Why is pneumonia so often a cause of death among CLL patients?
Wondering today, for many reasons.
In part because I was out in extremely cold weather for a few hours and was at the same time sweating from some hard work.
A PET scan a while back showed a small pocket of "maybe" infection. not confirmed
...And of course, no immunity to covid despite three vaccines is always of concern.
thank you to respondents.
Humaniquarian
I suggest that the answer is simply a reflection of the fact that the risk of pneumonia becomes more common as we age, particularly if we are immune compromised. Pneumonia is a lung infection which can be caused by a wide range of bacteria, virus and fungi. The number suffix at the end of the pneumovax23 and prevnar vaccinations simply reflects the number of bacterial serotypes covered by the respective vaccinations.
This introduction gives you an appreciation of the challenges remaining in conquering pneumonia and why it may still be known as "the old man's friend"!
pneumonia.biomedcentral.com...
Neil
Hi Neil, I had 1 pneumonia vaccine isn't it 2 shots within a period of 3 months? I asked the tech about this and she said it was only one shot. I will call Dr. Lamannas office on Monday to ask questions because this has been bothering me. Is it effective for us cll patients? I heard that the protection is small even with the shot. Pneumonia, infections, secondary cancers and many other things cll can cause this is why im the way I am mentally. I can't handle it.
Lydia, it's at least two shots, with the number and spacing depending on which one you had first per this post: healthunlocked.com/cllsuppo...
Vaccine effectiveness varies, but is considered worth the risk compared to facing the infection without even a slight amount of vaccination protection.
I hope taking proactive efforts can help you to relax.
Neil
Thank you Neil....
AussieNeil is right - at least 2 shots - I have had 3, and just as I was to be tested for response Pandemic hit... They did not hurt - and I had not bad reaction. Jig
I haven’t looked at infections much, but I have read studies on CLL and secondary cancers. The number varies but for most cancers it is around 2.5x normal. That sounds huge, but I think it is important to remember that at your age the number 2.5 is multiplying by is a lot lower. If you owed me 2.5x a million dollars, that would be stressful. If you owed me 2.5x a penny, you could probably manage it 😀. Nothing in life is guaranteed, but being younger is a big advantage in this area! Infection wise, well - you just conquered COVID - surely that is a good sign of what your body can do?
Thank you BobbyFour.... im up at 12:48 and I can't stop these 3 letters (CLL) that goes through my mind every single day. I feel like im being punished but I know it's just awful things that happen to us in life.... things we can't control.... thank you for your comment.
I have had 1 pneumococcal vaccination in 2007, should I have had another?
Yes, because:-
1) It would have been the less effective pneumovax23 vaccine you had in 2007, so you'll benefit from the significantly better prenvar13 that has since become available or better still the new prevnar20, which covers more serotypes fda.gov/vaccines-blood-biol... Due to the immune compromising nature of CLL, even back then the official recommendation was to have a booster pneumonia vaccination 5 years after your first.
Neil
Thanks again Neil.
I just wanted to share my recent experience with the pneumonia vaccines. I have had the Prevenar 13 a d I receive the Pneumonia 23 every 5 years as advised by my doctor. My last Pneumonia 23 was July 12,:2021. On Friday I attempted to get the Pneumonia 20 as I have waited over a year for it to become available and I was told that I must wait one year between the Pneumonia 23 and the Pneumonia 20 and so I continue to wait!!!
Two years ago I had two different types of pneumonia in both lungs at the same time and my doctors were able to keep me out of the hospital. I had to go in daily for 10 days for various treatments and yes I was rather I’ll and oh so very weak and it took me six months to get back to my normal but they did great keeping me out of the hospital. Hey feel they were able to do so because of all the pneumonia vaccines I have received over the 33+ years that I have had CLL. Of course the IVIG infusions I receive every 4 weeks helped too!
Panz 🙂🙏☘️💕
wow that's a lot to deal with Thanks for the info',I'll check in with my onco' and see what he has to say . I'm coming up on five years since my two pneumovaccines. Am I missing something ? Is there now an additional vaccines(s) for pneumonia prevention other then the two pneumovax I got when I was diagnosed?
Thanks in advance
"Humaniquarian"
Robert
Per my earlier reply, the FDA recently approved prevnar20, which covers 7 more bacterial serotypes than the older prevnar13. That widens your degree of protection. See healthunlocked.com/cllsuppo.... Also due to the different vaccine type, there's a higher seropositive response from prevnar vaccinations than pneumovax vaccinations. That's very important for immunocompromised folk like us.
Neil
where are you ..I'm in the states..
If I were you I would get the Pneumonia 20…..it is very very new and some pharmacists are t even aware it exists but it became available at my CVS here in Florida and where are you in the States?
colorado
Beautiful place. I have family there in Paonia and have visited Colorado many times
I had the 2 vaccines in 2009 shortly after being diagnosed. I have asked on several occasions about the need for a booster , most recently last September but my GP said it wasn't necessary. I 'm still in W and W with relatively low blood counts and looking at old letters found I was 13q deleted and mutated IGHV
Per healthunlocked.com/cllsuppo... about 4 years ago "Prevnar13 has only recently been put on the recommended list for CLL folk, and some GPs are not aware of this as it used to be only for infants."
You'll be just one of far too many in the UK who need to draw their GP's attention to updates in the UK's “The Green Book” (official UK source for vaccination advice) which recommends we have a prevnar booster. Others have required the support of their consultant and dogged persistence to get their GP to vaccinate them with Prevnar. It shouldn't be this difficult to proactively reduce our risk of death from pneumonia!
Neil
I mentioned this with my consultant a few years ago and they either thought I didn't need it or referred me back to my GP. Since the beginning of the pandemic I have only had telephone consultations with the haematologists
I have recently had a written confirmation from my gp that there is only one jab for pneumonia available on the uk nhs and that is a once in a lifetime affair ..! this is in spite of my sending chapter and verse from the green book saying exactly what you have said ...I am at a loss as to what to do now apart from get my consultant to write to him telling him whats what !
Quite a few members have had to do just that - present a letter from their consultant to their GP. It works!
Neil
Pneumonia is a big problem for all of us - the well and those with poor immune system responses. Pneumococcus being the most frequent bacteria cause the most harm - hence Pneumovax.
With the immune system complexity at the level of astrophysics coupled with the incredible craftiness of infection 'germs' the situation of dealing with infection is complex beyond comprehension.
There remains much we can all do with life style and common sense. The most severe command I received from my Haematology Team - is not to ignore unwellness, a fever, a new cough, a rash etc that may herald infection. Get checked out by a qualified medical Dr in a hospital with the right facilities. Our GPs need to get this into their heads too! My Haem Team told me to come direct to the Hospital if I am worried about infection and for any fever over 38degC.
I hope your investigation goes OK with the pocket - I am assuming lung. It is good you have hooked the attention of your medics.
Best wishes! Jig
In addition to other factors people have listed, excessive fatigue interfering with the ability to get good aerobic exercise will affect lung tissue long term. Our lungs need exercise to continue to function optimally too, not just our heart and muscles and bones. In addition to CLL itself affecting pulmonary tissue (rare but possible, according to 2017 study)
pubmed.ncbi.nlm.nih.gov/282...
Thanks SofiaDeo.
Do you do anything for lung health, like cardio?
I was a long distance runner for almost 40 years but no longer run.
I can still hike in the hills here in Colorado without much difficulty.
I see your notes and concerns often. I am sorry you have so much anxiety.
I do not have CLL related anxiety but do know what it is like to suffer with anxiety.
All in all it does sound like you get through all the rough spots despite your worry and anxiety, and that take strength and courage so give yourself some credit.
By the way I was born in Bronx but moved out west fifty years ago.
warm regards and thank you for your response.
Robert
I have indoor stand for a bike, Bowflex, Skier's Edge for cardio; Vibra-Pro for massage/lymphatic drainage; inversion machine to straighten my spine & help with neck tension; Fluidity fitness barre and floor mats for yoga/stretching. Outdoors I hike (especially up hills), bike, and want to ski again when the pandemic issues resolve. Lately it's been mostly walking when it's too cold other than "I have to take my dogs out". And when I am really stressed like now, it's had to motivate to do other than walk the dogs.
When I am stuck in bed, using an incentive spirometer gives some lung exercise as well as assessing lung function. At a minimum, this reassures me I haven't lost a lot of lung capacity. Plus if there ever is a drastic decrease, I would know to hightail it to the doc ASAP even if I felt fine. They aren't expensive & IMO we should all have one & use it at least weekly, noting the values. I feel like I have lost strength & muscle mass this past decade, especially last year with the 6 month pneumonitis, although I test "above average" in my age group. And even with the pneumonitis, the tech doing the lung testing asked me if I was an athlete. He said he can tell, even when we "feel sick" and think we are having trouble breathing, our tests don't show as many changes from "normal" as sedentary folks I guess.
So IMO everyone here talking about exercise, and how important it is, are absolutely correct.
Hello humaniquarian
Short answer is CLL is a blood cancer and more importantly, a cancer of the immune system.
We are all different with varying degrees of immunity, but antibiotic/antiviral treatment don't help much even in hospital settings. Underlying health conditions as we age don't help either. Blessings.
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