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

[D.ap]

Hi again Jussi
I was reading from the beginning of your posts and I see your main tumor was in your shoulder ?
What size was it ? Just curious as your leg/femur was discovered to be 5cm in 2010? Which prob means it had been there for awhile undetected .
Had it shown to be bone penitrating ? And your shoulder had it pushed thru bone?

[arojussi]

My primary tumor was inside my latissimus dorsii muscle. No bone involvement in my shoulder just tumor inside muscle. It was 7 cm as far as I can remember. My bone met was inside my proximal femor 5 cm width about size of an egg. It was there long time at least 6 moths or longer. It was detected with abdominal ct during my 6 moth scan. I had hoped it was just stain injury, so I ignored it. It was pure luck that bone met didn't kill me. It was contained inside bone, so surgeon was able to get clean margins.

[arojussi]

Angiography tomorrow. Surgery for mandibular met later this week. I hope we can embolise some blood vessels going to met. Blocking some biggest blood vessels would eliminate bleeding risk making surgery completely save and giving some change of clean margins. If margins aren't clear we will have to do bigger surgery later, but removing at least some of the tumor will give us time to treat all my brain mets first and then we revisit mandibular met with a better time.

[arojussi]

Over 80 percent of tumors blood supply was cut out. So I quess bleeding isnt realistic fear. Surgery day after tomorrow. Surgeon feels cpnfident.

[D.ap]

Hi Jussi
I'm not following up on the 80% cut out statement ?

I've found an article on anesthesia to consider to not promote metastic disease .
It's my understanding that some surgeries can cause an immune surpression which we know is not a constructive move especially with ASPS.
The use of the right anesthesia and pain killers should be evaluated.

It's worth a read
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601457/

[Olga]

Debbie - Jussi just had an angio procedure called embolization to block off the blood vessels feeding this met in the jaw (and the fact that this unknown nodule was highly vascular pretty might confirms that it is an ASPS met and not the infection/bone necrosis). He is saying that they blocked 80% of these vessels, in order to reduce the severe bleeding when the bone met is resected.
Re. the problem that general anesthesia drugs like Opioids used during/after the surgery are found promoting distant metastasis spread. It is a subject that is under the discussion for awhile but nothing really can be done not to use it. There is usually a very limited choice of drugs that can be used for the surgery and it is hard to avoid using them. The same situation is with the steroids and with the low white blood cells caused by chemotherapy boosters and with the surgery itself - they all can promote the tumor growth by different routes but there is no way to avoid them. So I am not sure why are you talking about it now?

[D.ap]

Didn't understand embolized procedure happened this far ahead of surgery . I thought just the angiogram was being performed today.

I just felt like if there were options for pain control and sedation , then a person could choose the less promoter of possible immune suppression Med .

I sure wouldn't encourage any one to do without a certain Med if it helped them get well and feel more
comfortable . Maybe make it a goal to get off of them sooner ,if the doctor feels like it's a good idea.

[Olga]

This is understandable, it was not that obvious from Jussi post that the attempt to embolise the majority of the vessels is going to be done, it is pretty uncommon thing to do although we had few patients with their mets treated the same way, when the significant bleeding was expected. It is a very careful approach of the surgeon here and I like it, they performed an angiogram first to see if the nodule is vascular and blocked most.
Re. painkillers used for the general anesthesia - I am not sure if any of them are that less damaging, probably just less researched, did you see any alternative regimens discussed or proposed? It is also important to understand that pain itself is a promoter of tumor angiogenesis.
The idea to get off these drugs is the right one, but it is a balancing act. The pain has to be well controlled by so many reasons incl. recovery/functionality training process.
Jussi - try to add some weight till the surgery, few days of over-eating can produce couple of kilos (I swear, I checked it myself).

[mikko]

I asked for the embolization and the surgeon agreed

[D.ap]

I agree with Olga and I think that's an awesome idea that you had , Mikko !
What kind of surgery will be performed ?

It looks like the spinal tap pain meds and altering the local and regional anesthias can help over come the opioid over use and possible immune suppression met progression,NK syndrome?
Sorry Mikko
Too many articles
It's my understanding that the opioids are the culprit to mets progression ? So effective pain management is really important in using them as short of a time frame as possible ?

Preventing the Development of Complex Regional Pain Syndrome after Surgery

http://anesthesiology.pubs.asahq.org/ar ... id=1942048

Jussi --I agree with Olga's theory of couple of full days overeating and helping to gain weight.

[D.ap]

Hello Mikko and Jussi

I was wondering how Jussi was doing after the jaw surgery?

[arojussi]

Bad pains yesterday. Had to take opiats. Tumor was around nerve. Nerve was saved, so margins most likely were not negative. But because of embolisation microscopic cancer cells have hard time growing. We can deal with possible residual tumor after gamma knife. Now we hould have enough time to travel to China before thinking our next move.

[Olga]

Neuropathic pain is a very bad one for sure, Ivan had a very hard time with it after the second thoracotomy, the one he had to have here in Vancouver to fix the airlieak when his lung collapsed 1 month after we got back from Germany after the first surgery there with Dr.Rolle, it was a long time ago...I remember that it was very bad for two weeks, the intercoastal nerve was damaged and he had to start gabapentin eventually and it seemed to work in a week or so (or it was nerve that healed?).

[arojussi]

Thanks. I actually didnt even though that nerve damage could cause my bad pain day, but it actually makes sense because wound is very clean and there is no sign of infection. My nerve will most likely heal fully over time. Feeling around my moth is symmetrical already. If I need any more treatment to my mandibular met I will almost certainly lose that nerve and with it sensation around half of my moth. Nothing I couldnt sacrifice without thinking twice about it.

Even fractioned radiation would most likely destroy the nerve. Cryoablation or cyber knife would definetely destroy the nerve. Of corse this is problem of the future, but I like to think ahead as far as possible. Currently I believe doing bigger surgery for my mandibular met is best option if tumor grows back. Recovery from mandibular reconstruction would take weeks, so we need to have time for that. Having radiation if patology shows positive margins would destoy nerve as well, so to me waiting if and when met grows back and dealing with it then seems like best option.

[D.ap]

Jussi
Had a busy day at work today
I'm sorry that you are having pain. It sure is understandable .

Can heat or iced therapy help? And can u alternate antinflamatories at a given time as I would surmise swelling is causing a degree of pain ?

Some antiflamatory can interfer with healing , is my understanding however inflamation is in my
understanding is sure is number 1 to combat ?

I'm truly glad to hear from you and wish you a good nights sleep .
Respond when you are able , our friend .

The determination was ASPS huh as you are talking margins ..
Good night
Smoothies with protien powders , if doc says ok
Or try to drink low sugar protein drinks