Pentamidine?

[Tabbytabby]

I am on V + O treatment. My last Obi infusion is July 3. A month ago I developed a rash on my chest, neck, and face. My oncologist had me stop Bactrim to confirm it was the culprit. The rash cleared within a week. Now he has me scheduled for an oral inhalation of pentamidine. I am concerned about this treatment. Has anyone had this treatment? Is there a different antibiotic to replace bactrim that can be taken by pill?

[Thundercat2]

Hi Tabby,

I had to have a few of the pentamadine oral inhalations because of a rash during treatment with Obin and Ibrutinib and they also thought it was the Bactrim. I, like you, wasn't keen on the idea and when they told me I needed it, it seemed to come out of left field. But basically you breathe into a tube for a short session, (sort of like an inhaler). I don't recall how long but like 10 minutes or something? Nothing terrible about it, it sounds way worse than it is. I figured if it helped me stay healthy through treatment though it was worth it. But I also remember feeling like really? Another thing?

[Tabbytabby in reply to Thundercat2]

I am like you … Another thing? It seems like I am taking pills all day long! Thank you for your reply.

[Tabbytabby in reply to Thundercat2]

I started coughing a few minutes into the treatment and could feel my chest tightening and getting a deep breath was difficult and scary. The treatment was aborted. Now I am worried about what medication is available to replace the bactrim and pentamidine. I really hate CLL!!

[Thundercat2 in reply to Tabbytabby]

Sorry to hear that Tabby. We are all so unique in our CLL presentations. Hopefully your docs can find a suitable substitute.

There were times when I thought I can't deal with one more thing but eventually those situations passed. So hang in there!

[SofiaDeo]

If you are taking the Bactrim as PJP prevention, you can ask if oral dapsone can be subsituted. The ULTRA-V trial, possibly others, used it because of an interaction with one of the 2 drugs in Bactrim. There may be reasons why dapsone is contraindicated, or the nebulized pentamidine is a better choice, but you can ask.

[Tabbytabby in reply to SofiaDeo]

Thank you! I will ask.

[Greenbunnies in reply to Tabbytabby]

I'm on Dapsone (as co-trimoxazole didn't agree with me) and that has been absolutely fine. Also have my final Obinutuzumab infusion on the same day as you!

[CycleWonder]

My son takes his asthma medication via a nebulizer when he needs to. The reason is the medication is delivered directly to his lungs rather than via digestion/blood method.

It’s just a different way to take a medication. No needles and pretty easy.

[RobertCLL]

I received pentamidine back in 2002 whist on Fludarabine and a skin reaction to septrim. Then again in 2008 whilst on RFC. My notes say:

Given inhalation by mask of Ventolin, which lasted for about 10mins.  The Ventolin is to open the air pours of the lungs.  Then followed with the Pentamadin, which lasted for about 25 mins.  Procedure OK, unpleasant taste and difficult to inhale for the 25mins without a break.

In total I have had some 20 rounds of Pentamadine because of the skin reaction and T Cells being low following the Fludarabine.

A mint on the tongue I found helped with the bad taste of Pentamadine.

[Tabbytabby in reply to RobertCLL]

Thank you!

[Tabbytabby in reply to RobertCLL]

I had a great deal of coughing! Had to stop treatment.

[mnmnewtons]

Several years ago when I was on my second CLL drug Idelalisib (Zydelig) my second opinion doc at The James Cancer at OSU (not my genius regular CLL "expert" doc) recommended Pentamadine inhalation therapy to prevent pneumonia. It was unpleasant breathing in the aerosol with a mask in a tent alone for what seemed like forever (actually about 15 minutes) but it worked until I skipped a session and got crazy with a seemingly innocent game of left/right/center with about 20 other people. Yep, pneumonia and hospitalized for over a week. Big setback for me. Two stupid mistakes.

[Tabbytabby in reply to mnmnewtons]

Thank you for your reply. It sounds like you had a rough go for it. I hope this treatment works for me.

[Fran57]

Hello.

When my husband had FCR treatment in 2015, he had incredible rashes, which drove him(and me!🙄) mad.

It was thought to be caused by Co-trimoxazole , which was given as a preventative treatment for pneumonia, whilst on FCR.

The hospital decided to change him to inhaled pentamidine. I think it was a monthly dose. We had to go to the hospital and he had to sit by himself, in a sealed room, because it was so potent, and the room had to be left for quite some time before anyone could use it.

I remember him saying it was an odd taste (he had to inhale through a mask), but he just sat for about 10 minutes or so and it was fine.

It was very preferable to the miserable, constant itching!

Good luck. I hope it goes well for you.

Fran 😉

[Tabbytabby in reply to Fran57]

Thank you for your reply. I have read it has a terrible taste. I am not looking forward to the treatment, but I am hopeful it will work.