11 replies to this topic

[hannibellemo]

I've discovered over the past few days there is not a lot of info on management of drug induced pleural effusions. Even the Sprycel package insert talks about normal management of pleural effusions but they really don't give specifics.

At least one or two of you have mentioned taking steroids to reduce PEs or other obnoxious side effects from these damn drugs (and I say that in the best way possible) or any other reason you may have been taking it, so how did you do it? I don't think I'm going to like this but tomorrow should be the worst day. Yes? No?

My doc is back from spring break and called me this afternoon to see how I was doing. I take back every nasty thing I said earlier in the day. He was surprised to see how much the PE had grown, He said it looked like it was about a 1/4 way up the pleura - (I almost wish he hadn't told me that) and that I have another tiny one on the left side. I really wish he hadn't told me that, but I don't seem to have any symptoms from that one yet (but I do have an excellent imagination)!

He doesn't have many Sprycel patients and I was his first one, Dr. L is out of Mayo for the day so I guess we're going to try this. I'm taking low dose lasix  (20mg.) for the next three days, not for the PE, he definitely doesn't think this is edema related, not with the inflammation I have in my pleura causing all this pain, but mostly to manage any edema from the steroid. My dad took steroids for rheumatoid arthritis and I don't remember him ever having a moon face, etc. Hopefully, I inherited this trait from him.

My husband said he took a pack for severe poison ivy and he never felt better in his life. He wanted to be on steroids forever.

Anyway, thanks for your support, I really don't think I could do this without this board - you give me courage. Just so you know, this is mostly tongue in cheek - not the courage part - that's not to say I don't have any neuroses. but I'm not that neurotic - really!

Pat

Since I can't really do anything with much exertion I've downloaded Stephen King's new novel to read this weekend.

[Judy2]

Hi Pat,

I have been on prednisone for one year. I started at a very high dose, 1000mg pulse for 3 days (IV inpatient) and cut down every 2 weeks and then monthly till I was down to 2½ mg every other day last October. This was for another condition. Unfortunately I had to go back up on it, 5mg per day, because of the side effects from our TKIs. When I was on the high dose my face looked like my avatar, minus the smile. At 5mg I am puffy but not too bad, I usually have a thin face. Most peolple depuff at 10 mg but I am sensitive to the med. I call prednisone the poor mans Botox, it takes out any wrinkles you may have. I had a hard time sleeping, 4 hours per night until I got down to 5mg, then my sleep patterns were back to normal. Some people feel more hyper but I felt more peaceful. I was a little hungrier, again until I cut down to 5mg. As a matter of fact I would drive around to different Dunkin Donuts until I could procure honey dipped donuts. I am still on prednisone because of rashes and my angiodema, which is acting up from the Sprycel, and I have to say it has helped me a lot. I'm not sure what dose you will be starting on but if it is a pack I'm assuming you won't be on it for long.  All in all I think the side effects from the prednisone are very manageable and once it starts doing its job you will feel better from the PE. Good luck and please let me know how it goes.

Hugs,

Judy

[Susan61]

Hi Pat:  You certainly have every right to complain.  You do not deserve this, and I was hoping your next message would be a good one.  You just never know what these drugs will do.  I cannot even help with regard to Sprycel.  I have only ever been on Gleevec.  Maybe you can go on the Ponatinib which seems to be helping so many, but lets pray that this is just a temporary thing with the Sprycel and that you can continue taking it.

By the way what is Stephen Kings new book?  My husband reads them all.  Try to relax just like you said with no exertion.  I will keep you in my prayers to do better within the next week or so.

Susan

[Marnie]

You are a Stephen King fan!!!  I assume you've read the Dark Tower series? 

If you're looking for a really good read, try some of Robin Hobb's books.  Start with the Assassin books.

[hannibellemo]

Judy,

Thanks for the encouragement on the prednisone, I really dread starting it but it is for only 6 days and the dose is reduced every day. I can do anything for a week. Hell, this Sunday will be a month since I've had the PE.

About that, if you, or anyone else on Sprycel, develop a PE, my advice is stop the Sprycel sooner, rather than later. It's mistake my doc and I made. Had I stopped right away I'm sure this would already be a thing of the past. Lesson learned.

Pat

[hannibellemo]

Susan,

You always know the right thing to say - thank you so much. After the article on the study I posted today I wonder if I can go back on Gleevec since I haven't been taking prilosec in over 2 years!

Stephen King's new book is 11/22/63, it chronicles the adventures of a man who travels back in time to prevent the JFK assassination. It's got 5 stars on amazon.

Marne,

You know, I couldn't get into the Dark Towers series. There was a period of time when I stopped reading King and I really only started back up a few years ago. For awhile, I read everything he wrote but then I lost interest. My favorite book of his, other then The Stand which is my favorite book of all time, was Gerald's Game.  I thought that was so out of his usual genre'.

Pat

[Judy2]

Hi Pat,

Six days on prednisone should not be bad at all but please let me know how it goes. I'm hoping to avoid PE because I am already taking prednisone. Now if only I could do something about the brain fog!!!

Stephen Kings new book sounds awesome. Have you read "Under The Dome"? It's a nice thick Stephen King book and I thought one of his best.

Judy

[hannibellemo]

Judy,

l loved everything about Under the Dome except the ending! I hated the idea - spoiler alert! - that it was alien children playing a cat/mouse game with humans.

What did you think?

Pat

[hannibellemo]

Thanks, Billie! I'm sure I'll survive, it's just that until CML, I took no meds on a regular basis and I liked that just fine!

Pat

[pammartin]

Although there is quite a bit of tongue and cheek in the books, the Harry Dresden serious by Jim Butcher is quite entertaining.  One of my favorite parts is when evil monkeys are chasing Harry and they throw flaming poo at him.  I darn near laughed myself off the chair.  Another concept that is pretty cool is the thought when it storms, the winter queen and the summer queen are in battle for the territory and send in their armies to secure the area.  Lots more and I won't bore or ruin a possible read, but for me the Harry Dresden books are awesome.  I loved the serious in Science Fiction channel but it only lasted a short time.  I have read some of Robin Hobbs, enjoyed them and continue to look for more.  thanks for the tip!

[Judy2]

Hi Pat,

I wasn't thrilled about the ending either but the rest of the book was so good that I forgave Stephen for it. You mentioned that Stephen Kings new book is on time travel. Have you read the Diana Gabaldon series about a time traveling nurse or "The Time Travelers Wife" by Audrey Niffenegger? Have you ever read anything by Kate Morton? I really love her books.

Pat, I also hate taking all these meds. We take one med then have to take another to counteract the side effects of the first and then have to take another med to counteract the side effects of the second med that we had to take to counteract the side effects of the first med we had to take. ....and try doing all this with brain fog!!!

Anyway, let me know how your prednisone pack goes. Good luck with it.

Judy