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

[Bonni Hess]

Dear Jussi, As with everything with this insidious disease, there are so many unknowns and all we can do is what you are doing so very well by being as well researched, knowledgeable, informed, and pro-active as possible. I am very grateful for all of your valued shared thoughts, ideas, and opinions which truly benefit us all since shared anecdotal nformation continues to be one of our most powerful weapons in fighting this extremely rare disease. Stay strong and let Hope continue to lead you on this very challenging journey. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[Ivan]

Is the cardiac MRI soon?

[arojussi]

We havent yet ordered the cardiac mri, but should most likely have it in few weeks. Just remembered, that during oncolytical virus treatment main tumor turned to soft more than shrank. If similar situation is happening in my heart met, then we couldnt measure the shrinkage, but heart could beat more efficiently. Allowing my pulse to go down to 60-70 beats in a minute. I am not objective, but this massive change in heart rate is hard to explain if tumor has grown.

[arojussi]

In the brains mixed response, some hrowth some shrinkage. In the rest of the body clear disease progression. My neutrophil count is high, so my immunesystem explains lack of response. Have to increase my lymphocyte count somehow. Avastin will start next week. If we cant get me to respond I am dead. Stool transplant migh be good idea. Essentially If I increase my lymphocyte count somehow I will survive.

[D.ap]

In the brains mixed response, some hrowth some shrinkage. In the rest of the body clear disease progression. My neutrophil count is high, so my immunesystem explains lack of response. Have to increase my lymphocyte count somehow. Avastin will start next week. If we cant get me to respond I am dead. Stool transplant migh be good idea. Essentially If I increase my lymphocyte count somehow I will survive.

Jussi how high is your neutrophil count ?
Could it be from infection ? Heart enzymes are ok.

I’m sorry you are having to possibly reconsider your treatment plans .

[arojussi]

Total leukosyte count was 5.89. Neutrophil count 3.8. This would mean, that 64.5 percent of my white blood cells is neutrophils. Meaning, that highest there is 35.5 percent of lymphocytes. lymphocytes. I believe that other whitle blood cells are smal Minority. So according to my math my netrophil lymphocyte ratio would still be around 2. Less than 3 is optimal. Some studies say less than 4.2. Not as bad as it first seemed. Neutrophil count is high, but lymphocyte count isnt that low. Cediranib can cause neutropenia, so it is shame to change that to new tki or avastin.

This number actually is exactly what acne patients have.

So once again would really appreciate, if somebody can point out my error.

Will try to continue to eat more sink.

[arojussi]

Forgot monocytes. So I counted again assuming that monocytes and their mature forms machrofages take up to 10 percent of leukocytes in the blood. Wikipedia said max 8 percent. Monocytes travel into tissues and mature, there isnt so many of them in the blood. Neutrophil lymphocyte ratio is still less than 3. I am almost certainly forgetting some white cells here.

[arojussi]

Total leukocyte count 5.89. Neutrophil count 3.8. Lymphocyte count=total leukocyte count-all non lymphocyte white cell. So total leukocyte count-eosinophil count-monocyte count-neutrophil count=lymphocyte count. Assuming that my amount of white blood cells is somewhere near normal. And there arent lots of basophils or other leukocytes I forgot. We get 5.89-0.04x5.89-0.8x5.89-3.8=1.3832. And lets just divide neutrophil count with lymphocyte count: 3.8/1.3832=2.75. Still less than 3. But I am sure I missed some white blood cells. Also if my eosinophil count and similar numbers are out of balance this is just waste of time.

[Olga]

They mostly use a NLR as a prognostic factor - without taking other cells into consideration other blood cells, neutrophils to lymphocytes ratio - its initial amount at the start of the treatment and how it changes with the treatment time.
I make a table with Ivan's amounts and update it with the new results. Ivan's lymphocytes are pretty low all the time - at the lower norm, sometimes even less than that. His neutrophils are very low too, most often lower then the norm a bit. His NLR was 1.33 before the treatment started, then it rose a bit to 1.8 and lately fell to 1.06.
Do not overdo the zinc supplements, there is some wrong effect when it is to high. Ivan is at the lowest suppl zinc dose avail. We try to fill his zinc dietary way as it is harder to overdose in a diet versus suppl. There is a better bio oral availability when the source of the zinc is from the meat sources versus plant sources, but some plant sources are very high in zinc - pumpkin seeds for example.

[Olga]

Just ask your oncologist to add the separate lymphocytes count done in your blood work, it is easy and they usually agree easily as it is a well discussed prognostic factor now.

[arojussi]

Yes I am very carefull with zink supplement. If i am responding to immunotherapy looks like my response is weird. I could be dealing with it worse. Me trying to google things to figure out things, that are way to complex is my natural Impulse. Basically my scan in general looks worse, but my clinical condition is improving dramatically. Heart rate of 60-80 is simply too drastic improvement even if chest ct showed slight progression.

[arojussi]

So as cediranib definitely isnt working need another medicine to prevent blood vessel formation. Currently Axitinib and Avastin are front runners. I remember once reading about Crizotinib. It might by me one more year to wait immunotherapy to kick in. Also anlotinib if we can get access to it.

[Olga]

We had a case when avastin was active in our patient but the resistance with the speed up growth developed pretty fast, in just few months. Axitinib seems like an obvious choice as it was/is tested in combination with Keytruda in Miami trial.

[D.ap]

So as cediranib definitely isnt working need another medicine to prevent blood vessel formation. Currently Axitinib and Avastin are front runners. I remember once reading about Crizotinib. It might by me one more year to wait immunotherapy to kick in. Also anlotinib if we can get access to it.

Hello Jussi

So you’ve been back on cediranib ? What dose if so .
How are your liver values on your blood test ? No toxicity issues that indicate TKI overload?

If the CT looks to be showing an increase , could you not maybe assume pseudo progression by way of the Opdivo and yervoy combo( neutrophil increase inflammation ) and see what the gaited MRI shows in a month or so? You are on about to embark on month 4 of the Opdivo yervoy infusion?

[arojussi]

As neutrophil count increases cancer spreads, so neutrophil caused inflammation would be very bad, but if lymphocytes are attacking the tumor it might look bigger. Interestingly effusion is still gone and even grown brain tumor isnt surrounred by inflammation and it isnt causing symptoms like vomiting and morning headaches. So basically situation doesnt fit to pseudoprogression or tumor growth. So opdivo might be working slowly and in a weird way, that is why doctor agreed to continue it for now. And my heart rate still goes to 69 after exercise and lower, so this is one big placebo effect if tumor has grown. Well I have whole weeked to try to figure out ways to get me to respond to immunotherapy. Monday next doctor`s appointment. I remember calling liver the strongest organ in my body, so liver values are fine.