Hi all
I am relatively new to this blog and submitted my first post two days ago titled my daughters GBM.
She had a recurrence in September 17 and has remained stable since starting on some of the medications that i mentioned.
Mentally she seems well, no headaches or nausea, but has drastically deteriorated in her left side mobility.
Has anybody experienced this symptom, and if so are you able to shed any light on this condition.
Any help, greatly appreciated.
Regards
Martin
Whenever my dad started losing mobility on one side it usually meant there was some issue- usually swelling.
ReplyDeleteThank you Jenna
DeleteShe has another MRI on Monday, so i will ask the radiologist to be more specific on the area's of swelling. She has been on a lot of anti inflammatory's and has not experienced any headaches, which is the part that probably confuses me.
Thats good you have an MRI on Monday. My dad actually never had a headache during his battle with this. But, swelling caused many other problems for him. And then the Dex caused a lot of other issues. He went 11 months without a reoccurance but was plagued with issues caused by the swelling.
ReplyDeleteMartin,
ReplyDeleteMy wife aged 59 has been battling g4 gbm for 14 months.She is currently getting Avastin treatments every 2 weeks. We have had 2 mri's in the last 6 weeks, no progression of her disease and no brain swelling but she has lost the use of her right side during this time.Doctor finds no real reason for it with the exception it may be from the high dose of dex he has her on to inhibit swelling. The steroids could be part of the problem for your daughter.
Not sure if any of this helps but wanted to share.
Al Pascarelli
Hi Al
DeleteThank you for your response.
My daughter has been up and down on the dex this last month.
She was only on 1/2 mg prior to that.
Her left side has been deteriorating over the past 4 months, slowly at first then rapidly this past two weeks. About 3 weeks ago her oncologist raised the dex to 8mg for 4 days to see if it helped with her mobility but it didn't.
We have weaned her back off of the dex and have been using 200mg of Celebrex daily instead.
On Sunday she had 4 seizures but the CT scan showed no additional swelling or progression.
She has been having Monthly MRI's since December, all of which have shown the same, no noticeable swelling or disease progression.
It is so confusing, as her mobility is all but gone in this last week.
Martin,
DeleteMy wife has also lost all mobility. when I first responded our neuro onc had told me the 2 mri's 6 week apart were the same but today he gave me the old "upon further review" it had in fact grown. If I may ask, which hospital are you using.
We have been using the Robert Preston Tische Brain Tumor Center
at Duke University. We chose them as they are one of the premier
brain cancer centers in America. We were hoping for a shot at the polio vaccine clinical trail but my wife could never qualify. I am writing you from the hospital as my wife's platelets have gown down so much she is danger. We are trying to get approved to use Keytruda as that is our last hope.
Our doc went from 4mg a day to 24 when my wife started to fail physically.Let me know your daughters diagnosis and if I can help I will do some research for you. Aslo, not sure how you feel about the use of canabinoid oils but they seem to help with seizures of many kinds. We wanted to get my wife on them from the start but she refused saying the oils made her high. If you use cbd oil and not THC there will be no high.
Our cannabis pharmacist swears by the cbd oil as an anti seizure med. I really believe if we had gotten my wife on the cbd and thc we would have had a much better outcome.
Just something to think about as the standard of care with today's radiation/temodar/avastin lead to on unhappy place.
wishing you all the good health the lord can send her way.
Al
Hi Al
DeleteCan only feel your pain and frustration.
The maximum dose of Dex she has had is only 8mg, and that has only ever been for a few days on maybe 3 occasions.
The last time was one month ago and at that stage she was only having 1mg P/day. Her Oncologist put it up to 8mg for 4 days to see if it helped her mobility, obviously it didn't so i weaned her off gradually down to zero over 3 weeks.
She now takes 200mg of Celebrex as her primary anti inflammatory.
I too tried for the polio at Duke, and she was also ineligible as it was a butterfly tumor, have to admit i found them extremely rude.
We are in Australia, in a relatively small town with a surprisingly good hospital facility, unfortunately like most of the readers on this site the oncology department will not even consider looking outside of the box, not even OTC supplements. When i ask questions about the constant decline in her mobility, all i get is "disease progression", when i say the last 4 MRI's and CT scan reports concluded as, Stable, NO further disease progression, i get told, MRI's are not always accurate and can often lead to false hope.
I believe it is a combination of side effects from not only the medications that i have her on, but also the Avastin, lomustine and a prolonged period of dexamethasone.
My dilemma is, if i take her off of the self medications, and it improves her mobility, this thing will grow rapidly and it will all be over.
Have they given your wife any platelet transfusions? Being dangerously low can lead to a spontaneous brain bleed, surely they will keep her transfusions up, they even did that for my daughter in a small place like Townsville.
I will give them credit, they never let her fall below 40 and done blood tests every 2-3 days, then gave transfusions as necessary.
Yes i am looking more and more at canabinoid oils, but you have to jump through so many hoops here to get it, Australia is an illegal country when it comes to canibus.
My daughters mobility loss is down her left side of the body, and although she is generally weak all round her right side has full control and range of motion.
Is your wife still on 24mg of Dex p/day, i am still trying to understand most things with this whole thing, but 24 seems like a huge dose?
I spoke with a neuro-oncologist this morning, that suggested maybe widening the periods between Avastin or even skipping a treatment to rule out possible Myopathy. My daughter has only half the standard dose of Avastin every 3 weeks combined with an Ace inhibitor.
You mentioned your wife having 2 weekly treatments, is that at the full dose?
Are you doing anything other than standard of care? and yes Al it is an extremely lonely and unhappy place, and we wish both of you strength above all during this and have you both firmly in our prayers.
Good luck with Keytruda.
Martin
Martin,
DeleteIt is with a broken heart I tell you Deneill passed away on Monday 4/2. I am so sorry not to get back with you sooner but her continual deterioration made it impossible for me to do so. her platelets continued to drop over the past 3 weeks and even transfusions could not help. The doctors tell me they were certain she suffered from acute ITP which was the reason for her sudden demise. I hope this note finds your daughter better than before.
If we knew back when what we know now I would never had submitted her to the radiation and chemo as all it did was to destroy her.
Our fda here in the states does not allow for one to enter alternative meds (Off label Immuno treatments)unless they bring you to the brink of death with radiation and chemo first. They know there are no answers for a grade 4 gbm but still will not allow one to try other therapies prior to the current standard of care. Radiation+ Chemo. which kill you. In retrospect I would have turned away from the norm which does zero good and looked harder for people around the world who have been having sucess with alternative treatments. I truly believe the cannabinoid treatments can be very useful in much more than pain management but my wife would not agree as she said they made her feel high. Please let me know if there is any research I can do for you and report back. I mean anything at all!!!
Let me know if there is anything at all I can help with and if it is within my power I will do it. I will pray for you and your daughter that you may find the key to her full recovery.
It is an awful beast and changes its war on your brain almost daily. Stay strong, try to understand the forensics of her tumor and use those forensics as a way to find a weapon you can fight with.
God Bless You
Al