I’m saddened and sorry for all those who have been suffering from pneumonia and respiratory infections. Been posted of late.
As a physician who knows better, I wish I’d followed my on advice to do ALL of the following
1. Test right away for COVID
2. Get a complete viral nasal swab to be tested by PCR for any treatable viruses
3. Get DEEP sinus swabs to test for
Bacteria
After sinus cultures were finally done and grew Staph, Pseudamonas Citro. I was finally started on the correct antibiotics after suffering for months. Within 7 to 10 days I feel better than I have in over six months.
Fungus ( I was ill for 4 months having been given “ shoot from the hip” trials of antibiotics before I was tested for what turned out to be a nearly fatal fungal infection
AFB or reactivation of TB as even asymptomatic exposure can lead to active disease when immune compromised
The same applies for pneumonia or cough. The sputum, preferably taken from deep suction should be done for the same test listed above. There are so many things that can cause pneumonia and you have to make sure you are treating the correct one or you won’t get better. Taking the wrong antimicrobial can actually kill the normal bacteria and the infecting bacteria or virus or fungus more rapidly and cause deterioration.
One last condition that everyone should take into consideration is acid reflux otherwise known as GERD. The acid can actually get into the tracheal area and lungs, especially while sleeping flat on the back and cause significant irritation to the lungs and pneumonia or asthma. Make sure you have properly treated for GERD If you have acid reflux type symptoms.
Good luck and God bless all of you
Ski pro
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skipro
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Thank you for your excellent suggestions. I would like to add one more. If you have a persistent cough, get a d dimer checked. A simple blood test that indicates abnormal clotting. After 3 months of treatment for pneumonia, I was finally diagnosed with left leg DVT and bilateral PE's. We CLLers are at a higher risk for blood clots.
Helpful advice. Do you think GPs are typically resistant to this type of early exploratory approach? My sense is GPs sometimes treat CLL patients similar to the average patient walking in the door. Is the approach you recommend more costly than gradually trying different drugs?
All suggestions very sound. I just wish they had been available to me as a matter of course. As a NHS patient the immediate response seems to be to treat with broad spectrum antibiotics as ‘a scatter gun’ response. As a CLL’er I do usually have this antibiotic approach offered to me even for presenting viral infections in case of bacterial change or addition. I’ve found it hard to have swabs and/or sputum samples taken. Also, my haematology team do not get involved with respiratory infections etc. They are seen as the domain of primary care (GP).
However I certainly tested for Covid because I wanted to protect the medics seeing me. Amazing how many had coughs and colds yesterday but not a mask in evidence.
Newdawn, I've had this idea that if the CLL Society or this organization created official letters signed by oncologists or infectious disease etc. could outline best practices that would alleviate suffering while at the same time, save a lot of money on treatments that aren't going to work.
Any idea if there is someone in this group as an "official" director of the LLS or something that could do this.
I understand what you’re trying to achieve and why Skipro but having worked in and around the NHS for 32 yrs, I can see some obvious issues with what could look like a ‘blanket’ clinical response/protocol and it immediately starts to collide with professional impartiality…and egos! Best practices often require best resources and in a heaving, packed assessment unit yesterday with people sitting around anxiously for over 5/6/7 hours, the medics seemed to be doing the basic safety protocols to keep the system from going into total overload. I suspect that every serious chronic sufferer of a hundred and one differing conditions would want their clinical uniqueness embraced and to come in clutching a practice protocol from their overarching charity. This need to seek special consideration was so in evidence during the pandemic when the battle for exceptional clinical identification was hard fought.
I was very aware in my discussions with the medics (of all grades yesterday) that their haematological understanding may have been rudimentary. As a result I tried to advocate for the additional needs I felt I presented like hypogammaglobulinaemia. I asked about identifying specific pathogens, D-Dimers and the possibility of a fungal infection. I received fairly vague reassurances that were not supported by action. I still received the assessment protocol of bloods, Covid test, chest X-Ray, bloods, ECG and examination. All good stuff! I somehow suspect that the doctors on these units would argue that they operate ‘best practice’ as an individual patient right and may even find it professionally patronising to be told they need to take a different approach with the immune compromised (for whatever reason the compromisation exists).
I don’t want to sound defeatist on this because I share the frustration of inadequate and inappropriate testing when we are a group whose ‘secret defender’ doesn’t always react predictably. Fungal infections particularly concern me given the experience of our late, lamented Canada Chris. Maybe the American system is different and patients can request an identified battery of tests but I know that presently in the NHS, we struggle with a system where expectation can collide frustratingly with reality. That includes for the beleaguered GP’s too who would want more for us but are a bit ham-strung by what they can order at the moment.
I just wanted to add that this doesn’t mean that the blood cancer charities are not working and advocating hard at a systemic level with the health authorities to represent the unique clinical needs of blood cancer patients.
Newdawn, your analysis could not be bettered. It supports my own long held experience with our NHS which, was and could still be, the best if only there was the political will to support it.
outstanding description between the ideal and reality. In our community and state, we as physicians have fought hospital administrators, insurance companies and top levels of govt for the full 40 years I’ve worked because the reality is that profit margins and business trump good health care.
The travesty is that good medicine in the long run actually would not only save $ but the lives and or wellbeing of patients.
I just hope that somebody that reads these things knows what to self advocate for and at least some of the time get it.
Often, I find that there are existing guidelines that might apply. The big difference is that immune compromised often need longer dose series of anti-microbials. I would also say that making contact with an experienced infectious diseases doctor might help when hospitalized. The hospital usually has one on staff, but they're not contacted unless someone pressures. Even then, the staff doctor could be young and unfamiliar with CLL. So finding one in the community is a trick to try, if possible.
The COVID Pandemic highlighted specific needs for various immune compromised people, but alas, they're filed under COVID, and no longer even examined. In hospitals I find that all they triage is neutropenic or not.
In the U.S., I think we need to get through to the IDSA (Infectious Diseases Society of America) :
When you feel like it (if you feel like it), I'd appreciate more detail about proper treatment about GERD.
I complained to my PCP about a lingering pain in my throat that far out lasted a small viral incident. But I have become far more reactive with acid flare ups. Some nights I feel like I've been pepper sprayed, trying to breathe or swallow is attention getting.
I'm sure that I need more than an antacid, besides what good is Gaviscon for prevention? Relief yes, but I fear esophageal cancer developing and that could become inoperable.
Obviously, I'm not asking for medicinal advise but more like who would I need a referral to see, what steps are proper in presenting my concerns to do this correctly?
If you don't want to be public you can always chat function, or if others wish to chime in please chat function as I do not want to hijack Skipro's post and diminish its value.
There are a few things that don't require a physician.
1. Don't eat a big meal before bed or late in evening. Avoid chocolate, caffeine etc.
lose weight as the belly fat can force the stomach contents up into the esophagus.
2. Elevated the head of bed with blocks or multiple pillows or sleep paratially reclined in a recliner, or get a bed that allows you to elevate the head and feet.
3. OTC meds like pepcid or prilosec or Zantac or Zantac 360 taken regularly can reduce the acid production.
4. Tums or rolaids or mylanta or even 1/2 teaspoon of baking soda in 8 oz of water can neutralize the acid that comes up acutely. I drink the baking soda fast as it tastes nasty.
5. See a doctor. A GP can prescribe stronger meds like pantoprazole or combinations of meds like Pantoprazole plus pepcid.
A Gastroenterologist can look down with a scope and see any pre-cancer caused by reflux, or ulcers or anatomic abnormalities. For example, I had an incompetent lower esophogeal sphincter so the door between stomach and esophagus didn't close. so I had a laproscopic nissan procedure which basically wraps some stomach muscle around the lower esophagus to replace the function of a bad sphincter. My Gastroenterologist prescribe Baclofen, a muscle relaxant that actually causes the sphincter to close and this has worked best for me of late.
Could I add one word of caution to your excellent suggestions? If you have been recently hospitalized and/or received substantial doses of antibiotics, you shouldn’t take omeprazole (prilosec) in case you have the c.diff bacteria in your gut. I have been battling a c.diff infection for close to a year and was told that omeprazole enabled dormant c.diff bacteria to flourish.
Great Information and Suggestions! Early detection where that extra step is taken to isolate the specific bacteria vs just taking a broad spectrum antibiotic is so important. Knowing to ask for this at a PCP appt. and advocating for our care is critical to a quick recovery. Thank you for posting
The subject of your post is of great interest to me as like many I have had repeated respiratory infections and Pneumonia with sepsis from the early days of my CLL diagnosis.
I have always been very nasally and chesty but my most recent episode has lasted over a month now with a persistent cough, at times very productive.
I did contact my GP a few weeks back and asked if I could do a sputum test she agreed but also prescribed antibiotics.
The sputum test proved negative but I put this down to a poor specimen which consisted mainly of stomach acid which is something I have suffered with for most of my adult life as GERD which was considered to be a symptom of my Behcets.
What interested me from your post was, you saying that GERD can actually get into the lungs and cause significant irritation to the lungs this was unknown to me, but could this acid affect the sputum test to become negative?
I have in the past been prescribed all the medications for this condition eventually being on PPI medication for so many years until it became troublesome at which point it was stopped.
I now just take regular antacid treatments such as Gaviscon which does help a bit.
I do have an appointment with my Haematologist tomorrow and will ask for her opinion regarding my current symptoms.
Many thanks Skipro for your response and advice. I will raise the issue with my GP although I would not want to restart PPI medication again if at all possible.
Do you have a pulmonologist on your team? With recurring chest infections perhaps this is wise. I do know for suspected deep lung infections, other tests like bronchial washing/brushing may be useful. A pulmonologist would be experienced in these and other lung problems.
When I had the lung problems, that was who they sent me to. Originally to monitor the lesions, to see if they could possibly be malignant, or another infection after Covid testing was negative. In my particular case, after the second visit & basic lung assessment, I was told if it got worse he would consider a deep bronchial specimen to rule out fungus or bacteria (I wasn't producing sputum). But it cleared up.
Many thanks for your reply. I was under a respiratory consultant early on in my CLL diagnosis prior to and during my chemotherapy treatments.
As a consequence of repeated Pneumonia’s I was diagnosed with Bronchectasis.
However, my respiratory care is not ongoing but requires a GP referral when the need for their involvement occurs.
This morning at my Haematology appointment it was agreed that I should provide a fresh sputum sample and have a chest X-ray, but the results of both will not be known for a week or so.
Very good timing in your post. I am seeing a Gastroenterologist tomorrow. I have GERD and am in the small percentage of people who experience blurred vision on PPI. I have fairly constant pain in my chest (not heart related). So I am looking forward to what he has to say.
Yes, I was surprized because we use Baclofen in patients with severe muscle spasms but apparently it has the opposite effect on GI muscle. It causes the lower esophogeal sphincter to tighten and thereby keep the stomach acid in the stomach and out of the esophagus, throat and back down the trachea. It has helped me!!!!
I’m sorry the new valve stopped working. I’ve been working on losing weight (lost 10lb, 25 to go), and eating bigger lunches and smaller evening meals. That is helping but until recently, exercise was harder than it’s been. Getting into shape has been happening at a much slower pace. And one of the things I do when stressed is to get up at 2 am and eat ice cream! This definitely hinders weight loss.🤣 We’re working on reducing stress but with a large family, there’s always someone in a crisis somewhere.
Wow is all I can say but so glad that you got relief finally. I had the 3 ER Visits in 3 months for chestpain when I started treatment & none of my doctors would prescribe antibiotics. After getting a 10 day dose I was great for the next 3 months until we increased my dose of Zanubrutinib from 80mg daily (1/4 dosage) to 80mg twice a day. This time the Pleurisy type pain was treated promptly & I have not had any respiratory infections since but I stay masked & I am unvaccinated. I still require any healthcare professional to mask, anyone in my home & definitely anyone in my car. As a nurse I just truly believe in prevention.
I however am having extreme bone pain, my Malunioned Left Hip Fracture from 2011 now has bone on bone & my Right Foot has a collapsed arch PTTD. I purchased a cute rolling walker & walk with a group 1X per week so far. I teach my own Low Impact 60min Class on Zoom 1X per week. I attend my partners Pilates class 1X per week. And I work out in my Homegym the other 4 Days or more per week, all low impact & mostly non weight bearing stuff.
I will wrap my Hip, Ankles & Back with different braces plus compression wear that all minimize any pain. However 3 weeks ago I got hit with stabbing left lower lateral rib pain 10/10. My PMD ordered xrays that said Thoraic Spondylosis unchanged but there is a serious change. Anywho I messaged my CLL Specialist & she agreed about a CT Scan which I scheduled. But my concern was about BTKI causing 2ndary Multiple Myeloma & she is seeing me next week after the CT Scan to rule it out.
My question is that I am reading about Fungal situations which I experienced with 2 skin rashes & on my GYN exam. I have 2 different creams & was instructed to take probiotics which I upped to twice a day now. On treatment we are open to 2ndary cancers I know but also Autoimmune Diseases too? I want to be checked for RA since I was on the borderline years ago & no one discussed it with me. I know my weight gain plays a big part but my whole body hurts. I had to drop down to the 1/4 dose again & I will see how it has affected my labs but my pain has dropped also from 10/10 to 5/10 which is bearable 🙌🏾
I know we must be thankful but this ain’t no walk in the park lol 🤦🏽♀️
Mother’s Day with the Twins, they tried & enjoyed my Plantbased Meal. Protocols in Effect
Awe, looks like a great mother's day, plant based and all!!! Contgratulations.
For multiple myeloma, the best testing is called an SPEP ( serum protein electrophoresis) which is a blood test, or Bence Jones proteins in the urine.
Just wondering if Acalabrutinib would cause fewer side effects for you as it supposedly has less off-target action than Zanu.
I've had this theory about all my bone pain. That's where the marrow is and that is where the killing of CLL cells goes on and maybe the combo of activity plus CLL killing action leads to the pain?
I've been told by my first CLL nurse in 2018 and recently by a patient, then confirmed by researching, Loratadine or Claritin relieves bone pain during treatment in up to 33% of patients.
Yes thanks, I love to see people enjoy my Plantbased delicious food while I still remain safe. As soon as the weather breaks, Healthy Picinics will be the next venture!
The CLL Specialist is all over it even though I reduced our visits to 1-2X per year but also as needed too lol. I thought I was stable🤦🏽♀️
I just workout for my mental stability, for flexibility & to overcome the horrible stiffness. I will dance on my Vibration Plate & 30min on my Stationary Bike at 5/30 Resistances, if that much. I focused on stretching on my Totalgym, Seated Leg Magic & rarely on my Row Machine. I will use the Pilates Wheel & Stability Ball for total body stretching. But when my Back starts spasmic waves of pain the Teeter Dex II or Skybike work best.
I am familiar with those antihistamines but funny thing, my allergies have waned with my use of a surgical or clear barrier mask when outside routinely. I will stock up on them though.
Even switching back to Acalabrutinib makes sense because I did find it milder except for them damn headaches. Right now I’m on 80 mg daily of Zanubrutinib & I feel more like a human being again.
I literally put on 40lbs for the 8 months I could not work out & all the steroids. I focus on reducing my caloric intake these days & just glad that I am not still increasing in weight. I rely on nutritionally dense foods. Thank you for all your good advise & I will run it past my CLL Specialist when I see her next week after my CT scan.
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Update to My Original Post Stopping Acalabrutinib 
Pulmonologist today in Tampa re a lung infection (mycobacterium avium complex) 
