Pneumonia

[Tgw61]

Diagnosed with cll 2013, had my first round of pneumonia October 2021, took antibiotics got over it. Shortly after that had appointment with oncologist we talked about the new pneumonia and fact I still felt wore out and WC was 213k it was time to start treatment. I wanted to keep working so we decided on calquence. After about 2 weeks of the calquence I was so fatigue I stopped working. So in November oncologist decided that I can't tolerate the calquence and puts me on imbruvica. I thought I was doing OK on the imbruvica, the fatigue was still there but I wasn't trying to work so I could tolerate it. Then in December pneumonia strikes again, 10 days of antibiotics I felt better thought it was gone, made through the holidays all was well. Then my wife gets covid, we where both vaccinated ➕ I had the booster . Few days later I start running a fever, go get tested it was negative, waited for the send off test to come back it was also negative. Had chest x-ray yesterday, pneumonia again.. Damn

[lankisterguy Volunteer]

Hi Tgw86,

-

We are sorry to hear about your continuing saga of pneumonia, have you and your doctor discussed using IVIG or SubQIG ? webmd.com/a-to-z-guides/imm...

igliving.com/life-with-ig/t....

-

We have had many previous discussions about pneumonia, and pneumonia is one of the most common causes of death for CLL patients, so it should not be treated lightly.

-

Take a look at these previous posts that I found on this page in the box labeled:

Related Posts

*Pneumonia healthunlocked.com/cllsuppo...

*Pneumonia healthunlocked.com/cllsuppo...

*Pneumonia Susceptibility healthunlocked.com/cllsuppo...

*Pneumonia vaccination healthunlocked.com/cllsuppo...

*Repeated Pneumonia and Prevention healthunlocked.com/cllsuppo...

-

Len

[Tgw61 in reply to lankisterguy]

Thanks, had my ig levels checked all in normal range

[dfksll]

Have you been vaccinated against pneumonia?

[Tgw61 in reply to dfksll]

Yes I have

[AussieNeil Administrator in reply to Tgw61]

Have you had both prevnar and pneumovax23 vaccines in the appropriate order? healthunlocked.com/cllsuppo...

These vaccines provide protection against the common bacterial causes of pneumonia, with a new prevnar20 vaccine now becoming available, slightly improving coverage. The challenge with CLL is that our response to vaccinations is less robust than that of our healthy peers, particularly if we are in, or have recently completed treatment. There are also other causes of pneumonia, e.g. viruses, for which we have to rely on our immune system.

Neil

[Vlaminck in reply to AussieNeil]

Hey, Neil, would love your thoughts. You mention the order of the vaccines. My general doc (no longer with him) gave me first the pneumonia 23 (maybe there was a miscommunication, I don't know), but BTW, I've never had a more painful reaction to any vaccine -- felt like my arm was broken and even tried to rig a splint the first night to keep it from moving. Later, diff doc, got the other one. Does the wrong order lessen the effectiveness? (Or maybe cause such reactions to 23?) Also, as these vaccines are antibacterial -- right? -- they wouldn't help against a viral pneumonia, so wondering if they know what Tgw61 has. Thanks

[AussieNeil Administrator in reply to Vlaminck]

Tgw61 would certainly benefit from having a culture done to determine what is causing his pneumonia, so he can be given the most appropriate treatment drug. The pneumonia vaccinations only provide protection against different bacterial serotypes, per the suffix number.

The most effective order is prevnar13 (or if available prevnar20) first, then pneumavax23 later. The response to the prevnar vaccine is much stronger than that seen from pnemovax, because it's a newer vaccine technology and while it doesn't cover as many bacterial serotypes as the pneumovax23, it covers the most common serotypes.

Because pnemovax has been around for decades, many of us may have already had this vaccination previously. Also, because the recommendations for pneumonia vaccinations have changed, particularly for those who are immune compromised, it's sadly not uncommon for doctors to give them in the wrong order!

Neil

[Tgw61 in reply to AussieNeil]

I have had 2 vaccines its been so long ago l can't remember the order.

[cllady01 Former Volunteer]

Have the Drs. shown you the evidence that your Pneumonia is bacterial?

With the continual wax and waning, but never leaving, you need to see a Pulmonologist to get tested for the kind of pneumonia you are harboring.

It could a fungal or viral pneumonia that cannot be eradicated with antibodies.

Here is a link to a site explaining the varieties of pneumonia, their orgins and treatment .

verywellhealth.com/types-of...

[Tgw61 in reply to cllady01]

Thanks, I am seeing a pulmonologist,10 days of 2 antibiotics after that if any sign left he wants biopsy. Also wants sample of phlegm 🤮

[cllady01 Former Volunteer in reply to Tgw61]

Good to know. Hopefully that will solve the mystery and get you the treatment needed to stop the miserable cycle. Best wishes!

[Tgw61 in reply to cllady01]

Thanks again

[Vlaminck in reply to Tgw61]

Exactly the question I was going to have, because there is viral pneumonia, bacterial pneum, and, I guess, fungal pneum. Only the bacterial one would respond to antibiotics, I believe.

[Toothdoctor]

I am so sorry to hear of your continued illness Have you had the pneumonia vaccine? I take a myriad of supplements geared to keep my immune system strong I keep my vitamin D level up around 70 that is critical 5000 units D 3 daily and 2 x a week I add more. Huge doses vitamin C quercetin stress B’s and Gaia is a great herbal company.

No added sugar. Lots of vegetables no processed foods or fast foods

I’m on Imbruvica too

[LeoPa in reply to Toothdoctor]

Huge doses of vitamin c? Are not they detrimental for CLL patients? That is what I read about on this site though I don't remember where.

[bayside64]

After 4 bouts of pneumonia in 2 years, I began IVIG treatment every 28 days. No more pneumonia.

[JLJC]

Aww I am sorry 😞 stay 💪🏼 What a rough journey, I Hope you will feel better soon.

[Hidden]

Pneumonia is a killer. I had fungal pneumonia before Christmas that put me in the hospital. I am now about to start ivg infusions every week at home. The hope is that it will prevent me from getting sick and maybe even from getting COVID. After 3 shots of COVID vaccine I have zero antibodies. Just had fourth shot of Moderna this time last month. I had a rough reaction to it for a few days but hoping that means I built an immune response. I have no idea how I caught the pneumonia but I was out more in that brief late fall season when things seemed to be getting better. The type of pneumonia I had is very easy for regular people to shed, they won’t even get sick with it. But like HIV patients, this fungal pneumonia is waiting just for us CLL patients and others with compromised immune systems. Don’t want to repeat it that’s for sure. Good luck and keep pushing your doctors to find something that works. Otherwise our quality of life is severely limited.