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

[arojussi]

Our oncologist has read of PD immune therapy patients being allowed to go upto the 200 levels before administering levoxyl .
Deb: I really dont understand this comment.

As far as I know my calcium is normal.

[D.ap]

Evening here in states Jussi,

I believe the 200 level was in reference to T3 levels which in addition to T4 levels can give a doctor reason to administer a hormone supplement to a patient when test shows high with the TSH blood test?

TSH values with blood work, is noting a problem , then other test will follow to begin to focus in on the problem.

Problem as I understand it is that normally thyroid problems are asymptomatic as a rule (historically) and we now have parameters (ie low to high values ) to measure.However the medical field has not agreed on whats the right treatment to what is Ok and not ok for hormone levels ?
Especially when oncologist are throwing in cancer treatments and then seeing the body react to aid with the "foreign" med or act adjunctively with our immune systems ?

[D.ap]

I agree with Olga unless your doctor indicates it’s a life issue that you go on hormones , to hold off till you test for levels ..

[arojussi]

At the moment I am leaning towards trying tyrosine tomorrow and see what happens. I can stop if I start feeling symptoms of hyperthyroidism. At the moment my symptoms fit better to hypothyroidism even if t4v is normal. I am sensitive to cold. Of course I have always been that way. Skin is little dryer than usual. I have been having little more cramps than usual. Very mild symptoms hardly noticetable, but they fit to mild thyroid dysfunction. likely my tyrosin level is normally little higher than current 13 mlU/l.
I had 2 tsh tests and t4v test I dont see what lab test would give new information.

[D.ap]

Hello again Jussi
It’s my understanding that hormone replacement is not a stop and start regement ?
You commit and then proceed forward .

https://www.synthroid.com/what-is-synth ... -to-expect

This is what your doctor presented ?
Maybe I’m off base
Debbie

[arojussi]

So had another scan and everything seems stable. Of course have to wait gamma knife specialist`s opinion about brains to be certain.

There is some fluid around my heart. Pericatdial effusion was medical term if my memory serves me correctly. It has been there for long time. Most likely since my first thoracotomy. Ekg shows usual T-inversion thathas neen there for a decade. Met is very unlikely and according to doctor cardiac ultrasound would not bring more information at this point.

There is small avascular necrosis in my right femoral head and left humeral head. They are small and asymptomatic and hadnt procressed. They have been there at least 2 moths. Another lovely side-effect from cediranib that we have to monitor.

I take 100 micrograms of tyrosin medicine at the moment. Labworks looked good with 125 micrograms, so I lowered the dose to 100 micrograms and we adjust the dose if labs turn to a worse or symptoms of hypothyroid return.

Still have lovely diarrea, that is actually only symptom affecting my quality of life. But in theory I could do resech even if I cant leave the bathroom. So I cant go to work,but maybe I could start working with phd.

[D.ap]

Hi Jussi
What is the downside of not treating the fluid around your heart?
The necrosis on your femar is from TKI usage?
One last question , is it 100 micrograms per KG or are u taking less than 1mg of cediranib?

Debbie

[Olga]

Deb, he is talking about the 100 micrograms of the supplemental drug to increase the tyrosin hormone production, not cediranib.
Jussi - post surgical (post thoracotomy) pericardial effusion resolves in few months, may be a year. You can ask Dr.Rolle how long can it persist. How about bigger lung mets in the heart area - do you have any? Why wouldn't they simply order an echo.

[D.ap]

Oh ok
Levothyroxine!
I understand now
Thank you Olga

[arojussi]

Well it is not indeed 100 percent clear what causes effusion. Ekg change has been there for a decade and fluid in mri has been there at least few years. At first we planned echo, but then my blood work showed that ensymes, that tell about heart damage went down, so my doctor didnt anymore feel that echo was neccessery. It is possible that met size of few mm could irritare my heart and cause the fluid. In theory fluid could be from chemo I was stubid enough to have when I was 17 or simply lack of exercise, because fluid improved when I started to exercise again. There was at least one met near my heart cryoablated succesfully in 2012. Of course echo is simple test and there is no downside of having one, but is very unlikely to give us new information.

[arojussi]

If it would be up to me, I would have echo. Of course it is very unlikely to give new information and most likely results just say pericardial effusion and reason behind it cant be identified. But there is one in a million possibility, that there is a heart met that echo would show. As echo is simple, cheap and has no radiation I think it is worth it. Of course doctor doing the echo must have a lot of experience and that is why I am hesitent to simply have echo in private hospital with our own money.

[D.ap]

Good morning Jussi
I’ve been away from my phone this weekend..
Have you read the “Heart metastasis “ section , that Yosef started in 2006?

Worth the read.
You had a tumor near the heart treated by
dr. Rolle?

http://www.cureasps.org/forum/memberlis ... rofile&u=5

[D.ap]

Link corrected
Putting on glasses, does wonders! : )
http://www.cureasps.org/forum/viewtopic ... =11937#p35

[Olga]

Debbie - Dr.Rolle did not do any cryoablations, only surgeries.

[D.ap]

Olga, I see that now , from 2 places on Jussis posts—Thank you . : )

The first in 2016

Jussi writes-
“After I stopped interferon cancer advanced again, so 7/2012 I had rethoracotomy of the left lung. In the 6/2012 Prof Rolle saw 4 – 5metastases in my right lung. At first RFA was considered. I had it before in 2011. However one tumor was crowing close to the heart, so heat was not the best option. Instead we decided to try cryoablation. (RFA and cryoablation are radiological operations) We contacted Dr littrup, who works in America. 9-10/2012 he was able to freeze 3 metasteses from my right lung in the first operation and 2 more in the second operation. Cryoablation was very simple operation with little pain and I didn´t stay in the hospital more than a day or less. “

Jussi did you have to retreat a left lung tumor?
You mentioned above that “one tumor near my heart” was successfully treated .