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Deterioation quickly - CNS Lymphoma - one treatment of Methotrexate

Jille123
Posts: 2
Joined: Jul 2015

Hello - I am new to this board and new to learning about CNS Lymphoma quickly as it has affected my 75 year old father.  On Father's Day (June 2015) I went to visit him and he was walking very gingerly, slow and I was afraid of him falling over.  Prior to this he has been very active.  We have gone on hikes, and we even split wood a few weeks prior this this weekend.  This was not like him.  But a couple incidents prior to this concerned us.  A normal shopping trip for him turned him back home because he couldn't remember how to get to the store.  Another incident was him falling asleep at the wheel in the middle of the day and thankfully just landing in a bunch of bushes with the car.  Finally, my mom took him for an MRI right after Father's Day since we all expressed concern.  That same day, after the MRI he was walking up to get the mail near a road.  Evidently he fell down (slipped, most likely) and some people noticed him and pulled over.  My mom noticed people in the driveway and they walked him in.  After that she called the doctor to explain what happened.  The doctor then told her the MRI showed a tumor and to get him in as soon as possible for surgery.  This created a huge scare of course for everyone.  He was brought in to the ER, and then ended up just doing a biopsy at that time. 

We went back to the doctor a few days later to talk about the issue.  He has CNS Lymphoma, it was non operational, and it has likely grown very fast.  THey were not sure if he had an MRI 3 months ago if it would have been spotted.  We asked about treatments, and they said Radiation was not an option because it could cause dementia.  He said if not treated this could be weeks to months of life left.  He referred us to a specialist in the Seattle area, who we went to see soon after that.

The Seattle doctor explained that Methotrexate would be the choice drug.  One day of treatment followed by 3 days of recovery in the hospital.  Then back again in two weeks to do it again.  This would go on for two months.

My dad walked in with a cane to his first treatment.  He was optimistic and ready to fight.  He was fairly tired after treatment and pretty much slept the whole time we visited him in the hospital.  He had a couple of seizures which they say was the result of the tumor, not the chemo.  All the sudden his left side almost looked like a stroke.  They thought it could be a stroke so they did an EEG to test brain activity.  That came out ok, there was no stroke.  So, then they say the left side weekness was likely from the tumor.  They did another MRI which showed that the chemo actually put a black hole in the tumor which meant it was working.

Dad was not strong enough to come home so he was moved to a nursing home to rehab and get stronger so he could come home then be ready for the next round of treatment.  During the time he was there he no longer could stand up, his voice became very weak and hard to understand and he basically stopped eating much of anything.  He had no interest in any of the food in the nursing home.  He lost 20 pounds during this time.  (a total of about 8 days since the first day of his Chemo).  Everytime we visited which was a total of 4 days in the nursing home we just felt he wasn't being taken care of.  People would just walk the food in and leave it on his tray.  But there is no way he could have pulled his tray over to eat it.  Someone needed to be there in our opinion, and we didn't feel the staff understood his situation.  Finally we visited one night and it was just bad, we thought it was getting very close to the end.  So yesterday, a Saturday, mom woke up and said I think I want to get him home.  I told him I would never leave him in a nursing home.  So - we all decided we would help to get him home

One of us kids called to order a hospital bed, another met my mom at the nursing home, and we got to calling hospice.  Little did we know this process is not quick and there is a lot of red tape to be the ones to make the call to bring them home.  We found an ambulance to get him home (he would not have been able to sit up in a car like normal).  Eventually we got the bed, got him home, got him set up in a room.  We all felt good.  He had a condom cathedar so changing the bag was not too big of a hassle.

The first night my mom wanted to change him and bathe him...well in that process the condom cathedar fell off and we were left with using depends which was quite an ordeal just to get on him when he doesn't have much muscle to help move his body.  He was like dead weight to do any of this.  He has not strength.  We accomplished that and got him into bed for the night.  I stayed the night.

In the morning he mentioned needing a BM and he wanted to use this commode we had.  Well, again, he has very little strength.  we got him sitting up in the bed with one leg over the bed.  My mom (who is also in her 70's) thought we could actually maneuver him to the commode.  But, he couldn't even push off the ground with his one good leg to get any movement.  I just had a horrible feeling we would all fall and be in a pile on the floor.  I called that off and called my sister and her husband to come help. 

Once we have four people we were able to get him rolled over (thank you You Tube for videos showing proper ways to move someone who is bedridden)...we got the sheets changed, got a depends on him properly and got him back tucked into bed.  The BM never came, and I guess when it does we will just cross that bridge when we get to it.

Well now all the sudden he has been eating like crazy and talking a lot more.  A lot more than when in the nursing home.  Drinking a lot as well.  He has a very hard time trying to swallow his pills, however.

Anyhow, we are all questioning next steps.  Is this a sign he will get better? Is he just happier being at home?  We weren't really told by anyone that he needed to go home for hospice, but there wasn't really any doctors checking on him at the nursing home during the few days he was there.

we have calls into hospice to begin next week, but for now we have someone additional at the house with mom to help with bathing, changing, moving him in bed, etc. 

My mom says he has an appointment in a few days to follow up with the oncology doctor.  How are we supposed to get him to the doctor if we can't even get him in a car?  Would they even do more chemo on someone in this state?  If they did chemo, would he even get better with functionality that is lost now?  My mom seems to think he could potentially get better with more chemo and have maybe another year to live.  I personally can't see him walking again after the state he is in, but maybe I'm just not familiar with how he could potentially recover over the next few days.

We are just all at a loss, jumping to get things done, but not really stopping to breath and think things through on what to do next, what we should be thinking, or what to expect.  My mom is now questioning if we did the right thing, but to see him in better hands makes us all feel better.

Just looking for support out here and maybe any similar stories that can compare.

 

 

 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Jille123,

I am sorry that your father is so sick.

I had highly malignant inoperable primary CNS lymphoma in my cerebellum in 2012 when I was 68. I was treated with methotrexate and other chemos, including high dose chemo and autologous stem cell transplant. I am now NED (no evidence of disease) since 2 1/2 years and feeling well.

Methotrexate caused fatigue, weakness, and temporary loss of appetite with me, but not as bad as with your father.

I think that only good doctors can judge whether your father should have another chemo or not.

I wish you and your father good luck!

Sten

 

Jille123
Posts: 2
Joined: Jul 2015

Thank you Sten!  So happy for your recovery - I hope you have many many more years to come.

My dad has gotten a bit worse, although we have him at home now.  He started off eating so much better at home and was talking a lot more.  He is completely bedridden at this point though.  Sadly, he now has a staph infection from the site of the biopsy on his head, and that has set him back yet again.

We are all learning the "caregivers" phase, and it is not an easy one. 

We are still hoping there will be some change in him after he fights this infection and then hopefully will get his strength back again. 

I know everyone is different, so we will just have to wait it out and see how things play out.

Jill

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