I forgot to mention this, but as threatened, I'm back in the hospital. So far we've duplicated every single test from seven days ago and gotten the same results as before. The only thing new is that my pneumonia is either a little better or a little worse depending on whether you believe the X-ray or the CAT scan; and I apparently have a brand new enterovirus (like a cold virus). That's damn mysterious since I haven't left the house for the past week except to come to the hospital.
It's also disturbing since the most likely explanation is that my immune system has been so weakened by the Tecvayli that I need to start living in a bubble. And that actually seems like it might be the case. Here are my immunoglobulin levels:
The problem with multiple myeloma chemotherapies is that they don't distinguish between immunoglobulins. In my case, only my IGG immunoglobulins are cancerous, but the others all get taken along for the ride. In this case they've really gone along for the ride. My A and M immunoglobulins have been wiped out to undetectable levels, and the G immunoglobulins are so low that it's probably only cancerous cells that are left.
I haven't talked to my oncologist about this because I keep ending up in the hospital instead of keeping my appointments with him. I suppose it's a good sign that he hasn't called me in a panic about this, but that assumes he's seen the test results—which he might not have, since he doesn't seem to bother looking at test results until I'm actually in the office with him.
In any case, no one really seems to know what ails me. They say my pneumonia is moderate; my lungs are otherwise clear; and my heart is fine. That really shouldn't be causing the extreme symptoms I'm having: I can barely breathe, and even the slightest exertion gives me chills and gasping.
Bottom line, this all sucks, and I don't seem to be getting any better. Blecch.
This stinks, so I'll do as Quakers do and hold you in the Light.
Be well. Thank you as ever for all that you share with the world. Sometimes I forgot how much you’re going through with the prolific post volume. Thank you now for many years of insight back to cal pundit. You’re on my mind.
So sorry to hear this, and hope you start feeling better soon.
If your cat is getting petted somewhere by some diseased neighbor that might explain your new enterovirus.
You should try putting one of those camera collars on them and see what they do when they know you're not looking.
Hugs to you, Kevin!
Be very particular about the hospital visits -i'm not even certain that I want any more doctor visits or hospital care to include one or more handshakes with physicians - & nothing I'm facing compares to your lengthy search for the best treatment available for it.
And maybe more of your followers will keep that in mind when reading your posts, not just when you provide a medical update, if you don't appear sufficiently negative about developments in the second trump administration. Don't let it wear you out!
Hang in there and get better. You are irreplaceable.
Wholeheartedly agree. I hope it turns around in no time. Thinking of you!
50 years from now, they will be astounded to learn that, for a time, babies born w/o an immune system were placed into actual bubbles and it will be featured on the 100th anniversary of Jeopardy as a final Jeopardy answer.
In the mean time, aren't you being IV'd with IG?
"In the mean time, aren't you being IV'd with IG?"
I'm on Tec as well (clinical trial for smoldering MM) and get IVIG before every injection, but I did *not* get IVIG until like eight weeks into the treatment. Not sure why. I can't recall how long Kevin's be on Tec, but that could be the reason.
Google to the rescue!
https://www.pharmacytimes.com/view/ivig-supplementation-reduces-infection-risk-in-patients-with-multiple-myeloma-receiving-teclistamab
🥰 May you and KD get well and MM go into complete remission.
“apparently have a brand new enterovirus”
Bird flu, from cat contact?
Just WAG.
Wishing you a speedy and complete recovery.
Oh dear. I’m Sorry to hear all of this. I wish there was something the tribe could Do to make you feel better. Sending my best wishes for your recovery to you and Marian, whom I’m sure this is very difficult times.
There are undoubtedly more prominent sites posting this, but the item about trump's coice to head the pandemic office he had saud he would eliminate is a veterinarian, not a medical doctor for humans - all the better tp prescribe something that will treat tapeworms in horses in his valiant effort to make America healthy again, assuming that RFK, Jr. is confirmed.
Not very comforting, as the news above that is about measles outbreaks in 5 states, & sickness due to food. We may eventually need another Sinclair Lewis.
Once out of the hospital, I'd highly recommend introducing maitake and oyster mushrooms to your diet, for the "immunomodulatory" benefits (among other things). These are better tasting mushrooms, but I'm not a big fan so instead get the mushrooms bags over at 99 Ranch (or Whole Foods), and throw them into a standard broth with onions, carrots, celery, and all the normal stuff. The only variation I do aside from adding mushrooms (and galangal, also available at 99 Ranch), is the onions should be thrown in skins and all (I quarter them).
Then I freeze the broth in those big broth freezer trays you can order off Amazon, and use them for sipping, soup, and cooking, so I can make a big batch and not have to keep doing it except about once a month (if that, am not sick so maybe should consume more in this case).
Shiitake is also really good and more easily found outside California, and supplements through Fungi Perfecti and Paul Stamets (among others)
https://www.sciencedirect.com/science/article/pii/S0753332222002906
https://pmc.ncbi.nlm.nih.gov/articles/PMC11068609/
https://www.researchgate.net/publication/236062574_Immunomodulating_Activities_of_Cultivated_Maitake_Medicinal_Mushroom_Grifola_frondosa_Dicks_Fr_SF_Gray_Higher_Basidiomycetes_on_Peripheral_Blood_Mononuclear_Cells
https://bristolfungarium.com/blogs/blogs/the-great-immunomodulators
https://awcim.arizona.edu/podcast/episode07_stamets.html
That won't really help if the immune cells aren't being made, Jimm.
I'm not describing it as a cure, but as an adjunct, these medicinal mushrooms are very good for you in a myriad of ways (and so are onion skins, onions, galangal, fresh garlic, which can also be quartered with the skins on, etc.), easier to consume as broth or soup when feeling ill or weak, and delicious.
https://www.foodandwine.com/seasonings/alliums/save-your-garlic-and-onion-skins
Crissa is right of course, but I, maybe oddly, very much appreciate Jimm's recipe. I am still not quite sure what it means...but it is interesting. Of course, good luck to Kevin.
Gotta say, your symptoms sound alot like my previous cat as she suffered through chemo. Doctors said she was doing good, but there's just alot of pressure on the body and the immune system.
I am sorry to hear you are not feeling well. I hope you get better soon
A thousand and one best wishes to you, Mr. Drum.
Sorry to hear this KD. Hope you improve soon and don't end up like John Travolta.
Thanks for the update, good luck & best wishes 🤞
Bravo for keeping us posted on your health and other things during your awful illness. It must take a lot of energy to get the posts out. I hope you get better soon.
Rest and recover Kevin. Maybe it's time for you to mask up constantly and avoid those floating pathogens. Don't fight the need to rest. Pulling for ya!
So sorry to hear about this. We are all rooting for you.
Well, that sucks. Kevin, have you had a pulmonary function test (PFT) to see how your lungs are actually working? You could have an ok CXR and still have major difficulties breathing. This happens with diseases like asthma and COPD.
Also, I'm sure they told you that the CXR results for pneumonia can take days to show up after symptoms start.
Chemo can damage the heart, specifically the mitral valve. Distension of the mitral valve (with backflow) could be the reason you are having trouble breathing. The hospital should have ordered a CT scan or ultrasound for the heart.
Hang in there Kevin. Sorry you are miserable. Hopefully the breathing issues begin to clear up soon.
Not my business, but you might ask your oncologist to visit you in the hospital. Perhaps he or she has seen things like this before and can provide some perspective. Might at least help with peace of mind.
I would be happy to mail you some good Maine chaga. It grows in birch trees in the woods around here.
If you don't know about it, please google it. Unless you have aspirin sensitivity, it will not harm, and will very likely help.
All I can say is wish for better days for you, and thanks for years of past good days.
I hope the hospital has good chicken soup.
We all wish you well. You need to get better soon before Trump undoes the medical care system in our country. If I was only kidding...
Take care of yourself and hope this passes soon.
Do hope that your recovery begins soon and is quick! On the bright side, medical professionals appear to have done a pretty good job in dealing with the issues that you've presented them thus far, and I'm betting that they will continue that streak. We need more voices like yours even though it may seem sometime that you're a voice calling out in the wilderness.
This is awful. And worrisome. Just know there are people that do think about you.
https://youtu.be/azMA6upM5-Q
👍👍👍👍👍
A difficult post to read. Great admiration for Kevin's presentation and level-headed comments - which is more than I could ever do in similar circumstances.
Not sure what to say except be calm, measured, and - as much as possible - hopeful for better days.
I empathise with the suspicion that "he doesn't seem to bother looking at test results until I'm actually in the office with him". I swear my annual blood tests could reveal I was on my last legs unless urgent measures were taken, and my GP would never know until I was in his surgery for an appointment, when he would ignore me for five minutes while he looked up my file.