Questions about what to expect after no treatment

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Questions about what to expect after no treatment

by beingtheglue on Tue Jul 11, 2017 05:26 AM

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Hello, Sorry for the long back-story - I'm hoping to try to gain some insight here. My father in law (just turned 68) was diagnosed with a brain tumor in early April 2017 with a tumor they thought was just a meningioma. They wanted him to come back in a month for another MRI and a CT scan to check the growth. I contacted them at the end of April because he was having difficulty coming up with words (his tumor is in the temporal lobe, so this makes sense) but it was so drastic a change, I had to contact his doctors. They decided to do a biopsy. He went in for a biopsy June 9 and we found out June 14 that he has a small cell glioblastoma tumor. When he was diagnosed by the neurosurgeon (based on the lab results), he advised us that my father in law had weeks to months to live. He also said that based on the location of the tumor, taking it out would likely cause paralysis and other issues (which my FIL did not want to have happen), but his diagnosis made everything seem very hopeless. My FIL was on Dex (steroid) for the week after surgery, but once he went off of it, he went downhill fast (i.e. Comprehension was very limited, speech/remembering words was very difficult). From this site, I've read a lot of success stories, so I figured a second opinion was worth a shot. I scheduled an appointment for an neuro-oncologist - he was able to get us in right away. His recommendation from talking to the pathologist and viewing the MRI scans was that we have to focus on quality of life so he prescribed Dec again (a little stronger this time), but said he was on the fence about Avastin because it had the tendency to make people feel very sleepy (therefore really not giving him much quality of life). He said we would just have to take it a week at a time and after a few weeks, he wouldn't be able to communicate anymore. That was 13 days ago, the steroid helped for about 3 days and he's been on the decline since then (comprehension, communicating, and tie morning he lost control of his bowels - probably when he was asleep, b/c all day he went very frequently). I've seen so many posts about treatment and hope and things that doctors have done to help patients with similar diagnoses, it seems disheartening that no doctor has really talked about my FiL tumor as being something we can fight. The most difficult thing is my father in law has expressed that he just wants to die (his wife of 40+ years passed away 3 years prior). My question for anyone who can help is - I am his primary caregiver (I'm home all day with him specifically to take care of him (and my young children)) - what can I expect to see? How can I most help him? The past few days he mostly just naps all day between meals. He's probably up for maybe 4-6 hours a day. We do have hospice coming twice a week, and that's been very helpful, but I'm just feeling lost and I don't know what to expect. Do we really have weeks from here on out? Thank you so much for any replies.

RE: Questions about what to expect after no treatment

by StenE on Tue Jul 11, 2017 09:30 AM

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Hi beingtheglue,

You and your family are having a hard time.

The only thing you can do is probably to take care of your family, your FIL, and yourself.

Difficult times will pass.

Best regards,

Sten

RE: Questions about what to expect after no treatment

by eat2bwell on Tue Jul 11, 2017 01:09 PM

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On Jul 11, 2017 5:26 AM beingtheglue wrote:

Hello, Sorry for the long back-story - I'm hoping to try to gain some insight here. My father in law (just turned 68) was diagnosed with a brain tumor in early April 2017 with a tumor they thought was just a meningioma. They wanted him to come back in a month for another MRI and a CT scan to check the growth. I contacted them at the end of April because he was having difficulty coming up with words (his tumor is in the temporal lobe, so this makes sense) but it was so drastic a change, I had to contact his doctors. They decided to do a biopsy. He went in for a biopsy June 9 and we found out June 14 that he has a small cell glioblastoma tumor. When he was diagnosed by the neurosurgeon (based on the lab results), he advised us that my father in law had weeks to months to live. He also said that based on the location of the tumor, taking it out would likely cause paralysis and other issues (which my FIL did not want to have happen), but his diagnosis made everything seem very hopeless. My FIL was on Dex (steroid) for the week after surgery, but once he went off of it, he went downhill fast (i.e. Comprehension was very limited, speech/remembering words was very difficult). From this site, I've read a lot of success stories, so I figured a second opinion was worth a shot. I scheduled an appointment for an neuro-oncologist - he was able to get us in right away. His recommendation from talking to the pathologist and viewing the MRI scans was that we have to focus on quality of life so he prescribed Dec again (a little stronger this time), but said he was on the fence about Avastin because it had the tendency to make people feel very sleepy (therefore really not giving him much quality of life). He said we would just have to take it a week at a time and after a few weeks, he wouldn't be able to communicate anymore. That was 13 days ago, the steroid helped for about 3 days and he's been on the decline since then (comprehension, communicating, and tie morning he lost control of his bowels - probably when he was asleep, b/c all day he went very frequently). I've seen so many posts about treatment and hope and things that doctors have done to help patients with similar diagnoses, it seems disheartening that no doctor has really talked about my FiL tumor as being something we can fight. The most difficult thing is my father in law has expressed that he just wants to die (his wife of 40+ years passed away 3 years prior). My question for anyone who can help is - I am his primary caregiver (I'm home all day with him specifically to take care of him (and my young children)) - what can I expect to see? How can I most help him? The past few days he mostly just naps all day between meals. He's probably up for maybe 4-6 hours a day. We do have hospice coming twice a week, and that's been very helpful, but I'm just feeling lost and I don't know what to expect. Do we really have weeks from here on out? Thank you so much for any replies.

You might look at alternative treatments.  One of the first things you need to do is diet.  Cancer needs sugar to survive.  You have to cut out all the carbs because they feed cancer.  There are many other things you can do.  Get on line and google alternative caner cures and try them.  You have nothing to lose and many people have been help by changing the way they live. 

RE: Questions about what to expect after no treatment

by diazfam on Wed Jul 12, 2017 01:07 AM

Quote | Reply

On Jul 11, 2017 5:26 AM beingtheglue wrote:

Hello, Sorry for the long back-story - I'm hoping to try to gain some insight here. My father in law (just turned 68) was diagnosed with a brain tumor in early April 2017 with a tumor they thought was just a meningioma. They wanted him to come back in a month for another MRI and a CT scan to check the growth. I contacted them at the end of April because he was having difficulty coming up with words (his tumor is in the temporal lobe, so this makes sense) but it was so drastic a change, I had to contact his doctors. They decided to do a biopsy. He went in for a biopsy June 9 and we found out June 14 that he has a small cell glioblastoma tumor. When he was diagnosed by the neurosurgeon (based on the lab results), he advised us that my father in law had weeks to months to live. He also said that based on the location of the tumor, taking it out would likely cause paralysis and other issues (which my FIL did not want to have happen), but his diagnosis made everything seem very hopeless. My FIL was on Dex (steroid) for the week after surgery, but once he went off of it, he went downhill fast (i.e. Comprehension was very limited, speech/remembering words was very difficult). From this site, I've read a lot of success stories, so I figured a second opinion was worth a shot. I scheduled an appointment for an neuro-oncologist - he was able to get us in right away. His recommendation from talking to the pathologist and viewing the MRI scans was that we have to focus on quality of life so he prescribed Dec again (a little stronger this time), but said he was on the fence about Avastin because it had the tendency to make people feel very sleepy (therefore really not giving him much quality of life). He said we would just have to take it a week at a time and after a few weeks, he wouldn't be able to communicate anymore. That was 13 days ago, the steroid helped for about 3 days and he's been on the decline since then (comprehension, communicating, and tie morning he lost control of his bowels - probably when he was asleep, b/c all day he went very frequently). I've seen so many posts about treatment and hope and things that doctors have done to help patients with similar diagnoses, it seems disheartening that no doctor has really talked about my FiL tumor as being something we can fight. The most difficult thing is my father in law has expressed that he just wants to die (his wife of 40+ years passed away 3 years prior). My question for anyone who can help is - I am his primary caregiver (I'm home all day with him specifically to take care of him (and my young children)) - what can I expect to see? How can I most help him? The past few days he mostly just naps all day between meals. He's probably up for maybe 4-6 hours a day. We do have hospice coming twice a week, and that's been very helpful, but I'm just feeling lost and I don't know what to expect. Do we really have weeks from here on out? Thank you so much for any replies.

Hello, I am so sorry to hear about your FIL & your difficulties being the caregiver. It is a very hard (both physically & emotionally), stressful job & I pray that you will find the answers you seek in the community here as well as from the medical team you are working with.

As a caregiver myself, I understand your feelings. My advice after years of speaking with physicians & medical teams (and as a critical care RN) is to listen to your FIL's wishes & to what the doctors & hospice nurses are saying. Yes, there are miracle stories of people who beat the odds with novel treatments, but those individuals are usually seeking them out on their own. If you have two separate physicians recommending hospice, it is most likely the correct choice.

It sounds as though your FIL is depressed (& rightly so) however only you & perhaps your spouse as his son can evaluate whether that is the new diagnosis talking or if he truly doesn't have the desire to continue treatments. If he is lucid & of sound mind, it is my opinion that he should be allowed to make his own decisions. Hospice nurses are usually a wonderful resource for families. Sit down with them when they are there next & ask all your questions. Make a list so you don't forget anything. Get their after hours numbers & who to call with more questions. They should have tons of resources for you. They are there to not only care for the patient but for the family. If that is not the case, see if there is another hospice that you can utilize.

Many many hugs for you & your family. I pray that you  (& your FIL) find the peace & answers that you seek.

H

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