slipped into a coma and died a week later.
|by Anonymous||reply 35||December 2, 2022 7:05 PM
Sorry to hear that, OP.
My father had terminal cancer and, while he tried to remain upbeat, he did have a bit of a personality shift. As soon as he was diagnosed he stopped doing most things; even things he could have done. It was like he thought "what's the point now?"
All you can do is be there for her.
|by Anonymous||reply 36||December 2, 2022 7:07 PM
r30 need something to google, then try looking up end of life and hospice care from a spiritual (not necessarily religious) or new age psych perspective. It might help you with coming to terms with it while also giving you ways to connect if she continues to decline...
music, meditation, mindfullness are the standard - SoundsTrue has youtube channel that may apply - but you might also look up adaptive exercise/movement, too, many hospitals have limited mobility exercise videos, even a few no mobility for caretakers/friends to do with the person.
When I or my mother find ourselves as patients for something serious, we often drift to gallows humour.. .much to the chagrin of everyone else around us. . . but being too serious or too positive can be just as annoying when you're laid up as when you're not.
Glam'ing up the hospital/rehab stay has its benefits too, such as designer hospital gowns and just little things to make the room more tolerable. - digital picture frames (ideally, those that don't need wifi) can help out -- if they're having memory issues, then edit the pictures (before you add to the frame) and ID the people in them.
|by Anonymous||reply 37||December 2, 2022 7:18 PM
The DL deserves better (and worse) than the twat-smear of "X is dying! Feed my need" threads.
The kitten-licking lugs stagger out of the woodwork and slobber around with inauthentic "kindness."
|by Anonymous||reply 38||December 2, 2022 7:32 PM
What a thoroughly nasty thing to write, R38. You sound like a sad and pathetic individual.
I am not here to "feed my needs."
|by Anonymous||reply 39||December 2, 2022 7:53 PM
R38 needs to get glioblastoma up his ass.
|by Anonymous||reply 40||December 2, 2022 8:00 PM
“They got it all” doesn’t mean you’re cured. I’ve heard a zillion surgeons tell this to people and it pisses me off because many, if not most, think it means they’re cured.
“We got it all. We can’t see any more cancer in your brain/lung/throat.”
The question you should ask is, “What’s the likelihood it will grow back and how soon?”
You need to know, because these fuckers are giving you false hope. You need to make plans. I hate when I hear this “They got all the cancer. We were so happy! And then…it suddenly grew back and there’s no hope. I don’t know what happened.”
|by Anonymous||reply 41||December 2, 2022 8:38 PM
R41 That's why they follow-up with chemo and radiation because even if there is no visible tumors left to remove, microscopic remnants of the tumor often are there. The issue is whether the treatments will manage them or not.
|by Anonymous||reply 42||December 2, 2022 8:45 PM
Speaking as a nurse, I don't think most physicians are trying to peddle false hope - if you did ask that question that R41 posed, I don't think you'd get many guarantees. It's just that cancer is an insidious, evil disease process, and you never know who or where or when it will strike. I am surprised, in just a small thread like this, how many first hand instances of glioblastoma posters have described - one involving a 2 year old child.
And look at someone like Olivia Newton John - a nonsmoker, nondrinker first diagnosed in 1992. Despite access to top notch care, and all of the so called advances in breast cancer treatment, it came back THREE times, in 2013, again in 2017 as stage 4. It is a horrible, horrible disease, and the worst part is that it can be so random. Just like EVIL is.
|by Anonymous||reply 44||December 2, 2022 9:42 PM
They pretty much can give you a range of when a glioblastoma will grow back, R44. Median survival rate is 15 months.
|by Anonymous||reply 45||December 2, 2022 9:52 PM
Believe it or not one of the bets things you can do to lessen your chances of cancer, or the reoccurrence of cancer, is to avoid sugar. Cancer feeds on sugar, glucose, etc, and it basically starves without it.
|by Anonymous||reply 46||December 2, 2022 9:56 PM
Sorry to hear this, OP. Best wishes to you and your friend.
|by Anonymous||reply 47||December 2, 2022 9:57 PM
R48 I've read many medical research articles on this subject, this is just a quick summary.
|by Anonymous||reply 49||December 3, 2022 1:16 AM
I don't know where you are, OP, but a very small number of cancer hospitals are doing amazing work in glioblastoma treatment. At this point, nothing is unreasonable to try.
City of Hope in Duarte, CA.
|by Anonymous||reply 50||December 3, 2022 1:22 AM
And avoid excessive gobbling of peanuts, eldergays.
|by Anonymous||reply 51||December 3, 2022 1:34 AM
Received an email yesterday saying she has had two radiation treatments, so I assume the steroids must have helped with the swelling and gave them an area to target. Have not heard anything further about moving her to a rehab facility yet. Hoping for some good news.
It's weird how having a seriously ill friend can really permeate all your thinking. I just had a mammogram this past Friday; I have always just thought of these as routine and have never been frightened. But this time I kept thinking things like "what if it was me?" - a thought I have had more than once since her illness struck her out of the blue...thankfully by the end of the day I had my results and everything is fine.
"In the midst of life we are in death" - we all live with this on some level. On this thread alone there's a 7 year old who got murdered by some delivery driver, for Christ's sake - not to mention school shootings, random celebrity deaths, crimes, etc etc etc. But as I've said before, when it hits close to home, it's a totally different thing. The overwhelming sense of relief I felt this time with my mammogram results was offset with that "what if it was me?" feeling....
I keep thinking about Michael's exit line in THE BOYS IN THE BAND when he says, "I don't understand any of it. I never have"
|by Anonymous||reply 52||December 4, 2022 4:09 PM
Trialjectory is one site that matches people with trials. I don't know anyone who has used it so I recommend it as a starting point for possible trials out there.
I'm so sorry about your friend, OP.
|by Anonymous||reply 53||December 4, 2022 5:03 PM
Clinicaltrials.gov will have everything FDA regulated and/or funded by the US government.
|by Anonymous||reply 54||December 4, 2022 6:09 PM
My sister has been living with glioblastoma for over two years—surgery, radiation, chemo, and a device called an Optune. No regrowth since surgery. Ironically, a second craniotomy last summer, because of a suspicious MRI, showed it was just scar tissue (which they removed), but which has left her with some degree of aphasia. But she’s alive and active.
|by Anonymous||reply 55||December 4, 2022 6:43 PM
My boyfriend died of this. He lived five years after his diagnosis. He was 32 when he died. Lance Armstrong's organization provided a lot of great support resources. I wouldn't believe it if you were to tell me that, but it does amazing work.
|by Anonymous||reply 56||December 4, 2022 7:55 PM
I always think of the great line from Paul McCartney--one of his later songs: "Life as it happens/Nobody warns you."
|by Anonymous||reply 57||December 4, 2022 8:03 PM