31 replies to this topic

[hannibellemo]

I'm feeling sorry for myself so, of course, who do I turn to for sympathy? All of you lucky people! So far in the past 5 days I have had an echocardiogram, ProBNP blood test, and today I had a chest CT. Anything cardio was perfectly normal; the CT was to rule out pulmonary embolism, because evidently my pain and shortness of breath levels were out of whack with what the x-ray showed as a very small pleural effusion. My uneducated guess (I left my MD license in my other purse) is I'm in more pain because I'm so short waisted that there is no place for the fluid to go except to press on whatever boney process is in the way! (Thank you, Mom) Otherwise, I have a pretty high pain tolerance, I went through a spleen infarc before dx and didn't call the doc or go to the emergency room because I had just seen my PCP that afternoon so what could possibly go wrong? How's that for denial? BTW, my CT showed a moderate pleural effusion, but I have no way to correlate that to the x-ray but since my pain increased, I assume the amount of fluid did, too.

So, anyway, I met with one of the medical oncologists, my normal doc is on vacation, and he agreed that I should stop the Sprycel until this resolves and try a lower dose at that time. If I don't see any improvement in 5-10 days I'm going to press for some prednisone to help it along.

He gave me Tramadol for the pain because I hate narcotic pain killers. Can you say "terminal constipation"? But really, what's the diff between narcotic-like and narcotic? Anyone else taking/taken this? What can I expect?

So the bad thing is I'm off Sprycel. On the other hand, the good thing is, I'm off Sprycel! I intend to savor every pre-CML normal feeling day I have!

Thanks for listening to my rambling; I'm very aware that there are many of us out there who are going through much more than I and I keep you in my thoughts and heart every day!

Pat

[simone4]

Hi Pat. my mom took Tramadol for years for her degenerative disk disease.  It is

just a potent anti-inflammatory drug and it gave her no problems.  She always

took it with each meal. I hope it helps you.

Ah, to feel normal again.  I have forgotten who I was. (I have

almost forgotten English, as well).  It would be difficult to

learn a second language now with CML.

Take care.

Simone

[hannibellemo]

Thanks, Simone; that's encouraging! This may be helpful for some who have bone pain. The doc who prescribed it broke his femur in 6 places several years ago in a skiing accident, he takes it on the days "his leg is talking to him". His words.

I took my first one 45 minutes ago (50 mg) and it really does seem to have taken the edge off the pain when I take a deep breath.

Pat

[Trey]

In addition to the traditional pleural effusion (fluid around the outsides of the lungs), Sprycel can occasionally cause fluid to build up in the alveoli air sacs inside the lungs.  The Xray won't see the alveoli fluid since it is so diffused.

[BethG]

Oh Pat,

I was surfing the LLS Boards today and I'm very, very sorry to hear your news! I hope your PE clears up quickly and doesn't make a reappearance.

Thinking of you,

BethG

[GerryL]

Hi Pat,

Enjoy your drug break Hopefully the pleural effusion resolves itself quickly.

[Marnie]

Hey, Pat.  .sorry to hear about your woes.  That stinks!  I hadn't noticed brain fog until this week. . sheesh!!  Try teaching middle school advanced math with a brain that doesn't function.  Duh!  I guess maybe I DO have more side effects than I had realized.  Or maybe I'm just getting dumber.  I wonder if a week off of Sprycel can restore brain function?  Good luck and enjoy your drug-free time.  Control the stress that might happen knowing that you are not taking your pills.  Geez. . .you just can't win in this game, can you!?!?

All the best,

Marnie

[hannibellemo]

Trey,

I went back to the Aug. 25, 2011 post by idagata where you attached the articles on aveolar involvement. I'm not saying it isn't a possibility but I had just been at Mayo on Feb. 23 and was already symptomatic, although I didn't realize what is was at the time. Dr. L is very thorough in his assessment. I never see a nurse, he does everything himself, very hands on, a skill that is sadly not being taught in this technologically enhanced medical world. My lungs have always been crystal clear, no crackles, rales, wheezes, etc. He is the only physician to tell me I have a murmur however, which was later born out by the echocardiogram. He spends at least 10 minutes listening to my lungs and generally comes up with new ways to listen. This time I put my hands on top of my head and he listened to my lungs from the side.

Still, very interesting and I will take the article to Dr. S. when I see him the first week of April. He is not as thorough as Dr. L but does listen to my lungs at every appt. and always says they sound completely dry.

Thanks for the information.

Pat

[hannibellemo]

Beth,

It's so good to see your post! Thanks for the commiseration. I assume the reason you are an infrequent poster is because you are doing so well and I'm very happy for you!

I made it to London and met PhilB and his wonderful family and they prepared some marvelous food for my friend and me. They showed us Stonehenge, Salisbury Cathedral and the town proper, and my personal favorite, Old Sarum! His wife is so knowledgeable about the area, such a historian!

Take care,

Pat

[hannibellemo]

Gerry and Marnie,

I definitely intend to enjoy my time off Sprycel, hopefully the PE (which I've found is really used for pulmonary embolism, but I will use it for pleural effusion) will resolve quickly and on its own.

Fortunately, I had the experience of being off Gleevec for 7 weeks while waiting for my liver enzymes to return to normal with no rise in FISH or CBC so I'm hoping that will hold true this time, too.

I only hope I don't have to repeat the first night on Sprycel all over again when I resume. That was nasty!

Pat

[scuba]

Hi Pat,

What Sprycel dose were you on before stopping?

[Judy2]

Hi Pat,

Sorry for your PE but I hope you are able to enjoy your drug holiday. Post and tell as all about your drug free days so we can have a vicarious experience.

Hugs,

Judy

[hannibellemo]

Hi, Mike,

I'd been on 100 mg since starting Sprycel in 10/09. Edema has never been an issue for me, so I do wonder if this isn't more of an autoimmune response. I'm not sure what this means in terms of me being successful at a lower dose - at least in terms of avoiding future PEs.

Pat

[scuba]

Hi Pat,

The goal is to get back on Sprycel as soon as practical. Once the PE resolves, I do suggest a lower dose at first. Perhaps 50mg. would enable you to stay on Sprycel every day. The good news is that low dose Sprycel can work very effectively. Dr. Cortes has dozens of patients on low dose. Although my MMR after seven months at 20mg. was on the edge of his statistics (i.e. I had a faster response than expected), his interns told me that he is preparing papers on the efficacy of low dose Sprycel as an alternative to drug interruption, stimulation and switching. Perhaps he'll present his findings at a future ASH conference.

In the mean time, you should consult seriously with your Oncologist about resuming Sprycel at a lower dose and then track PCR response over 3 months. If your PCR numbers continue downward - you have a new plan with less side affects. If PCR increases, then you might consider switching drugs or going back to the normal dose and watch for PE.

I believe you will do very well at lower dose. Just keep in mind I am at 20mg. .... 1/5th the normal dose and my PCR has plummeted. Feel free to mention that to your doctor.

All the best,

Michael

[pammartin]

Hi Pat,

I took tramadol for a few years, the nice thing about it is I had not one side effect and it did help the discomfort I was experiencing.  I spent two weeks off Sprycel last fall and although I drove myself crazy worrying about the loss of response (I had none, more worry wrinkles for nothing) I felt great.  Enjoy your time and try not to worry so much.  Let us know how you are doing.  Take care.

Pam

[BethG]

Hi Pat,

Yes, I've been doing great until recently. I might be having a bout of pancreatitis...we'll see. It is very uncomfortable, but I'm trucking along.

BethG

[hannibellemo]

Thanks, Michael,

I had meant to ask you about your ideas on the subject so I'm glad you got back to me so quickly. Dr. S and I had already discussed lower doseage if necessary, and I think it will be, at least for awhile. The only question is how low?

I had intended to push for 50 mg. to start. Trust me, I don't like the idea of being off S, but I honestly think I waited too  long as it is. I don't think I would have all this pain if I'd insisted sooner.

I'm just so disappointed since after the first few months I was tolerating Sprycel so well! I'm not a jack rabbit responder and I may never get to CMR so I hope that a lower dose will still allow me retain MMR.

Pat

[hannibellemo]

Billie,

As usual you cheered me up and made me laugh! I can totally relate to what you were saying about inseams. I'm 5'11" with a 34" inseam, my husband is 6'4" and the same. Our oldest son is 6'7" with a 35" inseam. I used to laugh and say I had to start wearing maternity clothes 3 days after I found out I was pregnant because there was no place for the baby to go except out in front!

Pat

[hannibellemo]

Beth,

I'm sorry to hear that, I have heard that pancreatitis can be very unpleasant. I hope there are things that can be done to help you manage it. I suppose anything worth eating is out of the question. (It always comes back to food for me.)

I know at one time they were saying that ponatinib may have the least amount of side effects of all the TKIs but according to things Jerry Mayfield has been posting on his site the thinking may have changed on that.

Take care and let me know how you are doing.

Pat