An update

And feel like I need to update most of you since many of you responded earlier and sent me private messages. Thank you!

These past two weeks have been exhausting. No change at all in his condition. Decadron did NOTHING for him. His vertigo symptoms seem to have gotten worse. Yesterday morning he didn't want to go in for his Avastin treatment. Told me he felt like giving up. He is so tired of living like this. Apparently he spoke with his oncologist and she wanted to have a mri done of his spine, because of his neurological issues and weakness and to rule out the extreme and rare possibility of this cancer spreading to his spine. I think when she told him that, he kind of shut down.

Yesterday was a tough day for sure. He quit the Decadron Monday as it was not helping him at all. I finally, with the push from  my mom, contacted his oncologist and demanded to have him either admitted to the hospital or seen by her. He can not be left alone as he needs to hold on to someone's shoulder to walk. A cane is no longer an option. He has been suffering from extreme vertigo like symptoms and complains of numbness on the left side of his face and in his fingertips. I question whether this has anything to do with the  edema seen on the right side of his brain?

I put my foot down today and made him go to see his oncologist. With the help of a close friend we loaded him up and made the appointment. She prescribed a medicine for vertigo. He said no on the MRI of his spine. We will see a neurologist next week. Bloodwork was done and am not sure how all those numbers turned out.

If his vertigo symptoms do not subside in 3-4 days on this medicine then clearly there is something else going on.

I will add that when he said he no longer wanted anymore tests or treatment done it kind of hit me. I have to honor his wishes yet, I don't want him giving up. However his quality of life has been crap lately. Sitting in his recliner all day??? Really? Having me wait on him all the time? Peeing into a pitcher because he cannot make it to the bathroom in time? Falling down in the bathroom? It is emotionally and physically exhausting for me. My heart breaks for him. Thankfully we have had family and friends over lately to visit or keep an eye on him if I need to run errands, take my kids to their sport activities or to just take a break, even if it is to drive for a bit with some music, not caring that fuel is so unjustly expensive right now!!!

I appreciate all of you on this board sharing your stories and experiences. I have been on this board for 3 1/2 years. I have seem so many come and go quietly. I have learned so much from all of you. For those new to this board, you are welcomed with open and loving arms!!!!

Before my son was dxd with leptomeningeal carcinomatosis there was enhancement everywhere around his brain. At first they kept tellin us it was some kind of infection or meningitis. They did 4 spinal taps overall and couldnt find the exact reason for the enhancement. Thats when we started going to the Mayo clinic in Jax Fla where they dxd him with the spreading of cancer (lepto). He did an additional 15 rounds of radiation along with avastin and temodar. Seems like he went from playing football in the yard to a wheelchair in less than a week.

Anyways i feel your pain and of course im no doctor but it seems if it were cancer spreading, it would show up on a regular MRI. Its my uneducated guess that if it spreads to the spine, the only way it can get there is through the spinal fluid in which it would show up around his brain too. Our NO explained it as patches of cancer in no particular order or place, just everywhere. Kind of like leaves on a pond. If there is another way for the cancer to spread to the spine, im not familiar with it. Praying for your family

matt

So sorry that you are at this point.

I also think that your husband's symptoms could be the results of a leptomeningeal metastasizes.  My husband developed this about 9 months before he died.  They usually will not do an MRI of the spine unless they are showing clear symptoms of a spinal metastasizes (pain, etc...)  The lepto mets are cells in the CSF fluid which may or may not cause a spinal met.  Here is a link to an article about the lepto met:

http://www.ncbi.nlm.nih.gov/pubmed/19267111

While it is great that your husband has made it 3 1/2 years with GBM, it also increases the chance that he will develop rare complications such as the lepto met.  See the last sentence of the conclusions of the aricle:

As the local control of primaryglioblastomamultiforme has improved with recent therapeutic advances, distant metastasis from high-grade gliomas is likely to become a more common clinical problem and such patients need to be included in clinical trials to evaluate new therapeutic approaches.

My husband also got tired of suffering and living with the disease.  He gradually weaned himself off of everything, including dex.  "What is the point of living longer if I am not myself", he would say.  My husband was a brilliant PhD biostatistician and I had to respect his wishes. 

I am glad that you have some help; I would consider hospice.  Hang in there--it was absolutely the toughest time of my life.  Do whatever you have to do to relieve stress.  For me, at the end, it was just taking walks outside in my neighborhood.  God bless,  Sally

im so sorry...

im concerned he just stopped his decadron.  it could make things much worse...  :(

and my husband is actually going through much of what yours is...  one thing you may want to consider - and that led to much of my husband's problems, is that his antiseizure meds were making him weak and having vertigo to the point he keeps falling, needs help walking, needs the commode near the bed, etc...  they lowered his dose but it still needs to be lowered...

and yes, the right side edema will affect his left side (also like my husband.)

i wish you all the best and hope things improve...  it truly is a rough road...  and it sucks for all of us on this road.  :(

please keep us posted!

sarah

On Feb 21, 2013 3:57 PM loveiseternal wrote:

So sorry that you are at this point.

I also think that your husband's symptoms could be the results of a leptomeningeal metastasizes.  My husband developed this about 9 months before he died.  They usually will not do an MRI of the spine unless they are showing clear symptoms of a spinal metastasizes (pain, etc...)  The lepto mets are cells in the CSF fluid which may or may not cause a spinal met.  Here is a link to an article about the lepto met:

http://www.ncbi.nlm.nih.gov/pubmed/19267111 "" target="_blank" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmed/19267111 " target="_blank" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmed/19267111

While it is great that your husband has made it 3 1/2 years with GBM, it also increases the chance that he will develop rare complications such as the lepto met.  See the last sentence of the conclusions of the aricle:

As the local control of primaryglioblastomamultiforme has improved with recent therapeutic advances, distant metastasis from high-grade gliomas is likely to become a more common clinical problem and such patients need to be included in clinical trials to evaluate new therapeutic approaches.

My husband also got tired of suffering and living with the disease.  He gradually weaned himself off of everything, including dex.  "What is the point of living longer if I am not myself", he would say.  My husband was a brilliant PhD biostatistician and I had to respect his wishes. 

I am glad that you have some help; I would consider hospice.  Hang in there--it was absolutely the toughest time of my life.  Do whatever you have to do to relieve stress.  For me, at the end, it was just taking walks outside in my neighborhood.  God bless,  Sally

Aw man, thats just plain scary that theyre expecting this to be a more common problem. as if having a gd tumor isnt bad enough....Atleast theyre considering having clinical trials for this added curse. The additional radiation my son recieved did the trick so far. For how long? who knows, Im just glad to have more time with him. Most people are not able to recieve more radiation when the lepto creeps into their lives. Guess we were lucky (thats so hard to say)

matt

I know alot of you have asked if he is on Decadron or why he is not on it. The thing is he hasn't been on it for nearly 2 1/2 years. Occasionally he would take a miligram or or 2 here and there if he was experiencing joint pain or having  a tough time walking, usually after an Avastin treatment. He has right side weakness from where his tumor was removed(left side) and from radiation damage. So his walking is already compromised and add in the vertigo and what a complication.

If 4mg of Decadron twice a day for 5 days was not helping then I am not sure what would. He is now on Antrovert a medication for vertigo. He seems a tiny bit better today, yesterday being terrible for him. And even though I said he seemed to be turning the corner at the beginning of the week I am not holding my breath on today's little bit of improvement. I swear this is a day to day thing and sorry if I sound like I am losing hope, but I guess I am emotionally tired. This is such a roller coaster.

Since he has become immobile for nearly two weeks he has become very weak. 3 weeks ago he was working out 2-3 times a week in our local health club. Even if he gets over his current health obstacle I know it will be tough for him to build up his strength again. And we have a trip planned to Mexico in a month. Whew. Lot's of work ahead!