Possible Causes?

I’ve wondered the same thing. The only thing I have in common with your list is the cell phone, but not hours a day. I was diagnosed with a grade 2 astrocytoma in 2005 when I was 8 weeks pregnant with my daughter who is now 17. She was born with hydrocephalus but they told me it was unrelated to my condition. I was also told that the tumor was benign and slow growing so there’s no way of knowing when it started. It presented with seizures and since I was pregnant and it was slow growing we didn’t do any treatment other than medication for the seizures. I had a resection in 2007 and had unexpected side effects. I was paralyzed on my left side (tumor is in the right frontal lobe near the pre motor skills area). My recovery took 7 weeks in facilities. The following year, in 2008, I had another baby and was doing good (with only minor seizures sporadically) for another 9 years. In October 2016, my left arm started weakening. On Oct. 28 I went to ER and they discovered the tumor had grown significantly! I had my 2nd resection done in early November 2016. The surgery was successful and I only spent 2 weeks in intensive rehab at RIO (Rehabilitation Institute of Oregon), then had some in-home PT. I was almost back to walking unassisted when I fell and broke my ankle. I was in a wheelchair for a couple years, then graduated to a walker. I’ve been using a walker since summer of 2019. I had chemo radiation in 2017 for 6 weeks followed by 1 year of just chemo taking Temodar. I had periodic scans for years and was at 5+ years when they found some new growth. It was very small and slow growing so I had time to figure out what to do for treatment. Since I had responded well to the Temodar I decided to do that again. I’m also doing a homeopathic regimen which studies have shown to kill GBM. I’m starting Temodar round 3 of 6 this week and just had an MRI. I see my oncologist next week.

Hello Jinjee,

The formation of a brain tumor is actually quite a complicate affair, often the result of many converging factors and doctors are not certain if 4 or 5 or all factors must be present to cause a tumor, so that's why they are not being as definitive as you might like.

There is a doctor-approved Brain Tumor Guide for the Newly Diagnosed that is on line and free through the Musella Foundation. If you google Musella Foundation Brain Tumor Guide, it should take you right to the link. (Sorry this site wouldn't let me post the link.)

This Guide includes (at Appendix C that starts around Page 342) a description of the currently known causes for a Grade 4 GBM, but the formation of a Grade 2 will be very similar; the factors will just not be as potent for a Grade 2.

I hope this helps you in figuring out how this cancer invaded your life.

AaronsMom

Hello Footdoc,

I am very sorry that your mother's tumor has taken this turn. Unfortunately, a tumor that is IDH-1 unmutated (wild type/negative) almost always graduates into a GBM. Basically, when she was diagnosed with the Grade 2, it was a GBM in development. (They can take up to 7 years to develop.) Incidentally, and you may already know this, Temodar is at a disadvantage against an IDH-1 wild type GBM. Though the Temodar will do damage to the cancer cells, the cancer is able to regroup and regrow quickly after Temodar treatment. The reason the doctor is trying to manage the tumor with Temodar is because of your mom's age and the fact that Temodar is one of the least toxic of the available treatments. But there are no real set protocols for treating elderly people with GBM, so the doctor can only try and see how it goes. The kinds of symptoms you are seeing (fatigue, blood cell counts dropping like a rock, cognitive loss, mobility loss) are are very typical side effects. If your mom wants to continue fighting this thing to the bitter end, then it's right and appropriate to persist with this treatment, but if she has (ever) indicated a wish to maintain some quality of life, I would get back with her doctor and challenge him/her to better balance quantity of life with quality of life, because these side effects are not going to suddenly get any better. Again, I am very sorry for your mom and what the both of you are going through. This is a very nasty disease.

Jana

Hello Footdoc,

When it comes to Temodar, since it is an FDA approved drug, you are able to access the "package insert". For example, when you buy a cold& flu medication over the counter, you will typically find a long, folded up document with all sorts of information about it in the box. That's a "package insert." Temodar has a package insert, which the FDA provides in the box with the drug. But you probably won't get your hands on that one because the pharmacist will toss it when they go to fill everyone's prescriptions. However, the FDA makes the package insert for Temodar and many other drugs available online. Just google "Temozolomide FDA label 2022" and you'll probably have no trouble finding it. (Temozolomide is the medical name for Temodar.)

When you access that document, just look for the "adverse effects". These will be the side effects. Among the others you will see, you will find " The most common Grade 3 to 4 hematologic laboratory abnormalities (≥10% incidence) that have developed during treatment with temozolomide are: lymphopenia, thrombocytopenia, neutropenia, and leukopenia. "

A Grade 3 adverse effect is a serious event; a grade 4 is life-threatening. (similar to how brain tumors are graded.) The quantity of patients that will experience these Grade 3 to Grade 4 hematologic (blood) events will be greater than or equal to 10%, so it is neither zero nor should it be mystifying to any neuro doctor.

Concerning Avastin, it is not a chemo. Instead, it discourages the growth of new blood vessels that bring nourishment to tumors. Tumor tissue requires about five (5) times more blood than normal tissue, so suspending the growth of blood vessels to tumors can readily be seen as a potent strategy.

About 40% of people do very well on Avastin. It can "dry out" a tumor environment, reducing inflammation which can in turn reduce deficits caused by inflammation. Some people in wheelchairs have mobility restored due to Avastin If a patient develops so much inflammation that the doctor cannot control it via the steroid dexamethasone, there is little choice but to try Avastin.

For the other 60% of patients, either they have no effect one way or another or the drug becomes very problematic for them. In those cases, the drug can reduce their quality of life either cognitively or physically. The famous cancer hospital in Houston, MDAnderson, has written frankly about the reduction of quality of life associated with Avastin. They still prescribe it but only when truly warranted.

Basically, Avastin should be tried after everything else has been tried and the disease keeps growing. In such cases, Avastin has been shown to improve progression free survival, but it has not demonstrated an improvement in overall survival.

Avastin was FDA approved in 2009 and you can find the package insert online so that you can get some ground truth about the side effects and other details about the drug. Just google "Bevacizumab FDA label 2022". (Bevacizumab is the medical name for Avastin.)

As for Optune, that device has consistently shown to help manage GBM when it is used for the requisite number of hours per day. It is not everyone's cup of tea because of the logistical hassles in using it, but for those who can adjust, it is a smart addition to treatment.

As for me, I am not any kind of a qualified medical person. I have been a volunteer patient advocate for those with GBM and other gliomas since 2012, so you have take what I say and check it out with a true medical professional. But on the other hand, I can tell you what neuro doctors won't say either because they are so overworked that they don't have the time to get into the details or their hearts just hurt from dealing with so many suffering patients that they don't have good, non-toxic tools to help. Most neuro doctors I have run into are extraordinarily dedicated people and want so badly for their patients to do well that sometimes they can get a little carried away with positivity. GBM just calls for lots of compassion and understanding for everyone involved.

Hope this information helps you.

Jana

Hello Footdoc,

If the best you are able to achieve with your mom with the Optune cap is 25% (when she is not healing from electrode wounds), I would consider stopping it. It is not going to be able to do much at 25% usage and it is obviously irritating to her (on a. good day).

Optune is not for everyone and generally, it is advisable to use wutg patients that have a Karnofsky rating of about 70, which means that though she would be unable to work (if she were younger), she can still care for herself to a considerable degree. (May need help with some things.) It sounds to me like your mom would be rated a 50 ( Requires considerable assistance and frequent medical care.) A Karnofsky rating of 50 suggests that Optune has run its course.

About how brain cancer patients pass, many do just float away, but there is very often a major storm of issues and symptoms that falls to the primary caregivers to deal with prior to that. I am unable to publish the link on this site, but if you google "Musella Foundation Brain Tumor Guide Edition 12" (must be Edition 12), that doctor-approved document will have a timetable with all the challenges you might expect during a passing process. This information can be seen in Chapter 20 which begins on Page 291.

In the prior chapter which starts on page 283, there is considerable information about ethical considerations and Hospice that may be helpful for you.

As for overall survival time, the literature does say that longevity is an average of 12-15 months. To be clear, we are talking about a GBM that was diagnosed after 2021. Prior to that, the World Health Organization standards for diagnosis of GBM were somewhat muddled and included tumors for which a person could have about 10 years of life after diagnosis. They have corrected this situation so that now GBMs are only tumors with the 12-15 month longevity.

Based on what you have told me about your mom's underlying health, I think it will be a challenge to get her the maximum longevity. People who do well with GBM are those who are active, who exercise on their own, who eat well, who are cognitively "there", and who respond well to treatment with few side effects. Those who struggle to withstand the vigorous treatment for this disease and who have cognitive and physical deficits like your mom are generally not good candidates for achieving the best outcomes.

The best thing you can do for yourself and for her is to assume your mom will not do well. This will cause you to make all the arrangements and plans necessary to fit that scenario and to infuse more quality and compassion into whatever time remains.

If she manages to achieve better, then we can all celebrate, but if she does not (which is what her condition tends to indicate), at least you will not be caught in a panic situation, unprepared emotionally and in fact for what comes. When your mom was diagnosed, it produced two patients, not just one. As her caregiver, you are the other one and for that role you need to surround yourself with all the support and plans you need to deal with the very significant and sacred duty of escorting your mom to eternity. It is a big task, probably the biggest, most demanding and most important one that you will ever take on.

Jana

Hello Footdoc,

If your mom can only achieve 25% compliance with the Optune, then you may wish to discuss with her NO discontinuing that protocol. Optune works best when at least 75% compliance is achieved, otherwise, it may simply be an irritant to her with doubtful benefit. Optune is not everyone's cup of tea; some people adjust to it and others do not. One always has to be concerned about balancing quality of life with managing the disease when making decisions about treatments.

The refusal of her meds is of concern. It sounds to me as though she could be developing swallowing problems and if that is the case, you may need to discuss with her doctor switching drugs to another form, wherever possible. Another reason she could be refusing her meds is that as the disease progresses, people develop anosognosia - a cognitive disorder where their awareness of just how sick they are falls away. It's tough negotiating with an adult who is critically ill, but doesn't think so. That's one of the challenges of this disease.

While technically the NO is correct that most (but not all) individuals with GBM just float away, there is a significant storm of events that can and often does precede the floating away phase. This is generic so not everyone will experience all of these, but it can give you a sense of what a month prior to passing may consist of:

Should be enrolled in hospice and needs 24/7 care. 

Will feel safest/less anxious at home on one area of the couch or on one certain recliner. 

Even the side of the body not previously affected is now showing signs of weakness. 

Has likely become a true fall risk and must have support. Legs may just buckle at some point, and they will not be able to support their own weight. 

If still able to walk, may wander around the house. You may find them standing, staring blankly in some room in the middle of the night. May have some level of restlessness/agitation. 

May sleep 18-20 hours a day, but not continuously. Will wake, be alert for a while, potentially will have something to eat, then drift back to sleep. May have sundowner's syndrome - a condition where there is confusion over what time of day it is. 

Memory continues to lag; displays less interest in anything having to do with normal life (e.g., seems detached from family, friends, interests.) No longer interested in activities that require an attention span (e.g., will not care to watch a TV show, play a video game, or read a book.) 

Conversations become even more difficult to sustain. Word finding may be very slow or be frustrating with words ending up on the "tip of the tongue". 

Speech may become slurred; sentences may be unfinished. 

May make statements indicating they are aware of their impending passing. May describe visions involving deceased relatives or angels. 

May become childlike. Questions only needing a yes/no response work best. 

Urine becomes orange or dark (can be described as "tea-colored"). 

May experience less warning before needing to urinate. May have "accidents". May saturate the bed with urine at night and will need an external catheter to control. 

Appetite may start to be sporadic. 

Swallowing problems may increase. (It is important to not force food or drink at this point because they could aspirate the food or drink causing aspiration pneumonia.) 

As the disease progresses, so do the symptoms and urgency of care. It's a handful of care requirements for a caregiver and while hospice may be employed, if the loved one is kept at home (which is the preference of 99% of patients), hospice assistance can be quite limited, leaving the primary caregiver with their hands very full.

As for the longevity question, yes, the literature routinely quotes an average of 12-15 months from diagnosis, but that is dependent on the underlying health of the person. Those who achieve the maximum or go beyond it are typically those who can care for themselves, exercise (under their own steam), eat well, and are engaged in activities.

Hope that helps,

Jana

Jana , so what does float away mean though, is it simple as just dying in her sleep, no more breathing?

Ok thanks. Heart rate 78 - 98. We have thickener but she doesn't eat puree foods. Shes still able to eat shrimp pasta rice cereal oatmeal blueberries etc , but coughs now and then . Whats odd is she stores saliva at times and so definitely some intermittent swallowing issues with the brain going on. the sleep is erratic but feel better shes not going to die today after reading that list of warning signs. I had scheduled a meeting with a lawyer specializing in elder law but had to cancel 3 appts due to complications/hospitalizations on my Friday day off.

I wanted to ask about funeral / burial prep. I did research to get her a plot - she did 20+ years made it to Major in Army reserves and think she gets VA pension , has military Tricare for life as secondary insurance, but not easy could be time consuming to make it happen. What do you know about process when patient dies at home?

OK I understand. I have contacted Hospice before and they said do you want to fight and get treatment or do you want Jesus... my mom said both LOL. Thats why shes still getting home health therapy . So we settled on palliative care I believe wherein a nurse practitioner would f/u , but that got sidetracked with mom's trip to the hospital before Thanksgiving and since coming home we haven't f/u with Hospice . I've been caring for her doing all that leg work you described , myself and the home health aide I hired privately while I work. I'd like my mom to be bathed and changed in the least until the moment of death here at home and I would probably plan to take 2 wks off if I could predict her last few days... wouldn't want her to die while I'm working.. we are very close .

Home health has a nurse assigned to monitor , and I have a PCP ( a new one ) who plans to follow monthly.

Is it crazy to "float away" without Hospice being involved at all? I've already got the hospital bed, shower swivel chair, commode , liners , etc.

When mom was d/c from the hospital following the pancytopenia and infusion/transfusions I read a note that they would d/c TMZ unless signs of tumor progression. I really should be more certain on plans asap. Thanks for the info. I know I need to hunt down her Army discharge paperwork to proceed with funeral burial arrangements, we live 7 minutes from a funeral home. 2 hours from VA national cemetary.

As far as the Optune ? device , is it worth it to just keep applying it even after she rips it off?

thanks so much for your attention.

OK I understand. Would you give flexeril for tremors? MY mom did have leg spasms and upper body , arm spasms when in a nursing home before. It took 2-3 days to go away and they began to die down after flexeril. Later on it happened again and I asked for flexeril , eventually I was told low potassium was the culprit and they gave her K+ pills made for a horse! Its been a while since that's happened.

Im exhausted after today, I need a live in aide. Hospice is too early I imagine at this point but there is an NP for palliative Hospice care to get on board that is allowed while she still receives treatment .

Mom does sleep at the drop of a hat after taking mirtazapine at bed time. keppra is difficult to give with apple sauce, the 3x500mg tabs nearly cause her to vomit, the Vimpat is ok , Eliquis ez ...

We're in FL so not that bad, I've been in Boston for couple blizzards so 40 deg here is no prob. Have a Merry Christmas.