Glioblastoma---Any caregiver and/or treatment experiences?

[MorningGlory]

My dad was recently diagnosed with glioblastoma multiforme (grade IV with multiple tumors in more than one lobe of his brain). The initial shock and complete disbelief has abated (somewhat), and so now we are trying to plan how best to handle the remaining bit of his life. We want it to be as positive and as enjoyable as possible for as long as possible...which we understand may not be very long at all.

Does anyone have direct experience as the caregiver of a loved one with this horrible disease? I'd love to have someone to talk with about it! I've tried reading cancer support websites and forums for information, but I have not found specific help and advice. People are so vague in their answers! I guess we do that (as humans) in an effort to soften the blow, but don't caregivers need to know what might happen in order to prepare themselves mentally? Maybe it is just my personality type, but I want to know what might happen to Dad as he progresses so that I can know how best to respond. For example, all sources of information say that the glio patient may exhibit personality changes. What exactly does this mean? If he is already strong-willed and stubborn, will he become compliant? For some reason, I don't think this is the case...

If perchance anyone has been through this, I would also love to hear information on the benefits vs. side effects of treatment plans. Dad has survived both recurring laryngeal cancer and stage 3 colon cancer, so he is no stranger to cancer treatment. But this particular cancer is so different. It is inoperable and incurable. Dad's neuro-oncologist has recommended a short round of combined chemo and radiation, but we are seriously doubting if that is the wisest thing to do. I've read from multiple studies that palliative chemo can actually reduce the quality of life (while yet extending it...). What a terrible decision to have to make! Any thoughts? I would love to hear your stories!

Finally, on a self-centered note, I have been experiencing some severe bouts of anxiety since the initial diagnosis of "multiple brain tumors" (even before we learned that it was, in fact, glioblastoma). The FEAR is sometimes crushing. Thankfully, I have found some helpful tips to deal with the anxiety when it appears, but I sure would like to prevent these anxiety attacks from ever happening at all!  Is that an impossible wish? :-( 

Thank you!

 

[Lady Florida.]

I don't have any advice or experience but I just want to say I am so sorry. 

[hornblower]

Hugs.

about the anxiety, my best advice would be to see a psychologist trained in CBT and/or consider anti anxiety meds.  Even if it feels like it's taking you away from important things I think it would make things better. 

[TCB]

Jetta I am so, so sorry to hear this. I will be praying for you and your Dad and all your family. I don't have any direct experience with a loved one but I know that sometimes radiation and steroids can be used to reduce some symptoms and improve quality of life for people with brain tumors.I am so sorry you are going through this my friend!

[prairiewindmomma]

I do. PM me. I am not ready to have this convo on a public board.

[Liz CA]

My BIL suffered from this. I think if you asked his wife if chemo helped or just made him sicker, she'd say it made him sicker. We cannot know if it extended his life. He tried a variety of other treatments as well as going to a clinic in Spain. The combination of some treatments may have contributed to feeling better longer but he did have about 5 months of in home care around the clock before he passed.

I am hesitant to write more but you can always PM me if you want.

[JIN MOUSA]

First off: hugs, lots of them. 

I saw the title of your post, and a huge, heavy sigh escaped from me. My dad passed away from GBM about four and a half years ago. 

He was diagnosed in January/February of 2013. His was operable, and he had surgery in March; per the surgeon, the resection was about as successful as possible. He started radiation and chemo after that. For the first few months, the treatment was effective. Around August/September, the tumor was growing again, despite the continued treatment. We ceased treatment in early October and started hospice care in mid-October; he passed away in early November. It was simultaneously a fast and long (nearly) year. 

I was not my dad's primary caregiver. I lived about 4 hours away, and tried to see him for a weekend, at least once a month. 

My dad became very nervous about unknown things, willing to let other people do for him things that he was still capable of doing for himself. For example, after surgery, while he was still in the hospital, he had a few sessions of occupational therapy. The location of his tumor in the occipital lobe had taken the left half of his eyesight, and the occupational therapist was working with helping him remember and intentionally compensate for this. She was fairly firm toward us reminding him that his partial sight could still be effective. This was helpful, because he had another 4 to 5 good months, where he could still travel (with a caregiver) and do quite a bit on his own, and it would have been sad to see that taken from him because of his anxiety and our desire to provide relief. 

As for personality change, my dad wasn't necessarily strong-willed and stubborn, so I can't speak to that. But the challenges of my dad's personality (a little self-centered and aloof to others) didn't really diminish. By about September/October, my dad became more confused and not able to communicate as clearly. I specifically remember him trying to get information from Siri - neither of them really communicating with the other - until my dad forgot what he was trying to do and just moved on to something else. It provided a moment of levity. 

One thing to consider is to take care of all of the legal/financial stuff now. My dad had a very good friend who was a financial planner and really took care of getting everything settled, months in advance, while my dad was still able to think clearly about it. If you don't have a friend or family member that can help with this, hire someone.

This is the time to ask for help from friends and family. I know it's uncomfortable, and a lot of people may not know exactly how they can help, so try to be specific about what you need. I know it's also challenging to think about adding another thing, but you may want to consider finding a counselor for you. There are so many emotions and challenges, and having someone help you work through what you're dealing with would be absolutely worth it. 

Not sure how helpful this is, and feel free to PM me if there are more questions you have. Hugs, again. 

[teachermom2834]

Not up to a big rehashing on a public board but my mother had this and I don't mind publicly stating that we opted not to pursue chemo/radiation. Feel free to PM if you want (or not).

I am very sorry.

[Ottakee]

I have no experience with that type of cancer but my MIL passed away last week from pancreatic cancer.  We got hospice on board right away.  For us, it was a blessing.  She had 8 months from diagnosis to the end.  She stayed in her own home, living on her own until the last 6 weeks.  

I agree with working on the financial stuff NOW.  MIL redid her bank accounts and some of the other dealings so that when she passed I was able to handle everything and we didn't have to go to probate.  Can he assign a durable power of attorney now as well for when he is still here but not able to get out and/or make decisions?  That was super helpful as well as MIL was very with it until the last few days but physically could not get out the last few weeks.

One thing that is minor but was our biggest paperwork hurdle was some bonds she had from her husband who passed away a few years before.  She had never cashed them in and figured I could but they have a very specific line of blood kin they follow and it would have been a nightmare.  As it was we had to find a special bank to certify the bonds (more than a notary), etc. before they could be cashed out.

I would also encourage him to write/tell his memories, stories, family history, etc. now.

[CAJinBE]

My dad had this. He lived four months after diagnosis. He had a biopsy and surgery to remove the baseball size tumor. It returned rather quickly and was pushing on his optic nerve. We thought he would go blind, but it didn't happen. He was stubborn before surgery and just as stubborn with the rehab therapists after surgery. But he had to basically relearn how to walk and take care of himself. Once he got past that part he took chemo pills and had radiation. The chemo pills did not make him sick but we had to take precautions not to ever touch the pills ourselves. The radiation did seem to help for awhile with the recurrence. In his last days he felt great and he suddenly died in his sleep. We suspect a blood clot or heart attack, but don't know for sure. Although the end was quicker than we thought it would be, we felt he avoided suffering through the end stages of the disease. I think the surgery increased his life from weeks to months but there was a difficult month or so in there. I never thought my dad would do surgery because of comments he had made earlier in life about serious illness, but you really don't know what you'll do until faced with it. Maybe he could give the chemo pills a try. I'm so sorry your family has to go through this. 

[*LC]

On 4/18/2018 at 4:30 PM, MorningGlory said:

My dad was recently diagnosed with glioblastoma multiforme (grade IV with multiple tumors in more than one lobe of his brain). The initial shock and complete disbelief has abated (somewhat), and so now we are trying to plan how best to handle the remaining bit of his life. We want it to be as positive and as enjoyable as possible for as long as possible...which we understand may not be very long at all.

Does anyone have direct experience as the caregiver of a loved one with this horrible disease? I'd love to have someone to talk with about it! I've tried reading cancer support websites and forums for information, but I have not found specific help and advice. People are so vague in their answers! I guess we do that (as humans) in an effort to soften the blow, but don't caregivers need to know what might happen in order to prepare themselves mentally? Maybe it is just my personality type, but I want to know what might happen to Dad as he progresses so that I can know how best to respond. For example, all sources of information say that the glio patient may exhibit personality changes. What exactly does this mean? If he is already strong-willed and stubborn, will he become compliant? For some reason, I don't think this is the case...

If perchance anyone has been through this, I would also love to hear information on the benefits vs. side effects of treatment plans. Dad has survived both recurring laryngeal cancer and stage 3 colon cancer, so he is no stranger to cancer treatment. But this particular cancer is so different. It is inoperable and incurable. Dad's neuro-oncologist has recommended a short round of combined chemo and radiation, but we are seriously doubting if that is the wisest thing to do. I've read from multiple studies that palliative chemo can actually reduce the quality of life (while yet extending it...). What a terrible decision to have to make! Any thoughts? I would love to hear your stories!

Finally, on a self-centered note, I have been experiencing some severe bouts of anxiety since the initial diagnosis of "multiple brain tumors" (even before we learned that it was, in fact, glioblastoma). The FEAR is sometimes crushing. Thankfully, I have found some helpful tips to deal with the anxiety when it appears, but I sure would like to prevent these anxiety attacks from ever happening at all!  Is that an impossible wish? :-( 

Thank you!

 

I'm sorry to hear about your dad. It has been a few years, so I don't have the most current information. That said I think your dad may want to get a different doctor for one who is willing to fight for him....if that is what your dad wants to do.

 

How old is your dad? What does he want to do? What chemo is being suggeste? I am not familiar with what is considered palliative chemo.

 

There use to be a website with timelines for patients with end-stage gbm. Website seems to be gone, but found copy of part of it in different places online 

The basics

https://web.archive.org/web/20160110152605/http://www.brainhospice.com/index.html

Timeline

https://web.archive.org/web/20160324070425/http://www.brainhospice.com/SymptomTimeline.html

This one says it is the whole website, but I get a message that they are updating. http://www.btbuddies.org.uk/hospice-palliative-care/51-symptom-timeline.html

The website that linked that site also had this information from an experiened neuro-oncologist.

END STAGES FOR A BRAIN TUMOUR PATIENT.

Dianne Phillips’ former brain hospice website has been transferred to:

http://www.btbuddies.org.uk/hospice-palliative-care/51-symptom-timeline.html

Dallas (Texas) oncologist Dr Virginia Stark-Vance has made some additional

comments about the information on that website. Note that she is talking from

within the USA context, which has a different hospice and palliative care

set-up to Australia. Also, some of the medical approaches might be slightly different.

Dr Stark-Vance’s comments (19 July 2016) are:

“I agree that the information about hospice and end of life care for brain
tumor patients is extremely important, and I'm sure that many will find it
beneficial. However, I would like to add a few caveats which may (or may not) be
helpful for patients and families struggling with a brain tumor.

“Not everyone who has a brain tumor, even a very aggressive tumor, such as
glioblastoma, dies of their tumor. In my practice, the immediate cause is
often infection, commonly pneumonia. All cancer patients can become more
and more debilitated, lose strength, lose appetite, and no longer have the
immune system they once did. This is particularly the issue when someone
has been on steroids a long time. A serious infection can come on suddenly
and without warning; the symptoms are typically different than those for
patients dying of their tumor. Patients may have fever, shortness of
breath, low blood pressure, rapid pulse, and may have a weak, ineffective
cough. If the infection is in the bloodstream, patients can die within
hours, not days, making hospice preparations impossible.

“Another very common problem in all cancer patients is pulmonary embolus,
which can occur at any time, even immediately after successful surgery,
This is often related to clots that form deep in the legs where they can
be difficult to detect. A "massive" pulmonary embolus can block blood flow
to the heart and lungs instantly. It is estimated that up to 15% of all
brain tumor patients die of pulmonary embolus, and most doctors are very
mindful of this, and encourage their patients to move and exercise, or take
a blood thinner when this is warranted.

“Finally, even though this is less common, a brain tumor patient can die
during a severe seizure, or one that continues for a prolonged period of
time. I would always recommend that hospices treat brain tumor patients
with anticonvulsants for that reason, although it can be a simple
anticonvulsant such as liquid Ativan or disolvable clonazepam. Why treat
seizures in a dying patient? Seizures are uncomfortable for the patient,
and uncomfortable for the family watching the patient with a convulsion. A seizure that does not kill a person outright can still cause fractures in
the spine or other injury. When I interview a hospice to find out if they
are appropriate in taking care of a brain tumorpatient, I always ask them
how they address seizures and if they don't know, I tell them how important
this is. But I would rather engage a hospice that already has a plan for
dealing with seizures.

“Finally, it is important that a hospice always look toward making the
patient (and the family) comfortable. Pain, seizures, and suffering are
sometimes unavoidable, but by being prepared with appropriate training and
medication, a hospice nurse can calm both the patient and the family at
this difficult time.

“Again, I think the information that is included in the brain tumor buddies
website is extremely helpful, and I am grateful that you have shared this
link.”

 

 

[MorningGlory]

Thank you so much for your kind words, your shared stories, the links, your advice, and your words of wisdom. I'm sorry that it has taken me a few days to respond; I can see that I am going to have very little time over the next months to spend on this beloved forum. 

Just briefly...my dad is 78 so past the age where more aggressive treatment is considered "safe". He has in-home physical and occupational therapy right now, and they have indicated that we should go ahead and arrange for hospice. We have moved quickly to take care of several legal and real estate matters, but like @Patty Joanna mentioned, we are trying to be sensitive and not make it a death march. That was a memorable statement!

We do have several moments of humor each day (similar to those you all have mentioned). Dad often says the wrong word...even when he sees the correct word(s) in his mind. This is a very curious situation, and although it is frustrating, it has been very funny at times. He laughs then cries then sleeps all within a few minutes. Sometimes he is very talkative, and other times he is so very quiet. He is extremely anxious when visitors are there, and he is going to bed earlier and earlier each day. He is using a walker almost full-time now (he was walking three 16-minute miles just 2 months ago...).

Thank you for suggesting that he write down thoughts and stories. My brother-in-law suggested this at the onset, and so Dad is dictating letters to each grandchild. 

I may PM a few of you as things progress if I have any specific questions. The decision about chemo/radiation has not been made yet; I'm taking Dad to another consultation with his neuro-oncologist this Wednesday. 

Much, much appreciation!! Jetta