Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

[D.ap]

So glad to hear !
Was thinking of you Jussi .
Here's to a speedy recovery.

[Jorge]

Glad to know the surgery went well.
Wish you a speedy recover!

[arojussi]

Thanks

[arojussi]

So my brainsurgery experience was quite pleasant one. Surgeon listened my fear of bleeding before surgery. He was planning to go in behind the ear and go around tumor with as wide margin as savely possible. In brain metastases edema around tumor often doesnt contain cancer cells unlike glioma. So I dont think it matter that he left little necrotic area behind as long as all tumor tissue came out. He is optimistic that if any of my other bigger tumors causes problems surgery can be considered again. Very good news. After surgery time in the icu was tough. Pain killers always made me vomit. Antinauseameds only helped a little. Icu is always unpleasant, so thank god I was there only one night. Next evening first day after surgery all my neurological sympltoms lesened. I am no longer needing dexometasone.

[arojussi]

So back to present problem. They did kktt scan from my teeth and even that couldnt give certain answer about what mandibular lesion is. But good news is that there is only one. It is about 2 cm pressing soft tissue. It is still relatively easy to cure. (Cryoablation, srs or surgery.) Problem with cryo is that we are in a hurry so if we can have lesion surgically removed here in Finland soon I think we should do it. Srs for mandibular met is worst option as far as I know. With radiation there is risk of necrosis or tumor recurrence. In both of these situations I will need surgery anyway and radiation will make surgery more complicated, so why waist time when we can have surgery now. There is still tiny change that lesion is just some kind of infection, but I dont have any symptoms to indicate infection. Pain is still tolerable, so tumor isnt growing very fast yet, but this can change in any minute. Biopsy from this lesion would be very dangerous, because asps bonemets are very vascular plus it doesnt matter what it is. It is destroying my jaw bone. Even if it is infection treatment is surgery to remove infected bone and stabilize jaw. My dad is dentist and I know that metastasis can look like infection in jaw, so We are really certain that this is asps met. My dad doesnt think I need segmental mandibulectomy. Segmental mandibulectomy would be relatively big surgery, needing plastic surgeon, ear nose and throat doctor and dental surgeon. If we can have surgery soon I might survive with lot smaller operation. If I am lucky I dont even need bone graft. So my dad is trying to find somebody to perform surgery for my mandibular met as soon as possible. If we cant have surgery here in finland, then we hope we have time for cryoablation. After met in mandible is dealt with i think gammaknife in Shanghai will be next.

[D.ap]

Hello Jussi
I'm glad to hear that you are able to get off the dexo however if you need it use it.
The mandibular tumor has been there since when ?
So the MRI wasn't showing it in your jaw bone ?
Have you all been discussing your next Med treatment ?
Andrew Ward''s son , Auz is on a trial with Atezolizumab

http://www.cureasps.org/forum/viewtopic ... =Auz#p8165
You may of already checked into it?

https://clinicaltrials.gov/ct2/show/NCT02458638

Finland
Helsinki University Central Hospital; Dept of Oncology Recruiting
Helsinki, Finland, 00029

It seems to work well in bone tumors of the spine.
Also , Joshua's skull tumor that was 1mm shy of a centimeter , disappeared while on Opdivo .

I'm so happy to hear that you are feeling up to sharing your experience here! Here's to continued wellness

[arojussi]

Mandibular tumor has been there since april. Mri showed it, but we did special x-ray from my teeth. Dental surgeon believed that there was no sign of tumor. Possibly some kind of mild infection. No need to do anything. Lesion has grown little singe then. I was optimistic that, tyrosine kinase inhibitors and high doses of radiation for my brain could have caused some kind of osteoradionecrosis/infection in my jaw, But if this would be the case I would have elevated crp fever and more pain. So tumor is most likely explanation. I most likely dont need cortisol anymore. Surgery removed my only symptomatic brain tumor. Unfortunately if whatever is destroying my mandible doesn't get treated soon I will need opiats for jaw pain and I wont be able to eat. So like my symptomatic brain met this bone met also must be removed, or my duality of life will go down.

[arojussi]

My next medical treatment is most likely sutent. If patology of my brain mets shows inflammation, then Maybe we suggest more pd1-inhibitors in combination with sutent, but first surgical incision must heal 2weeks. And because I need surgery for bone met it might be long time before I can continue systemic treatments. I would love to start sutent before gamma knife, because tki normalizes tumors vasculature making it more vulnerable to radiation and tki also helps with brain swelling. Of course my remaining brain mets are small, so swelling shouldnt be as big issue as before.

[mikko]

I´m painfully aware of how things happen with this mandible lesion, so it went like this:
13/4 2017 MRI ( we got the results 21/4 17); no clear progression of the disease, one suspect new brain nodule 1-2 mm, edema in the spongious bone of mandible in the region of d.38 ( wisdom tooth), consult a dentist.
2/5 2017 OPG taken, statement from a dental surgeon ( with working experience over 30 years); no sign of metastasis or osteolytic activity
9/5 2017 intraoral X-ray taken from the region d38. Statement from that same dental surgeon and one other dentist; periapical osteitis d 38, extraction if becomes symptomatic.
20.6.2017 MRI; mild progression of the disease, lesion in the mandible has grown a little, if no infection found it can also be a metastasis, two new brain nodules.
6.7.2017 I insisted a cone beam CT to be taken of the mandible and the results were as Jussi already posted

[D.ap]

Jussi
What about Bisphosphonates meds? For bone loss ?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704135/
Also our dentists remove our wisdom folks wisdom teeth for that very reason of possible complications of jaw teeth issues ?

My dentist suggested I have my wisdom teeth removed, but they're not causing problems. Is wisdom teeth removal necessary?

Answers from Thomas J. Salinas, D.D.S.
Wisdom teeth — the third molars in the very back of your mouth — may not need to be removed if they are:

Healthy
Grown in completely (fully erupted)
Positioned correctly and biting properly with their opposing teeth
Able to be cleaned as part of daily hygiene practices
Many times, however, wisdom teeth don't have room to grow properly and can cause problems. Erupting wisdom teeth can grow at various angles in the jaw, sometimes even horizontally. Problems can include wisdom teeth that:

Remain completely hidden within the gums. If they aren't able to emerge normally, wisdom teeth become trapped (impacted) within your jaw. Sometimes this can result in infection or can cause a cyst that can damage other teeth roots or bone support.
Emerge partially through the gums. Because this area is hard to see and clean, wisdom teeth that partially emerge create a passageway that can become a magnet for bacteria that cause gum disease and oral infection.

[arojussi]

Bisposbonates are sometimes used for bone tumors. I highlight word tumors here. I only have one small bone met, so idea of systymic medication for my bone loss is unreasonable. Bisposbhonates are very toxic. In long term they will make all my bones very fagile. So we should treat my only bone met locally like we did with my femoral met 7 years ago.

I am awere of possible infection in wisdom tooth, but based on my current clinical status tooth infection is only wishfull thinking. It is not realistic idea. So we must find local treatment for this mandibular met soon. If it keeps growing it will cause big problems soon even if it not a met. So lets have surgery to remove it and lets patology figure out what it is.

[Jorge]

Hi Jussi,
Agree with you that the mandibular met must be treated soon or the problem will be harder. Have you consider Cyber Knife for the mandibular met?
Seems like your treatment schedule would be very tight. The brain mets need to be treated ASAP to reduce the side effect from Gama Knife. And you plan to ablate the rest big met in the brain as well?

[arojussi]

Yes only real problem here is time. Yes I considered cyperknife, but as you know we would need very high doses to kill asps met. This would cause severe damage to healthy bone and radiation necrosis would have to be treated with surgery in the future. That is why I rather treat this met with surgery where bone damage is easier to control and manage. My brain mets have been there whole year and only grown few mm, so I believe we have time to treat my bone met curative before gamma knife. I always heal fast and I just need to be in semi reasonable shape for gamma knife.

[arojussi]

All big mets were treated with maximal stereotactic radiation year ago. (My radiation doses were 30 gy to smaller mets and 20 gy to biggest ones.) All these tumors look dead. So we just going to observe them for now. If they cause symptoms or grow I will need other brain surgery or Litt or high intensity ultrasound, but if one or few of them grow they can be treated.

[D.ap]

Morning from here in US
Would the surgery be thought of as exploratory surgery if say they found it to be infection instead of a tumor and will you be on a specific antibiotic as I think bone infection require more powerful antibiotics?
All questions to maybe run by your onc/ surgeon ?
Sounds like if it is a tumor then a reconstructive surgeon will be involved ?