Possible Causes?

jinjee
jinjee Member Posts: 2 *
edited July 2023 in Brain Cancer #1

I was told they don’t know what causes astrocytoma‘s. So I’ve had to develop my own ideas about what might have caused my massive grade ii astrocytoma to start growing around 2008.

Here they are…

  • living next to orange groves sprayed with roundup
  • working on the computer 8-16 hours a day for years
  • speaking on the cell phone against my ear for hours every day
  • stress / financial stress / relationship stress (abuse)
  • coming off of a really restrictive diet onto a normal unhealthy diet

Anyone else have any similarities? Or other ideas?

Love and Hesling,

Jinjee

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Comments

  • cherrymom
    cherrymom Member Posts: 1 Member

    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.

  • AmandaJill
    AmandaJill Member Posts: 1 *

    Jinjee, I have lost my husband to Glioblastoma on December 1, 2022. He was a salesman who constantly had his cell phone next to his ear. He was constantly being pushed to meet his sales goals for the year and had lots of stress that was caused by his employers required goals. Those are the two common ones, but I would like to ask you. Do you have cold sores? Or did you ever have meningitis? I do remember an episode when my husband had terrible headaches where the ER admitted him to determine what he had by doing a spinal tap and was diagnosed with meningitis. I HATE CANCER!!!!

  • AaronsMom
    AaronsMom Member Posts: 9 Member


    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

  • Footdoc
    Footdoc Member Posts: 13 Member

    My Mom was gardening a lot , live in rural setting , orange groves not super close but around. She was stressed from divorce in her 70s , and on the phone alot . She had astrocytome stage 2 , wild type , now its GBM , did radiation , temodar , L side paralyzed . Alot of complications along the way but shes stable after 12 months . Last stint in the hospital after 2nd cycle of temodar was raised to 350mg QD x 5 days , her blood work was awful , low platelets , WBC (pancytopenia) need infusion and transfusion . thank god shes ok but has cognitive loss and sleeps alot.

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    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

  • Footdoc
    Footdoc Member Posts: 13 Member

    Jana you just told me the simple truth which the oncologist didnt not tell us but probably already knows. When we f/u after 350mg of Temodar during last cycle she said "I'm scratching my head as to the cause of this thrombocytopenia" when she very well knew that was the cause. These NOs love to say that TMZ causing this is rare but reading comments on this chat its all to common. WOW... that's not right to pretend !

    Anyways you know a lot Jana , is that all through experience or are you a medical provider? Thanks .

    What do you think of Avastin? But all these drugs are toxic .

    We are however using the Novocure Obtune head device to manage tumor growth . Any thoughts on that ?

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    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

  • Footdoc
    Footdoc Member Posts: 13 Member

    Thanks Jana ,

    You sound like you know what you're talking about. My Mom seems to rip off that Obtune device every day , rarely she can keep it on for a whole day and the rep said 75% is the standard ... we are at 25% ! I have an aide watch her while Im at work and for some reason Mom developed a blister/ulcer from the heat so we are doing wound care now... I had the aide put it on recently not sure it was her fault but now we have no treatment until the wound heals.

    Lately my mom has been refusing her meds , just doesn't open her mouth to take Keppra Vimpat Eliquis Senna during her AM or PM times. I'm afraid she may have a seizure or hoping maybe she doesn't need them because her tumor has regressed - MRI is Jan 6th. I just took her to the PCP today for CBC CMP panel and she was out of it , barely spoke, shallow voice. But she is still eating meals , drinking a little water juice here and there, I keep her comfy watching TV , talking , she does show confusion telling me she saw some relatives, friends, former students on TV all the time. I treasure all our moments together every day and check on her all the time if shes breathing.

    What do you know about how these patients die? The NO said they float away .. whatever that means (sounds peaceful .. imagine dying in her sleep)

    So have you seen life span with GBM be around 12-15 months like literature I've read ? or longer ? any miracles ? Can she possibly live another 1-5 years ?

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    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

  • Footdoc
    Footdoc Member Posts: 13 Member

    Thanks Jana ,

    You sound like you know what you're talking about. My Mom seems to rip off that Obtune device every day , rarely she can keep it on for a whole day and the rep said 75% is the standard ... we are at 25% ! I have an aide watch her while Im at work and for some reason Mom developed a blister/ulcer from the heat so we are doing wound care now... I had the aide put it on recently not sure it was her fault but now we have no treatment until the wound heals.

    Lately my mom has been refusing her meds , just doesn't open her mouth to take Keppra Vimpat Eliquis Senna during her AM or PM times. I'm afraid she may have a seizure or hoping maybe she doesn't need them because her tumor has regressed - MRI is Jan 6th. I just took her to the PCP today for CBC CMP panel and she was out of it , barely spoke, shallow voice. But she is still eating meals , drinking a little water juice here and there, I keep her comfy watching TV , talking , she does show confusion telling me she saw some relatives, friends, former students on TV all the time. I treasure all our moments together every day and check on her all the time if shes breathing.

    What do you know about how these patients die? The NO said they float away .. whatever that means (sounds peaceful .. imagine dying in her sleep)

    So have you seen life span with GBM be around 12-15 months like literature I've read ? or longer ? any miracles ? Can she possibly live another 1-5 years ?

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    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

  • Footdoc
    Footdoc Member Posts: 13 Member

    Yes helps a lot. I do notice she is not responding to me as much and her BP is higher than usual.

    Im sensing the end is near reading your clues. I was hoping she can make it to Christmas, New Years and her B day 1/17 . Easter would be special but I'm wishing now.

    We have home therapy coming basically PT twice a week (she has L side paralysis)

    Shes been swallowing and chewing fine , and coughing (but thats not new)

    Shes been seeing relatives on TV for quite some time , and there are some look alikes

    I haven't bothered to get her to a lawyer and do a will and not sure if it would be valid now but she can sign her name pretty well now ... just got her to a new PCP this week and did CBC and CMP waiting for results. Her MRI not scheduled til Jan 6 . Her NO is booked until Feb so dont know what to think about that. Guess we just need to keep her meds going , nothing much else to do. But if MRI shows progression the NO should intervene no? resume TMZ but a lower dose than what dropped her platelets

  • Footdoc
    Footdoc Member Posts: 13 Member

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

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    Hello Footdoc,

    Unless there is some other reason your mom is coughing, then the coughing is the first symptom that her swallowing capability is beginning to falter. What happens is that the neural connection to the muscles start sputtering and, with that, the swallowing gets iffy.

    If you decide your mom has a swallowing issue, then there are things you can do to help like offer her foods and liquids that are more like a thick pudding. There are products available for thickening liquids to help with this. Eventually such measures will run their course.

    While the BP is a good thing to watch, I usually track the heart rate. If a person's heart rate is 90-ish, then the disease is getting ahead. Prior to passing (and a person can have an elevated heart rate for many weeks before this happens) before they pass, the heart rate may be 140,150,160. Then it will start tapering down and that's when departure is imminent.

    If she has any heritable assets - real estate, bank accounts, etc. - you need to call a lawyer 'yesterday if not sooner'. The lawyer will have to think that she is competent to execute a Will, but without one it can be an expensive mess for you and the government may take huge chunks depending on the jurisdiction. Otherwise (or even in addition), I would get her to execute a Durable Financial Power of Attorney designating you as her agent. If there are any accounts in her name (e.g., phone, mortgage, electric company) those people will not even talk to you without that power of attorney. They literally, legally cannot talk to you even if you tell them she is unconscious and in an ICU. I would push settling these legal matters to the top of the To-Do list if there are any accounts or assets at stake.

    By floating away, the NO is saying that most (but not all) brain cancer patients will pass in their sleep. What the NO is not saying is all the stuff that happens prior, including about 8 days where the loved one does not eat or drink anything, may have a hard time breathing (because of the high heart rate) and will need oxygen, will be totally incontinent, etc. The NO is making it sound easy, which it is for the person, but absolutely not for the caregiver. It is often physically and emotionally demanding at the highest levels for the caregiver.

    If the MRI event on 1/6/23 does reveal progression, it might not be clear that it is actually disease progression. The disease could have expanded due to the effect of treatment, so it would not be until the subsequent MRI that the NO would be able to clearly say that the disease is progressing, so maybe the NO will not believe it is appropriate to intervene. (Yes, it is very frustrating.)

    As for as continuing the meds, that is dependent on her blood test results. It is neither legal nor medically ethic for a doctor to prescribe chemos unless the minimum blood cell levels are met. If they are not met, the NO may delay chemo treatment.

    Sorry this is all so complicated. This disease and its course is hard and overwhelming at time.

    Jana

  • Footdoc
    Footdoc Member Posts: 13 Member

    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?

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    Hello Footdoc,

    If she is able to eat "normal" foods then her swallowing capabilities are still pretty much intact. You'll know when her swallowing gets to be a real issue because she will start squirreling medication in between her checks and her gums. At that point, you may want to have her open her mouth for you so that you can confirm she swallows her meds.

    Sounds like she may have some military benefits coming beyond those you have mentioned, like perhaps some amount of an allowance for burial. I would get with a representative of Veterans Affairs and see what sort of support she would be entitled to. If you contact the funeral director at the national cemetery nearest to you (or you can always call the National Cemetery Scheduling Officer in Arlington, VA), they should be able to tell you what they can do for your mom. You may need to get your hands on her discharge paperwork to get good answers from them. But I am thinking if you want to go this route, there will be some allowances and she should be eligible for interment in a national cemetery.

    The process of passing at home is physically demanding on the caregiver, but with rare exceptions, all the caregivers I know who have done hospice at home were very grateful they did it that way and would not hesitate to do it again. 99% of people prefer to pass at home and though I cannot prove it, I think they live longer and have less stress/discomfort if they are at home. That said, it is not always possible to conduct hospice at home because the loved one might have had some sort of a health calamity (e.g., a serious stroke) that makes them too delicate to be handled at home. But except for those infrequent situations, most people can pass at home as long as the caregiver has the strength and extra help to take on the responsibilities.

    Usually, what happens is that there is an MRI where the doctor is certain the disease is in its full rampage and cannot be controlled any longer by available medical resources. When that happens (or when the patient requests that treatment be stopped), the doctor will recommend Hospice. Upon that recommendation, then the person is enrolled with a local organization specializing in hospice services. Resources like a hospital bed, wheelchair, package of medications, etc are set up in the home with a schedule of visits from hospice personnel.

    For example, the loved one will need to be cleaned/bathed to some degree daily, but this is a challenge for bed-ridden hospice patients. Most caregivers can do something of a cleaning of a bed-ridden person, but a hospice tech can be schedule twice per week to come in, help change bedding and do a thorough cleaning. That gives you a general idea of how it would all go.

    While the caregiver at home will have the lion's share of the work, help will be made available from hospice staff which will periodically visit to check on the patient and ensure the caregiver has the training and supplies they need to do the work necessary. As needs increase, hospice staff presence can increase. For instance, when it is evident that passing is imminent, a hospice nurse may stay at the house 24/7 to be there to help.

    Once the person passes, the hospice nurse will handle communications with a doctor certifying the passing (for legal purposes) and the hospice will, if requested, contact the appointed funeral home for transferring the loved one to the funeral home. (The person cannot be transferred until the doctor has certified the passing in most jurisdictions. This all takes about an hour or so.)

    Hospice would also assist with disposal of any controlled medications onsite, as there likely will be those for comfort care. Hospice will arrange for the removal of its equipment that were delivered to the home at or after enrollment in a day or so.

    While I am describing this process from a rather business-like, logistical standpoint, I cannot emphasize enough what a poignant, sacred and important event it is to escort one's love one at home in this way. But again, it is a great deal of work - more than what most expect - and the condition of the loved one is a factor in determining if hospice at home can work, but if everything comes together, it is an experience like no other and no caregiver I have ever encountered has regretted doing hospice at home.

    If you have other questions about the process that I did not cover, please let me know.

    Jana

  • Footdoc
    Footdoc Member Posts: 13 Member

    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.

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    Hello Footdoc,

    In theory, a person can assist a loved one through the process of departing without a hospice organization. In theory. Up to about 50 years ago, people did it in this country all the time because there weren't hospice organizations at all.

    However, what you would need, for the sake of your mom's comfort, is access to a doctor specializing in hospice 24/7 because the process can involve situations that cannot be predicted. For instance, at some point, she may develop tremors as the neural pathways to her major muscle groups start shutting down. These tremors are often non-stop and can be significant. They are controllable with the application of certain medications that in no way would be available without a prescription, and the average PCP is unlikely to feel comfortable in prescribing them. A hospice doctor knows what is going on, would factor your mom's weight and medical history and prescribe an appropriate medication.

    And that's just one thing that can happen. Another that can happen, albeit less frequently, is that a loved one starts seizing over and over again - in the middle of the night - and they can no longer swallow their Keppra and Vimpat. These are special circumstances for which you would need a special doctor urgently who can get the right treatment to ensure your mom's comfort as quickly as possible.

    So, while in theory hospice can be done without a hospice organization, there is that factor of ensuring comfort care at the drop of a hat for whatever may occur. There is also the issue after the passing of getting a doctor to certify the passing and jump that legal hurdle promptly in order to avoid delays in having her transported to the funeral home and receiving the care she will need at that point.

    As for the Optune device, I would get with the doctor. Your mom is definitely using it sub optimally. To really get benefit from Optune, she should be using it at least 18 hours a day. Maybe one solution (if possible) is to have her wear it when she is sleeping. That might help rack up some hours. With her using it only 25%, the benefit is pretty iffy, so it sounds like a toss away to me, but the authority to really say that is the prescribing doctor. I would go to the doctor with that usage and get instructions from her doctor about continuing or not with the Optune.

    How you and yours are staying warm and safe in the storm.

    Jana

  • Footdoc
    Footdoc Member Posts: 13 Member

    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.

  • AaronsMom
    AaronsMom Member Posts: 9 Member

    Hello Footdoc,

    The challenges during the hospice period are different and more all-encompassing, so though flexiril might be used, it is not the best class of drug. Flexiril just treats muscle spasms, but there is another class of drugs - benzodiazepines that are the more typical go-to by hospice doctors because not only do they treat the muscle spasms, but they can aid in reducing anxiety and seizures. Hospice medical personnel are very focused on comfort care and do a good job of it by choosing medications that carry the most benefits.

    As you saw with the muscle spasms taking 2-3 days to calm down, the minute your mom starts exhibiting any unwelcome symptom, raise the red flag with her medical team. This is especially true of pain. Nerves that are allowed to transmit bad messages can then take a while to cool off because they become stubborn, so the sooner those messages are shut down, the better.

    Yes, I can well imagine that a live-in aid would be of great value. I don't know of anyone who can tackle these demands on their own. Caregiving for brain cancer is thought by most to be the #1 caregiving challenge.

    As for the problems in administering Keppra (and any other problem meds), you might want to get on the phone with the doctor and discuss the problems you are having in administering these meds. Many but not all come in different forms like liquid, sublingual or suppositories and maybe a different delivery form might help giving these important meds to her.

    Hope you and your mom have as wonderful and meaningful a Christmas as possible.

    Jana