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

[D.ap]

Have you tried ibuprofen ? And if so does it help at all?
Also a while back you talked of reducing your Keppra , so you are taking it just before bedtime ?

[arojussi]

I couldnt tolerate keppra, so we try to manage seizures with aggressive treatment of brain swelling. So I use both avastin and cediranib. It has worked this far, so most likely seizure was caused by brain swelling. Ibuprofen helps a little with sternoceidomastoideus pain.

[D.ap]

Jussi
Hope your day had brought you reports of reduced pain .
Are you still on Propranolol?
When’s your next MRI scheduled for the brain ?

[arojussi]

Yesterday My heart rate dropped to 68 after walking, so my heart functions just like before.

[D.ap]

Hi Jussi
Good HR.: )

[arojussi]

So total leucokyte count was 6.8. Neutrophil count 4.1.

Normally lymphocyte count is between 20-40 percent of total leucokyte count. Eosinophils 1- 4 percent of total leucokyte count. Neutrophils 55 -73 percent. Monocytes 2 - 8 percent. Basophils 0.5 - 1 percent.

So lets assume, that my leucokyte counts are normal and lets count neutrophils to lymphocyte ratio. So majority of white blood cells are neutrophils and lymphocytes. Rest make up to 13 percent of white blood cells at most. So 6.8-4.1-0.13•6.8=1.816 so neutrophil to lymphocyte ratio is at most 2.26 or less. For cancer to grow neutrophil to lymphocyte ratio most likely need to be above 3 as fagosytic cells like neutrophils need to destroy tissues, so cancer has room to grow. Yes this would be easier and more reliable with diffrential leucokyte count, but I dont have it.

As usual I will appreciate if anybody can point out if Imade mistake somewhere.

[D.ap]

Hi Jussi
Good day there my friend . : )

Do you have a onc that has input to your thoughts / labs with an opion ?

You are on 3 different meds ( plus added others to manage side affects , Polypharmacy ) that are somewhat unconventional . They all are appearing to be having a positive affect with your treatment , but are not understood current clinical trials maybe ?

How you feeling ?

[arojussi]

I made error. Exact total leucokyte count was 6.82 and neutrophil count 4.18. So neutrophil to lymphocyte ratio is below 2.4. Still too low for cancer progression.

[Olga]

Yes it is a good ratio and the progression is unlikely. Also I found an article re. NLR values correlation to the clinical history in some clinical trial, they found that besides of the tumor progression cases, it was also increasing in 100% of the patients later taken off the trial due to a higher grade Adverse effects situations when the patients were finally taken off the trials due to the serious side effects developing, so NLR is an interesting number to watch but it is not 100% progression specific. i.e. these Phagocytes neutrophils can destroy other tissues besides making the room for cancer to grow, just because they can - in organs or muscles.

[arojussi]

Thanks. I didn't realize, the possibility of NLR not being specific. Muscle pain is indeed most likely a side-effect of immunotherapy. Muscle inflammation is usually antibody mediated, so it is most likely caused by t or b-cells.

Moth ago NLR was 1.4, so cancer progression in this time is indeed unlikely. Scan soon, so we will know more. Muscle pain hasn't required treatment discontinuation yet. I have been pretty agitated lately, because of pain and fear, but as massages are able to control pain I can life with it. Some opioids were desciped, so I can use them if necessary.

[arojussi]

Lets look at other lab values. Moth ago pro-bnp was less than 700. Crp was 20 rising, but didnt recuire action. 2 weeks ago crp was around 80 no systemic symptoms or fewer, so no bacterial or viral infection treatment continued. Pro-bnp closer to 2000, but as there were cediranib break and blood pressure dropped and heart rate elevated, that explains that. Most scary number tnt 29. This week crp was 4. Tnt 8. during this time severe pain in sternocleidomastoideus muscles. Muscle damage can elevate tnt.

[Bonni Hess]

Dear Jussi, I am very confused by, and unfamiliar with all of the very detailed scientific data which you have been providing and discussing, but am humbled by your extensive knowledge of the various lab values and the relevance of them to the status of disease progression or cancer inactivity. I do however better understand and am much more knowledgeable about scan results, and am holding very tight to Hope that your upcoming scans will show disease stability and shrinkage/disappearance of your mets in a very successful response to your treatment, and will be anxiously awaiting your scan results update. In the meantime, I Hope that you will be able to obtain some relief and resolution for your pain, fear, and agitation. With special caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

As immunotherapy my responses have always been mixed reading scan results can be very difficult. In brains tumors grew before they shrank and now we hope, that similar process is happening in my lungs. After first two moths part of heart met looked bigger in the scan, but 32 hours later my heart started beating normally. As mets seem to melt away, they definitely look bigger in early scans, but cant push tissues like they used to, so scans arent as helpfull in asps with immunotherapy. Especially as asps is slowly growing.

[D.ap]

Evening from Midwest USA Jussi,

My thoughts are in line with Bonni’s .
The blood values are beyond my expertise . : /

As Joshua’s tumors are/were distributed / disseminated
not in his heart, but yes mixed reponse ,so I can somewhat relate to what you are feeling . But we saw through scans , not labs.
However Jussi you were always so supportive when I reported increases , but you pointed out Josh showed good clinical signs of improvement . : ) and you were correct . It was pseudo progression rather than progression .

However scans should still give important information , huh..

[arojussi]

At the moment we have undeniable response in the brains. Mixed response, but leaning towards disease progression in lungs just like brains before. Heart tumor has been stable after first two moths and as long as I use ceridanib and avastin my rest heart rate is below 70. Most likely results will continue to be mixed and achieving clear response to everywhere will take as long as it will. We dont have certainty how long it will be. For melanoma patients with complete response to yervoy or similar drug achieving renponse took average 2 years. Any intervention can work in 3 ways. Help do nothing and hurt, so doing intervention at this point we risk losing current response. So assuming, that there is disease progression, we can just hope it is pseudoprogression as tumors will definitely look bigger as immuneraction activates. Or we can try do stool transplant, but as I already have some response this is very risky as stool transplant is big change to cut microbiome. Or we can try to create abscopal effect by radiating or ablating suitable met, this is best idea I have come up so far, but we already radiated one subcutaneous met. Doing same again is not cuarantee to help. Radiating heart met itself to attract leucokytes to site is possible, but morbity would be devastating, so I dont want to do it, untill I am absolutely certain it is only option.

Of coure it is early for this discussion as we dont have scan results yet.

And by the way subcutaneous met, that I didnt allow to remove surgically has once again turned red. I was really worried when lesion shrunk just 2-4 mm to diameter of 11-13 mm and then returned to skin colour. When it was planned to remove with surgery it was 15 mm. Similar progess in lung mets and heart met would definitely look like disease progression.