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

[Olga]

How do you feel in general? what about blood pressure? If you remember when you added avastin to cediranib+opdiivo there was a study that was cancelled for sunitinib+avastin with high blood pressure one of the limiting factors.

evaluate all other conditions associated with elevated BNP:

Acute renal failure and chronic renal failure

Hypertension (HTN)

Pulmonary diseases such as pulmonary hypertension, severe chronic obstructive pulmonary disease (COPD), pneumonia, pulmonary embolism, adult respiratory distress syndrome (ARDS)

Cardiac causes -Myocardial infarction, atrial fibrillation, acute coronary syndrome, cardioversion, valvular heart disease, myocarditis

Liver cirrhosis

Hyperthyroidism

Sepsis

Chemotherapy

[arojussi]

I am supposed to use ceridanib for 3 weeks then week off, this is off week, but my blood pressure immediately dropped and pulses rose to compensate. In rest pulse was usually around 80-90. This will certainly elevate pro-bnp. However during walking my heart rate staied between 90-105. So I restarted cediranib a day early yesterday.

Other than very painfull neck and shoulders I am generally feeling well. Of course pain will also elevate heart rate. Immunesystem attacking against shoulder muscles explains elevated crp and in theory elevated tnt. Treatment is based on symptoms only. In this case I need lots of massage to keep my muscle pain tolerable. If neccessery I have to take break from nivolumab, if shoulder tension becomes intolerable.

In cenral population elevated blood pressure and driarrea would be huge proplems with this compination, but as usual my body reacts in weird ways, cediranib gives me diarrea and avastin constipation so I need both to keep my bowel working somewhat normally and blood pressure ideal.

[arojussi]

Krea was normal so no kidney failure.

[arojussi]

Thyroid values were normal, so no.

Liver: afos was mildly elevated 2 weeks ago. Like 115 when normal is 105. Other liver values normal, so no chirrosis.

Myocarditis: very difficult to distinguish immunotherapy working in heart met and autoimmune, viral or bacterial heart inflammation. Also I had slight flu, but no systemic symptomps, so treatment response is possible. Other inflammatory processes in the heart less likely. Disease progression is possible, but as asps is slowly growing cancer and 2 weeks ago echo was stable pro-bnp was 700 and around 3 weeks ago chest ct was stable. This fast disease progression doesnt seem likely.

Ideally tnt and crp are elevated by autoimmune reaction in shoulder and neck muscles and or immunereaction in heart met. As crp was little elevated 2 weeks ago, when everything was fine with heart I am carefully optimistic, that crp and tnt might not be related to heart met progression.

[D.ap]

Krea was normal so no kidney failure.

Hello Jussi
Was a UA clearance rate compared to the bloodwork creatine?
Are you on thyroid Med ?

[arojussi]

I am not on thyroid med. It was just pre-infusion blood work, so only basic tests and somehow no leucokyte count.

[D.ap]

Thanks . So thyroid levels are a result of the meds etc.
Your breathing after exercise is ok?
You’ve had a metabolic (CMP) workup ? Calcium levels etc .

My dad was COPD and his parathyroid was affected and the 24 hour UA test helped to give some finite values to compare to his bloodwork .

[arojussi]

If I want definitive answer all I need is total leucokyte count and neutrophil count. Assuming, that other white cell counts are somewhat normal I can count neutrophil/lymphocyte ratio from there. Last time 2 weeks ago netrophil count was 2.22 and total leucokyte count 4.35. So as long as these numbers havent completely changed disease progression is very unlikely.

[arojussi]

Well TnT indeed isnt completely spesific to heart and with massive heart met random elevation in Tnt wouldnt be suprising. And spike in pro-bnp can be explained with ceridanib break and bad nerves. My dad talked shrortly with doctor during my infusion. Doctor wasnt too worried.

As TnT can be elevated by heart damage and autoimmune muscle disease, both are possible. Heart muscle damage is just more obvious, but as I had severe neck and shoulder pains lately and no chest pain I think muscle inflammation is reasonable explanation. It is usually mediated by t-cells. Well 2 weeks for next blood work, then I will have to face reality.

[D.ap]

Morning Jussi
Did your neck pain start after you started Keppra?
Looks like around 8% of folks report neck pain .

[arojussi]

Finally we found painfull muscle. It is left sternocleidomastoideus again, but way worse than in summer. I been having these symptoms singe opdivo was started. Now as wrong muscle was massaged for long time inflammation in sternocleidomadtoideus got out of control. As rheumatic side-effects are strongly connected to increased response rate this is good news. This is t-cell initiated reaction, so if same process is happening in my heart met, this would explain tumor looking bigger and heart function temporarily declining.

[D.ap]

This discovery sounds good !
Looks like a self massage can be performed . : )
Hope you feel better soon.

[arojussi]

Well just walked 45 minutes highest my heart rate went was 91. At rest 70. Somehow I doubt, that TnT rising over 20 last week wasnt related to heart. As other possible explanation is autoimmune inflammation in muscles and my left sternocleidomastoideus is very swollen and painfull.

[D.ap]

Evening state wise Jussi.
Hope you are feeling better as the week continues on..
Question
When you notice your pain , is it all the time ?
Is it when you first wake up then gets better as the day goes on and or possiblely after a meal ?

[arojussi]

Mornings mostly stiffness and pain increases as day goes on. Unless stiff muscle is massaged.