• Welcome to our the new and improved forums systems. For tech support (only during May 2020), please email forums-2016@lymphoma.com. Also, please note that no new memberships are being processed for 6 days (5/26/20) as we continue to make upgrades to our systems. Existing members may continue to use all systems freely!

Update

Lyssa

Member
Around now was when I was going to post my ‘Hurrah, we have safely reached 2 years post-treatment’ message. And although life has got a bit more complicated than that I will start with

Hurrah, we have safely reached 2 years post-treatment.

Because that is a good thing in and of itself.

Secondly I would like to thank the forum members for all their help for helping me to learn the skills that got me through his chemo and are being used again

Given that he had, and possibly still has, very low immunoglobulins and some residual lung damage from pneumonitis it would be tempting for me to disappear into frantic googling and decision fatigue. Instead I am just following the guidelines and hoping that a bit of luck will be on our side. I found andym’s post on the immunology talk very useful in raking my worry down to sensible levels, and reminding me that in spite of at one point having almost no recordable immunoglobulins while working in general practice with people coughing and sneezing on him he has not been ill at all in this period, so his immune system must be doing something.

Po18guy’s posts always tap into my affinity with the stoics, and I am reminded that if I cannot control anything else I at least can control my response to things. Life is fragile. If lockdown hadn’t happened I might have been killed in an accident on my way to the shops. So an increased awareness of that fragility should not throw me completely off my game.

And everyone here constantly reminds me of the fact that kindness and grace under pressure are achievable.

So it is back to my mantra ‘we are alright today’ and the knowledge that bad times resolve, for good or ill, one day at a time, and I just have to get through today ‘bloody but unbowed’.
 

anjou

Active member
I’m glad you are both well today and 2 years is quite the landmark.

Thank you for this reminder:
“So it is back to my mantra ‘we are alright today’ and the knowledge that bad times resolve, for good or ill, one day at a time, and I just have to get through today ‘bloody but unbowed’.”


Many of us here have made it through difficult times when the future seemed uncertain. Thankfully, many of us made it through these times. It’s easy to forget that we just need to take a day at a time and we can get through rough patches again.

Heers to hope that both of you and all of our friends here make it through the pandemic
__________________
 

andym

Super Moderator
Two years NED is worthy of note and celebration, regardless what else is going on I the world. But with what is going on in the world, I can understand a somewhat muted feeling of joy. We are all navigating through a period of uncertainty. But as you said, we can get through this one day at a time and then see what the next day brings. Take care and stay safe.
 

zac495

Moderator
Two years is HUGE!! The worry didn't subside for me until about 4 years - and even since then I still worry - but it does ease up.

LOVE and stay safe!
Ellen
 

po18guy

Active member
Firstly, congrats!

Apocalyptic rocker Warren Zevon, when well along with mesothelioma, advised us to simply "Enjoy every sandwich."

For those who worry; for those who pray; for those who have some belief, there was a man named Francesco Forgione (Padre Pio), born in Pietrelcina, Italy in 1887. Priest and confessor, he famously counseled: "Pray, hope and don't worry." He went on: "Worry is useless. (God is merciful and will hear your prayer)."

He survived the 1918-1920 flu pandemic, living until 1968. He was certainly right in that worry is useless. It prepares for nothing. It sustains through nothing, yet due to our weakness it persists through everything.

On another forum, there is a member asking doctor for regular PET scans, just to see if it is back. I could also do that, I suppose, but I am too busy living out my extended warranty.

Pax et Bonum (Peace and Good).
 
Last edited:

frankhond

Member
Congratulations and keep staying safe! This immune system stuff is (in my experience) highly random and counterintuitive. After my sct in late December both my wife and daughter have been really sick several times, and looking back at the symptoms at least one of these was probably covid. They both pumped out virus-filled clouds into our apartment for weeks. Me... I got a little sore throat half a day once and another day I was a little tired. Go figure.

Otoh both my mother- and father-in-law recently tested positive for covid. She has every possible risk factor, but was fairly unaffected. He is healthy and under 70, worsened rapidly and is now in a respirator.

We just don’t know how the randomness strikes. Keep enjoying life while staying as safe as is reasonably possible.
 

Mankyle

Member
Frankhond...

Actually some of the worst cases of COVID19 arr not directly caused by virus induced damage.

What a couple of physicians have told me is that some patiets develop a IL-6 related cytokine storm. It is a similar condition to what happens in CAR-T patients but in this case it is mainly the macrophages what cause the inflammation.

That's why Tocilizumab (anti IL-6 MAB) is being used for...

My wife was in Spain's Zone 0 (Madrid) some days before caontaintment was declared in the country and four days thereafter was a little bit ill for 5 days....
We don't know if it was COVID 19 becaus until next week we won't be able to do tests...
Me I had a bad cough two days...
 

frankhond

Member
@mankyle there is indeed a number of things happening when it gets bad... we get daily reports and it’s kidney failure, blood clots, organ failure, this and that... for those affected like this it’s a horrible virus. They list risk factors but it’s still a mystery why some people react badly. Over here it’s mostly men and lifestyle doesn’t explain the discrepancy, there is talk of genetic differences.

Anyway there is a large trial coming for a very promising antibody test developed at the university here that might be accurate enough to actually use for the public. They say it might become available in the summer. Then we will know if we had it. Hopefully it grants immunity.
 

Mankyle

Member
There are even hints that nicotine could block some cell receptors that the virus could need to infect the body. There are a couple of trials investigating that..

We know that we don't know much....

Tack Frankhond!!
 

andym

Super Moderator
Frankhond...
What a couple of physicians have told me is that some patiets develop a IL-6 related cytokine storm. It is a similar condition to what happens in CAR-T patients but in this case it is mainly the macrophages what cause the inflammation.
On a Facebook fNHL group there is a patient who was the first in one of the CAR-T trials for fNHL at UCLA. She is doing well now but had a horrible cytokine storm with a lot of time in the ICU. One of her medical team recently went through that with COVID-19 and when they recovered told the patient that she now had a much better understanding of what she had gone through.

Hopefully, we will get progress on better tests and treatments. Right now, I'm good with just staying home and being as cautious as possible.
 

po18guy

Active member
I've been thinking that a bug, stinky cigar would certainly help with social distancing. Now, we see that the nicotine might also help.

Ah...maybe not.
 
Top