r/glioblastoma • u/Ok_Topic_5874 • 3d ago
Current Situation
Hi anyone that reads this. Just getting back from a day of appointments for my mom. Just trying to process everything. So I figured I would put it out here into the void of the internet.
My mom was diagnosed with a glioblastoma back in April. It’s located on her right side, around the temporal lobe. They were able to do a biopsy, but no further surgery was possible.
She completed 6 weeks of radiation and chemotherapy. The side effects really didn’t hit until the last week or so. Following up on brain swelling that was causing some serious symptoms, the doctors prescribed some steroids. We have been back and forth on the dosing. It does seem to help.
She completed her second round of chemo (new cycle of 5 days on and 23 days off at 2x the dose from the previous 6-week round). She handled it well enough with only the first day causing nausea.
About two weeks ago, she started on the Optune device. That has been a hard adjustment for her. The near constant connection to the device limits her mobility on top of the motor issues she is having from the tumor.
Just finished up some appointments with palliative care and the oncology team. She also received her second infusion of Avastin. Her next MRI is in about two weeks.
It just feels like it’s one step forward followed by one or two back. It’s like I can see her slipping away in real time. I just wish that there was something that I could do beyond helping my dad in taking care of her. I wish I could fix it. We had pizza and cake for my birthday after the appointments, and I couldn’t help but think that this would be the last birthday with her.
I don’t know where I’m going with posting this, but it felt like I should at least try to express it somewhere. It’s just been a tough week.
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u/kibsforkits 2d ago
Someone needs to tell her that it’s okay to not put herself through things she doesn’t want to go through. It sounds like the Optune device is lowering her quality of life. Why put herself through that when it’s not curative? All she has left is the chance for higher quality of life. Not quantity. Focus on getting her that. This is the greatest way you can love her.
If I could do anything differently, it would have been to advocate for my mom’s wishes to not do any treatments and just do hospice. She lived seven months after diagnosis, many of them in frustration and discomfort. And for what? A few extra months of uncomfortable, frustrating life? Going back and forth to doctors’ appointments and treatments that didn’t amount to anything? We didn’t feel like she was fully treated like a human being until we got to hospice, and I truly regret that we only got 4 weeks with them. There is a better way than just hammering away at this disease with treatments that have zero chance of being curative. I wish someone had told us how valid it was to not want any part of it.
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u/Ok_Topic_5874 2d ago
Thank you for your story and advice. I agree. Her doctors have been supportive in telling her that it’s her wishes that they support in terms of what treatment to do/continue. I don’t think she is at the point of not wanting to continue the Optune, but she is supported in whatever decision she makes with it.
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u/MangledWeb 2d ago
What I've been told by doctors is that some med centers are much more supportive of the Optune than others -- some places simply won't recommend it at all. Though some people feel as though it's extended their lives, the data suggest that on average it's minimal -- maybe 4 or 5 months. So quality of life is the main consideration.
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u/Austin_Native_2 2d ago
I'm sorry that you and your family are going through this. I hate that this sub has to exist.
I'm adding the following in case you can take anything away from it that helps. I understand it's hard to think about these things while going through these difficult times.
+++++
I've replied to others more than once with this post. I've been through this firsthand.
I'm not addressing the diagnosis and ongoing medical issues. Instead, my input is regarding a different side of the general situation. And as tough as it may be, handing any and all possible administrative affairs sooner than later is highly advised. It will be very beneficial if and when tougher (more emotional) times are present.
The following are potential documents to consider. Note, I don't claim to have named/listed these correctly. You'll just have to figure out what you need. The oncology office may have a social worker who can help with these ... to help determine which may be needed or useful.
- Will
- Letter of instruction -- personal instructions for after death
- Revocable Living Trust
- Advance Directive to Physicians (DADS Living Will)
- Out-of-Hospital Do-Not-Resuscitate (OOH DNR)
- Living Will -- treatments and measures you do/don't want taken if you become incapacitated
- Medical Power of Attorney (MPOA)
- Durable Power of Attorney
- Financial Power of Attorney
- Statutory Durable Power of Attorney (SDPOA)
- HIPAA -- form giving access to private medical records
As needed, list/update beneficiaries for accounts such as life insurance, IRAs, 401Ks, CDs, checking/savings bank accounts, and investment brokerage accounts. Beneficiaries (from what I know +/-) cannot be overruled by a will. They are paid out (immediately +/-) separately from a will and/or probate.
With normal bank accounts, it can greatly help to have someone else listed either as a joint owner. That, or set up the option to list a "payable upon death" or "transfer on death" designee. It just makes access to the funds much quicker than waiting for a will to probate (which can take months). You may also be able to do this with any vehicles; check with your state DMV. And don't forget about any potential adjustments for mortgages etc.
One thing a lot of people don't address enough (or in detail) is their digital presence. They forget that it can be very helpful for someone to have their username/password for various devices and accounts -- phone passcode, computer passcode, email, financial, social media, utility bills (electric, gas, internet, phone), etc.
Also, making videos and/or audio recordings may be of interest for family and friends. It'll be tough, but you may wish to script out some short ones that'll be easier to get through.
As needed, here's a similar writeup that I wrote for a single (no family) individual. I'm really just leaving this link here in case it's of use to anyone reading this post.
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u/Brandisco 2d ago
This is one of the most useful posts I’ve seen on this sub. Checking all the boxes while you can is so hard to do emotionally (it’s like admitting you’re going to be defeated - to me at least) but it’s so vital for your family once you’re gone. Thank you fellow Texan.
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u/Ok_Topic_5874 1d ago
Thank you for all of this. My dad has been working through a lot of this with my mom. My grandma and aunt live with my parents as well. My aunt has severe developmental disabilities. My mom was her guardian until this all happened. They have got that all switched over to my dad now.
As difficult as it is. This is helpful to know. Thank you again.
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u/Tricky_Hand246 11h ago
Thank you so much for posting this. My sister was diagnosed a month ago and is not going the treatment route of chemo/radiation so we don't know how long she has. She still seems healthy and I need to be sure to get this stuff done, I just didn't think of it until I saw this post as she is a stay at home mama, no 401k, etc.
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u/Igottaknow1234 2d ago
Very sorry that your birthday was cloaked with the feeling of dread. That is anticipatory grief, and when a brain tumor is inoperable and this aggressive, you are not wrong to feel the way you are feeling. I hope the optune helps your mom. You dad is lucky to have you to help out. It is a team effort to make the most of these precious days.
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u/Maddog20212021 1d ago
Sorry to hear you’re going thru this terrible cancer . My wife is going thru the same situation rite now . She uses the the optum a doing avastin an chemo once a month. She is entering her 18th month of her 12-18 month diagnosis . She her motor skills has not been great an has slowed down . She has fighters attitude, we help her get around with lifts and wheel chairs . We take one day at a time and live in the moment . She has her good days a bad . We have a good team with oncology and palliative care care team. . I know in time or soon we will talk with hospice to see what that looks like an whe. Do we enter it . I’ll be praying for you a four mom a family .
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u/ButterscotchCivil105 1d ago
Hay un grupo de Facebook para personas con glioblastoma que utilizan Optune, lo conoces? https://www.facebook.com/groups/501703052034572/?ref=share&mibextid=NSMWBT
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u/Marie7253 1d ago
On Tuesday my mom was sent to the ER for symptoms of maybe a stroke. After an hour she called me and said they found a tumor. She was sent to a Neuroscience Hospital and three days later she had surgery. They told her when they went in it was a Glioblastoma and they removed what they could but there was still some left in there. She is 61 and I still can't believe this is happening. I am venting as well because this has had to be one of the hardest things I've dealt with. She's currently in the NICU and will be transferred to Acute Rehab in a few weeks. After reading all about it and see the statistics I am questioning whether it's all worth it. The chemo and radiation. We will find out in a few weeks what the biopsy results are and her plan. I'm devastated because I didn't expect for this to happen to my mom. I am going to seek out therapy because I haven't fully been able to process this entire thing. What a horrible disease.
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u/Ok_Topic_5874 1d ago edited 1d ago
Very similar with my mom. She had what they thought was a TIA back in February. Continued to have left sided numbness and tingling. Had a bad seizure in April that landed her back in the ER. That’s when the MRI found the tumor. Right side in the temporal lobe. Secondary opinion and biopsy confirmed. She is 65.
I sought out therapy as well. My anxiety went through the roof. My grandpa also passed away a week after my mom’s diagnosis. It helped me a lot. I hope you’re able to find the same relief it provided me.
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u/Marie7253 1d ago
My grandfather passed away in July. But that was my dad’s dad.
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u/Ok_Topic_5874 1d ago
Same here. I’m sorry for your loss and all you have been going through. Again, I hope that you find the help through therapy. If I offer one suggestion it would be to follow through with talking to someone.
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u/Marie7253 1d ago
I am sorry to hear about your situation too. I hope it gets better. I already reached out about a therapist because this shit is hard.
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u/jckbauer 3d ago
Yep. This disease will make you feel powerless. You do what you can treatment wise and that's kind of it from your ability to influence things. And unfortunately it's not going to get better going forward. Eventually treatment will stop and that's when an even more intense feeling of powerlessness will come in. Had the same feeling on my birthday. Got a 2 year subscription and thought, I'm gonna have this service way longer than dad will be around.