30 replies to this topic

[CallMeLucky]

Hi everyone.

40+ male with cml for 4yrs, currently CMR taking Sprycel 100mg. Got a viral cold about 12 days ago and was having trouble shaking it. I caught it from my wife after coming home from vacation. Started to run fever of 100.7 on Sunday. Went to ER on Monday and they said I had pneumonia. They gave me IV antibiotics and sent me hope with 10 days of oral antibiotic levoquin I think. I took another pill before bed and woke up at 5am with 101.5. Took some Advil but doesn't seem to help. Dr originally said I should be admitted because of cml but on-call oncologist said I was in very good shape and they should send me home. My counts were normal with WBC of 10.8. He said he would have expected it to be even higher but Sprycel may be preventing my immune system from fully functioning at optimal levels. I have no trouble breathing a medium cough, headache, and fever. I'm concerned my fever went up more.

I'm curious if anyone has battled pneumonia and could share experience. How long did fever last after starting antibiotic ?

They did a blood culture at hospital and don't know results yet, it's possible this is viral.

Thanks for any input.

[Marnie]

Hi, Lucky. . .

 

Sorry to hear this.  Please be sure that your doc checks for pleural effusion.  My first round of PE was diagnosed as pneumonia.  My PCP put me on antibiotics which did nothing.  By the time I finally convinced my doc that it was a PE, my lungs had filled up so much that I could hardly breathe.  They drained 1.6 liters of fluid.

 

Good luck,

Marnie

[pammartin]

I was diagnosed with a severe chest infection and potential pneumonia before discovering it was PH. I had the cough and tightness but only a small amount of plueral effusion. From listening to oncologist and cardiologist the pneumonia would have been starting to clear up a few days after beginning the antibiotic. That didn't happen, and I kept pushing for answers. I also had an inhaler and inhaled steroids. I hope you begin to see improvement soon, as Marnie stated, be proactive even the best doctors miss important details.
Feel better soon
Pam

[CallMeLucky]

Thank you Marnie and Pam for responding.

 

Did either of you have fever with your PE or PH?

 

The ER doctor seemed confident it was not PE, but I will likely get that checked again in a few days by Onc.  He said the fluid was in the right upper lobe in the X-ray, which I was standing for.  He showed me the x-ray and the lower area of the lungs, which is where he said you would see PE when standing and it  was very clear.  He also said the fever is indication of infection and since I had a cold for two weeks, he was confident it was pneumonia.  I think I have to watch it doesn't turn into PE.  Right now more concerned about clearing up the infection.  In theory my immune system should be ok, but let's face it we know our immune systems are not as good as they should be.

 

I have a call into Oncologist, waiting for him to call me back.  I suspect he is going to want me to come in.

 

[pammartin]

Lucky,
I had a low grade fever the first few days, thinking now it was sinus infection. After two days on antibiotic it disappeared. I admit to paranoia about my immune also, I know everyone says it is stronger than I think and many have lower counts than I, but the anxiety about suppressed immune continues. Let us know how you are. Positive thoughts and prayers.
Pam

[Marnie]

Does not sound like PE from your description of the x-ray.  I think that if it's pneumonia, you should have a pretty quick response once you start antibiotics.

 

I just got home from the hospital after undergoing a whole slew of lung tests.  Still off Sprycel, and onc doesn't know what to do with me.  From what the tech said, my lungs seem pretty much o.k.  So I don't know if we'll have any answers.  Now I've developed a really annoying dry cough. 

 

Getting tired of this crap.  I guess in addition to the cml club, we can now form a "lungers" club.  Pam, you get to be president.  Lucky, you can be vice president. 

 

m

[Pin]

I don't have any experience with pneumonia, but I just wanted to say I'm sorry to hear this Lucky - hopefully the antibiotics will fix you up real soon.

[CallMeLucky]

So oncologist had a few things to say and was not happy about the way things have gone so far.  Said on-call should not have told me to wait on Sunday, also said the 500mg they prescribed is not enough and it should have been 750 so he bumped me up.  Said if fever does not clear by morning he will admit me to hospital.

Right now temp is over 101, so unless something amazing happens in the next 12 hours I think I will be heading to the hospital.

[pammartin]

Positive thoughts and prayers. Take care

[SunNsand]

I hope you feel better soon.
I wonder if our TKI's work against our bodies trying to fight infection. I had never thought of that before until after reading your comment.

[CallMeLucky]

Fever jumped up yesterday over 102 so they admitted me into hospital. They are blasting me with three different heavy antibiotics IV. They said best case scenario I may get out Ina week! This sucks really bad. They said they are treating me the same as any other patient and the cml is not much of a factor in this, I'm not so sure about that but whatever I guess. One problem is they put me on oncology floor, this makes things very tricky with work. Right now they think I am home with pneumonia, if I tell them I am in hospital there is a good chance they ask which one. Since we all live in same are they will expect that I am in local hospital, which I am not. I can come up with excuse why but if so one were to want to visit or send me flowers my little secret is going to be out. I know I don't have to tell them details but this is about coworkers I am friends with, I find myself in a sucky situation, as it is my kids can't visit. Sometimes I wish I could have just been open about everything to everyone. Now I have to try dancing around this as long as I can and hope I can get out of here soon. Problem is everyone keeps telling me I'll feel better in 24 hours every day goes by and I'm not feeling any better.

[Marnie]

Easier said than done, but try not to stress about it.  That will only make things worse.  Hopefully the antibiotics will kick in soon and you'll be out of there.  Good luck!

 

Marnie

[pammartin]

Hope the antibiotics kick in soon. Try not to stress too much about location, perhaps you could use the 'only spot available' if needed. Pneumonia is one of those diagnosis that you might pull off the 'no visitors or flowers' concept. Visitors could carry or transfer germs and flowers make you sneeze with allergians. Focus on getting better, best of luck for an extra quick recovery. Take care

[Trey]

If it is viral instead of bacterial, no amount of antibiotics will help.  But it is hard to distinguish between the two types, so they often give antibiotics anyway. 

 

http://www.lung.org/...gnosis-and.html

[CallMeLucky]

They identified the bug, it's a bacteria they have given me some heavy duty antibiotics, cefapime and zancomycin but now say I need azythromycin. I still have low grade fever and I'm coughing like crazy. They start the azythromycin tomorrow. I wish they would start tonight but they said I have too much in my system, they even have me skipping dasatinib for a few days due to qt interval with the antibiotics.

Supposedly this bug should not be that hard to treat but it begs the question why has nothing worked well so far?
They said my WBC went down to 7.5 which was good because it meant the infection was clearing. But last night they woke me from my sleep and told me I had mild sepsis and my heart rate was too high and I needed IV fluids. It's a bit nuts I just want something to work. They said this really has nothing to do with cml or Sprycel and that I just got a nasty case of pneumonia.

Hope this resolves soon. Thanks for the well wishes.

[Marnie]

I was on azithromyacin for something once, and it worked well.  Hope the same is true for you.  Good luck and hang in there!

 

Marnie

[Pin]

Wow, that is a full on situation, Lucky - I'm glad your WBCs and fever has dropped a bit, hopefully it will continue to go down when the anitbiotics really kick in. Pneumonia is not to be messed with, so it's good they are taking such good care of you - CML or not. Get well really soon xx.

[simone4]

Lucky, so sad you are going through this.  Glad your temp came down and they have identified

the bug and treating it.  My good friend is an internist on the Leukemia floor at one of the

hospitals here.  He always says that it might take a longer time for us to rid the body of pneumonia

than an average healthy pt.  However, if you can stay off that Sprycel for a week that may

allow your body to heal.  Even my onc admitted that on Gleevec it takes a longer time

to heal.  I have observed this from having a tooth pulled and from a sinus infection this

summer.

 

Patience... that is hard to do, but sounds like you have some good care

where you are in an oncology ward.

 

Thinking about you and your family. 

 

Simone

[August1]

Hi Lucky,

Glad they got things going in the right direction and I hope everything is going well for you. 

 

I am also on 100 mg Sprycel and I definitely feel that it impacts immune system function. Like many, I've dealt with changes in my WBC and neutrophils, etc. Although it's never been at a "dangerous" level I have been dealing with numerous recurring infections (skin, nose, throat) and have been on antibiotics more in the last three months than ever before in my life. I am on antibiotics now as I write this.   

 

I am hoping my PCR values allow me to request potentially moving to 70 mg rather than 100 mg to allow my immune system to amp back up a little. Of course, treating the CML is the first consideration, but maybe when you get out that could be an option for you?

 

Take care and get better.

[LivingWellWithCML]

Words of wisdom from everyone here. There is no doubt that we heal slower on TKIs - it takes me much longer to fight off illness, and my mounting sports injuries are also very slow to heal. Stay patient and the healing will come. Got you in my thoughts!