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

Those who lost their battle with ASPS :(
Olga
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Re: Jussi from Finland - Dx 2008

Post by Olga »

Differentiation of pseudoprogression from tumor progression is difficult, both entities have similar appearance on conventional MRI. Some other perfusion MRI using ferumoxytol is discussed in the articles about pseudoprogression evaluation using MRI in patients with glioblastoma where up to 31% in this article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4590772/
but I have no idea if this approach applicable to ASPS and heart localization , may be all cardiac dedicated MRI scanners are perfusion MRI?
Olga
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Thanks. I am starting to believe in pseudoprogression as my heart still beats normally unless I start worrying about the subject. Once I am afraid of my heart beating too fast, of course it will do exactly that. But the fact that my pulse is lower when I walk compared to when I sit makes me believe that it is just my nerves. Walking calms me down. Also when I get scared my heart rate and blood pressure all go up. If it would be tumor growing, then heart rate should go up to compensate for lower blood pressure. Also all betablockers do is they knock down adrenaline. They wouldn't help so much if left ventricle would be tiny, because tumor is pressing it. I added 5 mg of Propranolol before bed. Now I use 25 mg in a day. Usual starting dose is 40 mg, so I can safely increase my doses a lot.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

One more thing: heart met was actually considered to be stable.It might have changed in shape, but wasn't measurable bigger. There were new tumors and growth in brain and lung tumors. There was also little shrinkage. So disease progression and improved clinical status dont fit together. As I read this board pseudoprogression seems to be even more common in asps than melanoma. In non small cell lung cancer pseudoprogression is rare.
Ivan
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Re: Jussi from Finland - Dx 2008

Post by Ivan »

What's the data on how long pseudo progression typically lasts?
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Ivan and Jussi
I was reading about how neurologist are learning how to discern pseudo verses progression and or medicine reaction , while the patient is on temador , using an MRI .
There seems to be a knowledge of the difference of the flair pattern that discerns medicine , pseudo and or progression diagnosis ?

Jussi , do you think the timing of your echo could coincide / be performed during your and or soon after your infusion ?
Better yet get that gated MRI. :)

http://www.ascopost.com/issues/august-1 ... -patients/
Debbie
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Saying with 100 percent certainty if growth is progression or pseudoprogression is practically impossible, because there isnt yet enough data about pseudoprogression in asps. Responses have been dramatic but long lasting pseudoprodression is often involved lasting up to 6moths.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Basically pseudoprogression can happen anytime when tumor becomes inflammated. Inflammation can also cause ventricular tachycardia. So as side-effects of the immunptherapy peaked after 3.infusion it makes sense that inflammation in the tumor itself could also peak around that time and increase my risk for ventricular Tachycardia. It takes time for inflammation to go down, so 2 moths after start of immunotherapy naturally inflammation was still there. Of course in order for my theory to make sense my heart should start beating easier as inflammation goes down. The day after 4.infusion my heart suddenly started beating normally. Things are either going really well or really badly and if things are going really badly you really wouldnt expect my symptoms to decrease. Cough is virtually gone.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

All the above sounds reasonable as well as the cough being gone , is awesome news.

Joshua’s cough ( from 6cm lung tumor on left side ) subsided after 2 months on Opdivo . We then had an MRI(because of headaches ) at the 2 month mark , show reduction in 2 tumors in brain . 2 months later we had our scheduled 4 month CT scan that showed Joshua’s liver tumors increasing , but his lung tumors decreasing .

At our 7 month scan I believe , the liver went from inflammation to reduction .

http://cureasps.org/forum/viewtopic.php ... =15#p10261
Debbie
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Thanks.

China can treat brains . There is 4-5 growing lesions. They are more clearly visible than 2. Moths ago. But if they can be radiated, then brains are not the problem.

Ekg looks cleaner than before. Took extra propranolol before, because fear of ekg increased my heart rate and blood pressure. To me 120/75 is high. It usually it is 99/60 extremely low. Essentially I use betablokers because of my nerves. For idiopathic ventricular tachycardia betablokers work lot better than in structural abnormalities in the heart.
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Echo is identical to one taken 3 weeks ago. Pro.bnp 1500.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Jussi
Remind us again of the bnp norm levels ?
Debbie
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Less than 130 excludes heart attack. Values between 1300 -1800 could mean heart failure in 75 year old or older patient.
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Lymphocyte subpopulations in patients with acne vulgaris

Me trying to reassure myself , that growth is pseudoprogression. I have been dealing with severe acne ever singe my interferon treatment. Apparently sthis can mean, that some lymphocyte subpopulations are elevated. T-helper cells and B-cell counts were elevated, while T-suppressor cell count was normal. Study actually said it better:
T‐ and B‐lymphocyte subpopulations were measured in the peripheral blood of patients with varying severity of acne and in acne‐free control subjects. Increased severity of acne correlated with an increased number of T lymphocytes, helper T cells and B cells, while the number of suppressor T cells remained normal and did not alter significantly.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Evening Jussi from USA
So are you saying steriod use isn’t needed for your acne ?
Debbie
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Neutrophil Lymphocyte Ratio in Patients Receiving Isotretinoin for Acne Vulgaris

before starting treatment acne patients´s mean neutrophil counts were 4354+ or - 1623 mean lymphocyte counts were 2410+or-716. NLO values were 2.06 +or-1.42. Treatment response wasnt correlated by these numbers. I hoped that NLO meaned netrophil count related to lymphocyte count. As to immunotherapy response you need high lymphocyte count and low neutrophil count. I hoped that acne would be sign of this type of white blood cell counts. As usual I think and write to this site at the same time. I know I would appear smarter if I thought about these things first by myself, but this way other members can point out my errors sooner and I save time. This time I am definitely over my head I cant figure out my white blood cell counts based on my acne. So lets find out where I am wrong and have blood test to find out correct lymphocyte count.
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