Cll/fungal infection of the lung

[Ladydi49]

Hi everyone...

I have been in the hospital 10 out of the past 15 days. First admission was for neutropenic fever which was a 5 day admission. I went home for a few days then started running temps of 101.5 and 101.7 which generated the second admission. Tests revealed a fungal infection in my lung so I was started on i.v. Ambesone (sp) and oral Cresemba the latter of which is causing considerable nausea which prevents me from eating. I do have an anti - nausea med which doesn't help much and if I can't eat I'll lose wait while I'm trying to fight the infection and cll. My vital signs are normal except for a pounding heartbeat, I have marked swelling from my groin to to toes and my skin feels like it's on fire. Thoughts?

[Jm954 Administrator]

Oh crikey Ladydi, you’re having a tough time.

Cllcanada has experience of fungal lung infections (sadly) and might have some advice.

Wishing you a speedy recovery

[Cllcanada Top Poster CURE Hero]

So sorry to hear this Ladydi, do you know what fungal type you have? I can't offer much advise because my med for aspergillosis were different than yours, although they came with a raft of side effects, particularly the voriconazole. I got to the point I couldn't take it anymore and they changed me to posaconizole, which I found better.

Tell you doctors you are have nausea issues, because, often these anti nausea need to be adjusted and perhaps used in combinations...

I wish I could help you more... and hope you can get over these issues soon... tell the doctors what's happening...

~chris

[Ladydi49 in reply to Cllcanada]

Hi Chris...thanks for your reply. I looked up side effects of Posaconazol and there certainly alot of potential side effects including nausea which along with constipation and a pounding heart are bothering me on Cresemba. I had nausea and hallucinations among other things on voriconazole. Are you having nausea on posaconazol?

[Cllcanada Top Poster CURE Hero in reply to Ladydi49]

No nausea, but a reduced appetite for certain... reduced siliva, makes it hard to swallow.

[Ladydi49 in reply to Cllcanada]

Was just reading and viewing the videos you posted. Interestingly Dr Pinilla is my doctor! If you wouldn't mind, maybe you can private message me re your cll markers? I hope to find out this week what kind of fungal infection I have and I'll private message you....best regards,

Dianne

[Hidden]

Hello Di,

Good to see you again! I am so sorry to hear about old Miserable paying you a visit. Always an unwelcome guest. If I could take your Cresemba for you, I would happily do it. Renee always tell me she is so envious I have a titanium stomach. If they are not giving you Zofram for nausea ask for it....Renee swears by the stuff.

Please let us know when you feel better.

Scott

[Ladydi49 in reply to Hidden]

Thanks Scottxxoo.......I was given 9 zofran tabs with 5 refills. I have to be on an oral antifungal for 3 months and weekly iv antifungal for 6 months and of of course 5 more rounds of BR the second of which is due 8/16 & 8/17

[winterwild]

Hi Ladydi,

I had a fungal infection in my lungs a few years back. The hospital tried 4 types of intravenous antibiotics and none worked. My girlfriend visited me to tell me that I had PJP, Pneumocystis Jiroveci Pneumonia previously known as CPJ as her mother had it. The infectious diseases Doctor was with me at the time and he said to her that I think you are right. I could not stop shaking with high fevers but had 1 hour between pain medication where I would stop and was terrified I wouldnt be able to stay still for a CT Scan. I had 1 tablet of Bactrim and said an hour later to my husband that this was the right drug. I was able to have my scan and was diagnosed with PJP. I took Bactrim maybe 3 tablets a day for 3 weeks and then a maintenance dose for a long time after. Immune supressed people can get this and also people who have had a lot of prednisilone. I have never been so thankful in my life for a tablet. Hope it works for you. It can show up on a CT scan and an xray and in sputim but as there is not much mucus this can be hard. I had it for a few months before I became really sick and found it very hard to eat. Eventually I could feel something spreading in my chest and then I had really bad fevers and was admitted to hospital. Good luck.

[Ladydi49 in reply to winterwild]

Did the treatment clear up the infection...was it the Bactrim that did the trick and, at the time did the say it was fungal? Were you being treated for cll and if so, what was your treatment for the cll?

[winterwild in reply to Ladydi49]

Yes it was Bactrim and it was fungal. I don’t think I was being treated for my CLL at the time but was having prednisilone, but could have had some Fludarabine, Cyclaphosomide and Rituxamib before hand. I have been diagnosed for 18 years and have had a number of treatments. It wasn’t until the night before I was admitted to hospital with fever that I actually thought this could be my lungs. The fungus was multiplying and taking over my lungs. I knew something was wrong for a while as I found it really hard to eat. As I said after being so ill in hospital the very first tablet of Bactrim worked immediately when none of the intravenous ones did. I was on Bactrim 3 tablets for 21 days and then a maintenance dose for quite a while after. I have also had aspergillus which is another fungus but that was not as bad as PJP. Hope this helps.

[CLL23]

Sorry to hear this -- I assume you have a good oncologist to advise on this.

You really need to eat somehow or other. I have a lot of problems with nausea. Sometimes I can just get liquid supplements down -- it's better than nothing.

I also had a lymph node enlargement in the groin area -- awful.

[MsLockYourPosts Passed Volunteer]

Di - I hope your doctors can come up with a definitive diagnosis for your fungal infection. Knowing what you are dealing with, and which drugs it is most likely to respond to makes a big difference. Do your doctors have any ideas about the edema in your legs, or the pain? How are your kidney values? Edema can be caused by kidney issues, maybe a reaction to one of the meds, or cardiac issues. If the swelling is pronounced it can be very uncomfortable. Also venous insufficiency (leaky valves in the legs) or clots. There are different types of ultrasounds for the venous insufficiency and the possibility of clots. Is it the burning skin on your legs related to the edema, or full body - maybe neuropathy from the Bendamustine? I wish I had answers, but the above are things I've seen people write about related to your symptoms. I would add any your doctor hasn't addressed to your list of questions.

[skipro]

god bless with all that

Swollen leg could be a clot. Did you have an US?

There are a lot of Nausea meds. Which have you tried

Phenergan

Comparing

Zofran

Decadron

Aloxi works best for me and each dose lasts 72 hours

Skipro