Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Antibiotics gonna be 2 weeks -2 moths after almost half of my mandible was resected. After that chances of my immune system recognizing cancer again are low. I had to re-start cediranib already as my dad was worried about brain swelling well subcutaneous met started shrinking immediately. Most likely just swelling going down.

Before surgery
Cardiologist checked my heart. Effusion was there, but no tamponade. Effusion returning is no surprise as tki has been on the break. Surgery was success. There most likely isnt antibiotic dose, that would both allow immunotherapy to work and my jaw to heal, so it doesn't really matter what I do.

Hi Jussi,

The need for antibiotics sound like they were necessary.
What kind of antibiotics are you on?
You could match your probiotics to help replenish what microbes are being lost so as to keep your body up to snuff to work with your immune system.

So had to had iv-antibiotics for my jaw. I am not very optimistic, that expensive jogurt would help my gut microbiome heal faster. My dad strongly disagrees.

So any positive experiences with probiotic supplements and or jogurt after or during antibiotics course would be helpfull.

arojussi wrote:So any positive experiences with probiotic supplements and or jogurt after or during antibiotics course would be helpfull.

Interesting question , Jussi .
Found this write up :)


https://www.healthline.com/nutrition/wh ... ntibiotics
Are you on levaquin ? or has a culture been performed to treat the specific infection rather than using a broad band antibiotic ?

Jussi
Hope you are feeling better !
Love

Last time culture was taken infection was basic moth bacteria. Cant treat, that without collateral damage.

it is hard to say if the probiotics make the microbiome recovery faster. As I remember, you need the Bifidobacterium longum, animalis and breeve to increase in the gut Akkermansia muciniphila and Faecalibacterium prausnitzii, so as one of the strategies it could work, but also the change in a diet with berries added in good quantity. Research the fecal transplant - it might be done locally, it might be faster.
There are some articles:
https://www.sciencedirect.com/science/a ... 641100206X
https://academic.oup.com/femsec/article ... m=fulltext

Jussi Aro
30.3.1991 - 23.8.2019
R.I.P.

Crying

Mikko and family ,

Your son was the kindest person I’ve known.
Our love and prayers to find joy and peace in the days to come .
Another young person taking too soon .

All my love ,

I am truly sorry to hear this news. Jussi was so willing to help others in their fight against asps. He will be missed. Sending prayers to his family.

Dear ASPS Community Friends,
My heart is broken that yet another precious young Life has now been lost to this cruel insidious disease. Jussi proactively fought his increasingly challenging battle with greatest courage, determination, openness, dignity, and knowledge, and he deeply touched the Lives and hearts of all of us in the ASPS Community who had the great privilege to know him through his faithful CureASPS.org and Facebook ASPS Blog posts in which he thoughtfully shared invaluable information, his anecdotal ASPS experiences, his knowledgeable personal advice and strong opinions, and his genuine special caring for other ASPS patients and their families. His special memory and the legacy of shared knowledge which he SO graciously and generously provided will Live on, and his courageous battle will continue to be a source of great inspiration for all of us who continue to fight this very challenging battle with this relentless disease. Dear Jussi, a true ASPS Warrior, was and will remain a much valued and loved member of our ASPS Family. We are all so fortunate to have been given the precious gifts of knowledge and caring that he continued to share with us in the midst of and despite all of his own increasingly immense suffering and challenges. He and his faithful presence and participation on this Board will be greatly missed, and we SO deeply share the profound grief and sorrow of his tragic loss with his devoted loving father Mikko and all of his dear family and friends. Crying endless tears, reaching out heart to heart with deepest shared sympathy and sorrow to dear Mikko and family, and holding dear Jussi very close in my broken heart and wishing him eternal peace as his invincible spirit now flies free from his ASPS ravaged body, Bonni

Bonni
Thank you.
Very well put ..
Love

I am lost for words =(
You will be missed Jussi