Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Jussi, I am so sorry about your seizure and the ongoing challenges in your courageous ASPS battle. Has a cause for your seizure been determined (we are still waiting to meet with Brittany's neurologist this coming week to find out if Brittany's February EEG provided any information about the cause of her November grand mal epileptic seizure). Do the doctors think that your seizure may have been caused by your brain mets situation, or possibly related to your current treatment medication? Since her November seizure, Brittany has also been taking Keppra to Hopefully prevent anymore seizures, but she has had ongoing long term night time sleeplessness, so I don't know if that problem has increased with her Keppra use. I Hope that you will find some easily treatable cause for your seizure. Take care, stay strong, get some sleep when you can, and know that my special caring thoughts, healing wishes, and continued Hope are with you, Bonni

Morning Jussi ( afternoon to you:) )

I was reading on Keppra and my understanding is vitB6 is being used with great success in aiding the side affects of insominia etc ?
However the B6 can accelerate healing ..
run it by your doctor for sure .

Hope you are getting some much needed rest .


https://www.empr.com/home/mpr-first-rep ... l-effects/

Love

Will try to stop antibiotics again tomorrow. There is still swelling in my cheeck and obviously lots of necrotic tissue, but no puss. There are obviously extensive radiation burns, but there are no clear signs of infection. This is risky, but knowing evidence proving, that antibiotic use harms immunotherapy, this is safer than continuing antibiotics.

How longs have you been taking antibiotics already - days number?

My dad first memory was 3 weeks. He is dentist and has never seen this kind of radiation damage. He is unlikely to ever feel safe aboutstopping antibiotics, as he is very scared of infection.

As stopping antibiotics will certainly increase the likelihood of immunesystem doing it`s jop against cancer I am willing to risk possible mandibular infection progressing as this infection will most likely kill me littleslower, than brain and heart tumors. I rather die of mandibular infection, than heart attack caused by epileptic seizure caused by brain tumor. Bacteria was tested it is normal mouth bacteria frora, so we should easily notice if it starts to look like infection and penicilin should clear it, before infection becomes life treatening.

I am using keppra again, but mostly when I wake up. If I take it before bed sero changes, that I will sleep.

Hi Jussi
What are your doctors suggestioning to help with the radiation burn ?

You and lucky to have your dad worry . He has your best interest in mind.

That’s what us parents do best.:)

Dang I’m so sorry that happened and is still an issue .
I like that you all have tested your mouth flora .
Is it a quick test when needed ?
It is in my opinion very important to keep tabs on for infection monitoring .

Love

Deb - he already said they tested the mouth flora and it is normal

Jussi, Sorry to hear about the sleeping issues and what not. Hang in there

Jussi
Jens thoughts are mine as well.
Love to you,

Situation is interesting. Blood pressure 124/94. Pulse 78. Subcutaneouslesion has shrunk a lot. Tumor in mandibula and gums has extensive necrosis and redness. Corsodyl relieved redness in 3 hours today, so no need for systemic antibiotics yet. No fever. I prefer to only use systemic antibiotics if there is absolutely no choice as immunesystem is most likely attacking against heart tumor and antibiotics has been pretty much proven to interact with the process. I still use cediranib as diarrhea is grade 1 and diastolic blood pressure isnt dangerously high. Of corse cediranib will slow wound healing, but it helps with necrosis associated swelling. Quoestion is if I should take day or 2 of cediranib to allow my mandibula heal. This would mean more redness as cediranib inhibit blood vessel formation.

Hello Jussi !
Is it your understanding that 2 days off off cediranib would be enough for your mandibula area to recover and heal ? Are you just beginning a new course ?
Good to hear from you .
Love

It is very difficult banance. Of course 2 days isnt enough for mandibula to fully heal. But as cediranib increases blood pressure lowering pulse. Taking break from cediranib is extremely risky. So goal is just keep mandibula from breaking or getting severly infected before immunesystem has destoyed heart tumor. Unfortunately I have no idea how long that takes.

Hello again Jussi,

How often are you able to do bloodwork ?
Are you still on Keppra ?

It is hard to say how complete the inhibition by the cediranib is, probably there is still enough of the blood supply to support the formation of the bone tissue around the treated met? You might want to try to lower the cediranib dose for 1 day and see how the blood pressure/hear rate is going to react.

At the moment I just continue cediranib. One or 2 day break is very unlikely to make any significant difference to one way or the other. Grade 1 diarrhea is just annoying, but at some point I will want to have break from it, then I take day off cediranib. At the moment decreased blood flow to my jaw bone isn't nearly as dangerous as heart tumor.