I’m new to this group and wonder if there’s anyone out there who can offer me some help and advice?
I was diagnosed with CLL three years ago I am not on treatment but still watch and wait. Over the last year I have been plagued with chest infections. Every time I go away I end up with antibiotics for chest infection. On a visit to my daughter in Australia. Last Christmas I ended up in hospital with pneumonia. I have recently been in hospital here with the same thing plus Covid!
I’m going to visit my daughter and family in January so a trip to Australia once more. Does anyone have any advice to offer on how I can keep myself safe and hopefully avoid a repeat of last year’s hospital stay. I would appreciate any help you can give.
Thank you
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Graya1
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I experienced similar issues in my early days of Watch & Wait and also ended up in hospital with pneumonia. In my case I was found to have depleted immunoglobulins (antibodies). I’m wondering if yours have ever been checked? It isn’t a standard blood test that’s carried out with our FBC. Maybe ask your haematologist about this.
When I started treatment I had recurring chest infections and needed monthly IVIG. Sometimes prophylactic antibiotics can be given instead.
I can see it’s a concern for you especially with such a long trip. I continued to travel abroad regularly but my doctor gave me a precautionary prescription for antibiotics to take in case I developed a bacterial infection.
Sending best wishes and hope you can keep the respiratory infections at bay.
Thank you Newdawn I will definitely speak to my haemotologist about that. I’ll certainly ask for precaution ary antibiotics. Thank you for your help. Tell me, do you were a face mask when travelling?
In truth I don’t wear a face mask and have taken many flights over the last few years. I actually caught Covid from a fleeting visit from someone in protective gear visiting my home (in 2021) and somehow managed to resist infection on packed planes and airports! 🧐 In truth however, prior to Covid time, I often returned from holiday with a chest infection (I was dx in 2012).
I suffered with reoccurring chest and other infections in the last year of my w&w. I was referred to an immunologist and since then have been on prophylactic antibiotics as my immunoglobulins were in ok levels. I also started treatment but this was not just due to reoccurring infections. Ask you CLL specialist to refer you to an immunologist, they are the best placed doctor to run tests and offer a solution. All the best.
I was diagnosed with CLL/SLL in 2009, from an investigation into what was causing severe neutropenia. Neutrophils typically make up about two thirds of all protective white blood cells, but when we have CLL, bone marrow infiltration, spleen enlargement and less often autoimmune complications can reduce their numbers, as can treatments. Upshot was I became very vulnerable to infections, because neutrophils are the first responders to deal with any invaders into our bodies; viruses, bacteria, etc. I actually quit attending CLL education functions because I'd catch colds during the several hours of public transport and workshop attendance. During one of those workshops, another blood cancer patient shared how her haematologist reckoned that anyone with a compromised immune system had a 100% chance of picking up an infection after an hour on public transport. I've no idea how that calculation was done, but obviously our risk of infection is going to be proportional to how long we are sharing commonly breathed air and the number of people we encounter. There's no denying that SARS-CoV-2 was primarily spread around the world by air travelers.
I've covered how our immune system works in this pinned post, healthunlocked.com/cllsuppo... but basically, in addition to the protection provided by physical barriers and filters (skin, mucous membranes, nasal hair masks/other personal protective equipment), it's our neutrophils and other non-lymphocyte white blood cells that provide innate immunity. Our T lymphocytes and antibodies produced by our B lymphocytes provide adaptive immunity to threats we've experienced before - or through vaccinations that teach our adaptive immune system about yet to be encountered threats. Unfortunately, CLL compromises our immune system's ability to adapt to newly encountered infections, so we don't respond as well to vaccinations as healthy folk. CLL drives T cells to exhaustion and suppresses plasma cell production of antibodies, so it's fairly common to develop hypogammaglobulinemia (low IgA, IgG and IgM immunoglobulin/antibody counts when we have CLL. IgA concentrates in our mucous membranes, so if we have low IgA, we are at particular risk of respiratory infections.
A few years into my journey with CLL, after picking up gastro at my specialist appointment, despite carefully washing my hands and avoiding door handles, I began wearing a mask when socially mixing. That worked well, though notably I ended up in hospital back in 2018 for a week after Christmas, because I forgot to wear a mask in the busy, pre-Christmas shopping.
With respect to travel to/from Australia to Europe, I've done the 20+ hour trip four times pre-pandemic, always wearing a mask - and at that stage it was just surgical masks. I never picked up a respiratory infection on those flights and that was despite being moderately to severely neutropenic. Nowadays I'd wear a respirator (N95/FFP2 or better). Wearing a well sealing respirator will block any viruses from getting into your airways, even the newer COVID-19 variants, which have just reached Australia, so COVID-19 cases are again on the rise here.
Thank you so much for this info. We’re you ever recommended prophylactic antibiotics? I will most definitely find myself this respirator before my long flight.
I recommend you talk to your CLL specialist and possibly an immunologist per Poodle2 's good suggestion to determine why you are at increased risk of respiratory infections. If you have low immunoglobulins, particularly low IgA, then you are more at risk of respiratory infections, but it depends on how well your immune system works and what specific IgA titres against respiratory bugs you have. Are you up to date with your pneumonia vaccinations? healthunlocked.com/cllsuppo... I've been on regular IVIG/subcutaneous IgG since 2017 after several hospital infections and that no doubt also helps keep my infection risk down.
Keep in mind that antibiotics only help with bacterial infections, which can develop secondarily to viral respiratory infections. Some CLL specialists do prescribe prophylactic antibiotics, but there's the risk of bacteria developing resistance, which actually put me in hospital with a life threatening infection decades before I developed CLL. (A year prior, I'd had powerful antibiotics for a burst appendix). My dentists and dental hygienists wouldn't see me when I was neutropenic (which was all the time before my successful treatment), unless I had taken a prophylactic antibiotic, which my CLL specialist recommended. (She also told me to stop flossing when I had stage 4 neutropenia). Due to the increased focus on antibiotic stewardship, prophylactic antibiotics are less and less likely to be prescribed nowadays. My CLL specialist supports me taking courses and prescriptions for broad spectrum antibiotics for respiratory and skin infections on overseas trips (what I'm most susceptible to - our specific infection susceptibility is as heterogeneous as our CLL expression). She also provided covering letter for customs and immigration.
Respirators are basically masks with a better seal to your skin, so that the air you breath is first filtered through the mask material, rather than coming through any gaps. You'll probably have to buy them on line, but look for reputable brands of N95/FFP2 or better respirators. There's a lot of misinformation/disinformation about masking, because it unfortunately became political during the pandemic. The problem with population level studies is that they can't control for poor mask/respirator wearing, or what people do when they are not in public.
Thank you so much for this info. You are so knowledgeable and it’s such a help to me in learning how to make myself safe from infection. I actually found the N 95 online. So that’s a start for me.
I will speak to my Haemotologist as soon as I can.
Sorry, yes I am up to date with pneumonia, Flu and Covid injections. I actually had pneumonia within 6 weeks of having the injection last year. Then again a month ago.
I had chest infections within a week of number 4 Covid Pfizer jab & same with number 5 Moderna Covid jab. I had not had a chest infections for well over 15 years before. I therefore made the decision to not have any more Covid jabs.
I had a lot of infections during the 3 years that I was watch and wait. Mainly urinary tract but really nasty fungal infections on my feet. Nothing seemed to help. I was hospitalised with stomach infections although I didn't get chest infections. Once my started,I was fine. However my CNS suggested that I have prescriptions made up with antibiotics suitable fir UTIs and chest infections to have at home, ready to in case and to take with me when I go away. Might be worth asking.
get vaccinated for pneumonia. However, you need to be careful on what vaccines you take. There is weak variant that is given to children and older people then that should be followed up with the standard pneumonia dose. That’s given to most normal people. I’ll come back on this thread but the names of each vaccine. Unfortunately, chest infections tend to be one of the things you get with CLL.
I had the Pneumonia vaccine last year just before I travelled to Australia. I have no idea which vaccine it was. I ended up in hospital with Pneumonia within 5 days of being there! I had no idea there was a weak variant. Thank you for that. I will try to find out which one I had.
MovingForward4423 and Graya, our pinned post on vaccinations, healthunlocked.com/cllsuppo... which I referenced above, covers the different recommended pneumonia vaccines. The newer prevnar one works better and was originally intended for children, but initially only covered 13 of the 23 common bacterial serotypes causing pneumonia, so the older pneumovax23 was also recommend . (Viral, fungal, etc infections can also cause pneumonia.) With prevnar20 gradually becoming more in use, if that's locally available for you, there's no need to have a pneumovax vaccination as well.
Take cruise boat if feasible ..... im not kidding.
Ive been a regular on long haul flights and have often wondered how many of other peoples' bugs have i breathed in?
I never got round to asking an airline how/if the air was filtered for germs in that long sealed metal tube we sit in for 8+ hours... My ex would always end up with sinus issues including infections. she doesn't have any other health issues. I'm W&W since 2019. Enjoy Oz i was in Perth a while back and plan to go back to see more of the country.
I currently have a chest infection while visiting my daughter in Paris and trying to help her take care of the little ones while she has a huge deadline and her husband is out of town briefly and she and one of the kids have also been sick. I was super sick for days but am starting to recover and lend a hand again. It's truly disappointing to not be able to give or be our best on these special visits.
In California where I live, doctors don't do housecalls the way they used to, but here in France I was lucky to be able to see a doctor promptly without leaving the apartment.
I sympathize with that situation. My Hope in Australia is to give my daughter a break from a demanding job and two small children! I agree we’re so used to being the strong parent ready to give what we can, so disappointing.
Healthcare in Australia is amazing. I was in hospital in a small town where my daughter’s in laws live. I was in hospital and on an iV drip within 10 minutes of arrival. I just don’t want to be in that situation again which is why I’m looking for help.
Australia has reciprocal health care agreements with quite a few countries, including the UK, so residents of such countries can get similar emergency care when visiting the other country. Unfortunately Australia doesn't have such an agreement with the USA.
Get all your shots, get antibiotics, While going to an airport and on a plane MASK up. When you are with your family and there is any concerns wear your mask. Talk to your doctor about IVIG infusions. It is so very important that you protect yourself. Anna
Thank you, I will definitely mask up. I’m seeing my Consultant next week so I will see her armed with all the advice and information you lovely people had given me.
It has amazed me, I felt so alone in my CLL journey until I found this group. I’m very grateful.
Hello & welcome Graya1🙋🏽♀️ I would agree that there is a cause & effect so definitely mask up. I had 2 very bad Sinus Infection prior to reaching stage 4 & requiring treatment. I enjoyed 13yrs 8mos of W&W even as an ICU Nurse by utilizing my Personal Protective Equipment as needed.
I want to be more present & not be a hermit anymore but I must be safe also & there is usually a good way to compromise. I actually feel like you can teach by example even more effectively than talking. But I am masked whereever I go & anyone in my home or car is too. Enjoy your trip & stay safe🙏🏾
I was always taught to over do it rather than under do it & it has been a saving grace
I have had so many chest infections over the last 15 years of having CLL. Some of them I land up in hospital and once with Pneumonia. I always have a persistent productive cough that's treatable with anti biotics but comes back again. I have been diagnosed with Bronchiatasis - chronic Bronchitis.
Finally my GP stepped in and prescribed a Pulmonary (Lung) Exercise course at the local Sports Centre. It was amazingly effective and I haven't coughed or had a chest infection since. Others on the course also saw marked improvments.
There were three treatments involved:
1/ A course of heavy guided exercises 2 afternoons a week for 5 weeks.
2/ Cutting out all dairy for 3 months - it causes phlegm and coughing.
3/ Drinking 2 litres water a day - it makes phlegm less sticky.
Apparently the improvement in lung capacity from the exercises can still be measured one year on.
Prior to being diagnosed with CLL in 2022, I have a life long history of upper respiratory infections including pnemonia which required one or more rounds of antibiotics (the strong stuff) to clear up. So as soon as covid came along, I got in the habit of masking all the time when indoors around other people. I was glad to have this habit established when I was diagnosed with CLL. I have not been sick (knock on wood) since the fall of 2019. That was a doozy- a nasty chest infection and I wound up with pericarditis and a perdicardial effusion, which I assume would be worse if I got it with CLL.
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