Pneumonia

[annabelle63]

Has anyone had pneumonia and if so did it last long. Dr said bed rest because of the CLL

[Sepsur]

Don’t read my version of pneumonia unless you take a tranquilliser 🤣🤣. Make sure you take your temperature every 2hrs & measure your Obs. Small oximetres can be bought over the counter. If temp goes over 37, take paracetamol and head ASAP to GP.

[Newdawn Administrator]

Hi Annabelle,

I’ve had very severe pneumonia and it was incredibly nasty. Unfortunately, in my case, I developed sepsis with it and I was hospitalised twice.

I appreciate you’re not from the U.K. but the NHS guidance on pneumonia is very sound;

nhs.uk/conditions/pneumonia/

Pneumonia is not to be messed with especially in the immunocompromised so I’d follow your doctor’s advice on this. Try not to lay too flat however as it encourages congestion and don’t remain too immobile.

It took me 3 months to feel fully well again and I needed a follow up XRay 10- 12 weeks after hospital discharge. The follow up is important.

Hope you feel much better soon,

Newdawn

[Cllcanada Top Poster CURE Hero]

There are many types of pneumonia. My current one is aspergillus fungal pneumonia or aspergillosis...

en.m.wikipedia.org/wiki/Asp...

en.m.wikipedia.org/wiki/Fun...

I’m just about 6 months with this, and sinus running 24/7 ... no fever, just coughing fits that can last 15-20 minutes and the occasional nose bleed, other than that I feel fine 😀

I’m being treated for it at the cost of about $5,000+ a month...to contain it going anywhere else in my body, but at this point, its pretty chronic and preventing very much needed treatment for another aggressive secondary to CLL cancer.

So, not all pneumonias are the same...

~chris

[Stretch1 in reply to Cllcanada]

Yikes - other than a trashed immune system, how do you think you contracted asper? How’s the battle - hopefully you’re winning -

[Cllcanada Top Poster CURE Hero in reply to Stretch1]

Well its intrenched... now the treatment focuses on stopping it going systemic....kidney, testicles and brain... invasive stage is nearly always fatal if left untreated.

You breath in 800-1000 aspergillus spores every day.. the neutrophils stop it from taking root...

Aspergillus mold is unavoidable. Outdoors, it's found in decaying leaves and compost and on plants, trees and grain crops. Inside, the spores — the reproductive parts of mold — thrive in air conditioning and heating ducts, insulation, and some food and spices, (marijuana)

Everyday exposure to aspergillus is rarely a problem for people with healthy immune systems. When mold spores are inhaled, immune system cells surround and destroy them. But people who have a weakened immune system from illness or immunosuppressant medications have fewer infection-fighting cells. This allows aspergillus to take hold, invading the lungs and, in the most serious cases, other parts of the body.

Aspergillosis is not contagious from person to person.

How the immune system prevent this...

iai.asm.org/content/74/12/6...

mayoclinic.org/diseases-con...

Medical Marijuana.. be certain you use ONLY IRRADIATED types

ncbi.nlm.nih.gov/pmc/articl...

[Yuck in reply to Cllcanada]

Thank you Chris for the links. The Mayo Clinic one is most helpful. I am so confused about the immune system. If Neutrophils are good and whites are under control during treatment with for example, Ibrutinib, is an individual still immune compromised or is the immune system reasonably well?

[Cllcanada Top Poster CURE Hero in reply to Yuck]

It varies widely.. but CLL patients are always immunocompromised. It is very treatment dependent as well... rituxan can cause pretty bad neutropenia in some patients months after treatment... FCR etc, can suppress T cells for a year or more... a situation not unlike an HIV/AIDs patient... and so on...

~chris

[Stretch1 in reply to Cllcanada]

Just read your most recent post concerning link between asper and inbrutinib - so I’m assuming you’re taking inbrutinib or did?

[annabelle63 in reply to Cllcanada]

Thank you Chris

[MsLockYourPosts Passed Volunteer]

DON'T take any fever reducer until you get to the ER unless specifically told to do so by your hematologist! It will mask symptoms that the doctors there need to see.

[AdrianUK]

When doctors say “if it doesn’t get any better come back or go to hospital” they never mean it more than with pneumonia. No question that it can develop into something very nasty indeed. So be careful. It took four lots of antibiotics before mine got treated and it also went sceptic. That’s how I discovered I had cll. Don’t panic. But pay attention to pulse temperature and if you can get one the pulse oximeter. And if any of them are dodgy (pulse greater than 100, sats too close to 90% or even below, or temperature raised) don’t hesitate to go to hospital. But I would only go to a hospital with experience in treating haem patients. I am under UCLH and it was only them that sorted my pneumonia out. But having said all

That even in cll patients pneumonia can sometimes be much milder than our horror stories!

[annabelle63 in reply to AdrianUK]

Thank you Adrian..

[ladyprescott]

Very nasty. Have you had the pneumonia vaccines? Hope you feel better soon. Carole

[Mwagne]

I came down with pneumonia and was diagnosed with CLL after my white blood cell count didn’t return to a more normal range. I suspect I had CLL for awhile and the pneumonia came after. I went close the sepsis and the ER doctor said I was within a couple of hours of not coming out alive. My temperature was near 104 degrees but they managed to get it down quickly with massive IV and antibiotics.

My energy levels are not what they were but I feel ok and am on watch and wait with my CLL treatment, no medication. Don’t mess with this and follow the doctors orders.

Mike

[ladyprescott in reply to Mwagne]

Hi Mike....Yes I've had both of the pneumonia shots for the most prevalent kinds of P. I too can look back to 2002 blood work and see that my neutrophils and lymphs were changing and through all the doctors I saw and two short hospital stays where blood was drawn, I was never told about the neuts and lymphs. I was diagnosed in August, 2012 when I went to the doctor not feeling well, had a blood draw, and it was 11,100. Since most offices now have computers I was able to look at the report (2012) and see an 'H' for high just below and asked my GP what that was and she said I needed to see a hematologist/oncologist. Since I'd done medical transcription, I knew immediately what I had, just not what kind. Bottom line, yes you have had this for a while. If doctors would stop looking at just the white and red count and delve further into the report they would see if anything else was showing up. At least I had 10 years of no worry. Take care and I hope you are feeling well and stay that way. Keep ALL of your blood works up sheets. Ask for a copy each time blood is drawn. That way when you really need to look back, you'll have them. Write any time. Carole

[Mwagne in reply to ladyprescott]

Carole,

Thanks for your post. Prescott-wow, went to Saquaro High in Scottsdale too many years ago! Great area.

My blood tests are posted to my account so I should have access to them and will check. They ran some DNA tests when I was first diagnosed and sent them out for processing. I’m not sure if the same tests are always requested. My later tests were done in the oncologist’s office and were done within minutes of drawing blood. I’m still on watch and wait taking turmeric and green tea, no medication. From all the posts here the latest chemo pills seem to work well with some having side effects. Even though I have Plan D on Medicare with a reputable insurer I don’t think they will cover it since its really expensive. No worry yet.

Hope this finds you well and enjoying the Arizona spring, nothing prettier than cactus flowers.

Mike

[ladyprescott in reply to Mwagne]

Hi Mike....last week freezing here, seriously had a 32 degree night, now today was 83, go figure. It was a beautiful day and I got out in it. Spring is definitely here. I don't like it much warmer and I know during the summer it will get hot. Even at 5300 feet we will have 90 degree weather and sometimes bump 100, but just a few times. I love Prescott with our four seasons. Sounds like you're doing okay. I was on watch & wait for 5-1/2 years. Just as soon as this rash is gone I'll go back on Imbruvica, but just try 2 capsules (I have the bottle for my first round) and see if that works. Dr. O in CA says the Allopurinol could have caused the rash too, so just don't know why. When did you move away from Scottsdale? Take care. Carole

[Mwagne in reply to ladyprescott]

Oh, moved many years ago, in the sixties. My Dad was transferred back east and I haven’t been back since. While in AZ I had the chance to hike down the Havasu canyon and the Grand Canyon. Spent a week in Mexico helping to refurbish a church. Many great memories and hated having to move but, my dad had no choice. Life goes on.

Weather here hit the seventies and my seedlings are close to being moved outside. My dogs are loving the cool mornings and demand constant play.

Take care Carole, and hope your meds get straightened out. I’m still trying to get reliable input on how much turmeric to take. Keep in touch.

Best,

Mike

[SouthFloridaLady]

I have had pneumonia three times in the past four months, without fever. Two times in hospital. Oncologist wants me to have IVIGto boost immune system. Pneumonia is nothing to mess around with!

[AdrianUK in reply to SouthFloridaLady]

I had pneumonia for weeks before I got a temperature and elevated CRP and other markers of inflammation. By this point I was developing sepsis. If we are immune compromised it’s not a surprise our Systems don’t respond as well. Pneumonia in us may actually not look as bad as it really is...

[Dawn-Marie]

I had pneumonia in December 3 different antibiotics resp tx prednisone for 5 days it took a month to start feeling better. SOB with spo2 at 88%. Thought I was going to die I have a very good PA.

[MsLockYourPosts Passed Volunteer]

Go by how you feel as much as clinical signs. Both with pneumonia and sepsis my temp, pulse, and blood pressure went down, not up. When I was septic I woke up with rigors (terrible chills). My GB had labs done stat and they all came back in the normal range. As the day went on I felt worse - Friday of a three day weekend, of course, so I took myself to the ER. Not a fun adventure!