14 replies to this topic

[hannibellemo]

I am definitely down in the dumps today. Got to get out my blues harp and play - if only I had enough wind!

I have a moderate PE, short of breath, etc. but...I sleep on a wedge and when I sit up in the morning I can feel the fluid roll down hill, not a pleasant feeling I must say! When I bend over from a standing position or roll over in bed I can feel it shift. If I irritate my diaphragm just right I get sharp shooting pains right up to my shoulder. This sucks! Yesterday I really felt I had turned a corner and today I feel a backslide has occurred.

My recommendation, if you ever have proof that you have even a tiny PE like I did originally. Stop your Sprycel right away! I don't think I would be where I am now if I had been taken off immediately! This would be resolved and I would be on to new strategies.

10th day off, the only positive, it does not seem to have come back to the level it was last Sunday before the thoracenteses.

Damn, damn, damn!

Pat

[Susan61]

Hi Pat:   Sorry your feeling so lousy.  I knew  a woman who used to post years ago, and she was on Sprycel. She decided not to be on the boards anymore, but she would call me.  She sounded like she was drowning all the time in her own fluids, and her doctor kept her on the Sprycel.  She had so many other problems along with it.  I do not know what ever happened to her.  I have not heard from her anymore.  I know she was frustrated because she could not get her numbers down, even on the Sprycel.  I hope she has survived it all, and is doing well.

      I hope you can get onto something else soon, and start feeling better. We know what works for one person, does not necessarily work for another.  I do wish you the best, and agree how could you not have any symptoms of a PE

[pamsouth]

Hi, Hannibellemo,

I try to read some of the post every day, but I am sorry I don't remember the details of your journals. 

When were you diagnosed *CML" and what TKI did you start out with and when did you start on Sprycel?

  Just wanted to get a little detail.

I was diagnosed with CML in 2005 at the age of 57 and am still on Gleevec at the age of 64.

Thanks for sharing.  I find it interesting following the side effects, especially on the newer drugs, as there is not much history or data out, because the trials are shorter now.  I live in the Indianapolis In area.  Last nite I went to a meeting at the Conrad with the Experts of Blood Cancers.   However I get the real stories of living with CML and the TKI from the patients.  One doc did mention they are extending some drug patents to 15 years or so for the research money.  He also mentioned the U.S. is much behind other countries on research and financial taking care of their patients.  He used Medicare donut hole as an example and said it was to bad we were having these problems in the U.S.

Thanks PamSouth

[hannibellemo]

Hi, Pam,

If you click on my name my benchmarks are listed, sorry don't feel like retyping them.  Our TKI patents are extended because of their "orphan drug" status. It gives them more time to recoup the r&d expenses; of which, I believe there are many. Gleevec will be coming off patent in a couple of years that but doesn't necessarily mean there will be a generic in place when that happens.

I have been hearing rumors that the generic is not necessarily falling into place as easily as they had hoped. That there are problems with the biological equivalents. Trey, can you shed some light on what I hope are just unsubstantiated rumors? This information came from one of the pharmacists in our pharmaceutical health care provider. I couldn't agree more that our country lags behind in providing affordable care for our citizens. I don't know about the rest.

Even with the pleural effusion I believe that Sprycel is a wonderful drug that has a lot to offer us. If your drugs are working for you and your side effects are tolerable by all means stick with them, but please don't advocate not switching for any reason what so ever because we just don't know enough about the 2nd line drugs. We are all test subjects, they can only learn so much through the trials. The continuing knowledge comes as more and more people are using these drugs and reporting results. I do not report my results and side effects but I know my physicians do. I would encourage everyone to encourage your docs to report, too.

Take care,

Pat

[Tedsey]

Oh Pat,

I am so sad to hear this.  I was hoping all would get good and right very fast.  I understand your frustration.  Sprycel has worked so well for you.  And now this.  Uggggh!  I wish they could find out exactly why the drug causes this and reconfigure.  I started wheezing a short while after taking S.  My onc heard it, but feels it is OK for now.  My lungs sound clear, but so did yours.  The only time I have trouble breathing is when I am lying down.  The more active I am, the better.  I worry sometimes because I have a constant cough.  But it could be anything.  Thanks for reporting all this.  I truly hope things work out for the very best for you. 

BTW, I am very short-waisted too.  I hate it when my ribs hit my hips  sometimes when I bend (ouch!).  Oh well, so much for the alpha-female hourglass figure...  Well, we have longer legs as a bi-product(but I am only 5'5").

Thinking of you and hoping this is just an inconvenient hiccup on your road to recovery,

Teds

[hannibellemo]

Hi, Susan,

I don't think I am as bad as your friend! I just don't have any patience, this waiting game has never been my forte'. Where are my x-ray glasses that I got by saving cereal box tops when I need them. If I could just see what was happening inside my body (how is that for control issues? ) I wouldn't worry so much. I ended up in the emergency room on Wed. morning because I had such sharp shooting pains behind my right breast (and that was the area on my back that they placed the tube). I was quite convinced I had developed a small pneumothorax, but I hadn't; it was just my irritated diaphragm. Well, I got news for my diaphragm - I'm plenty irritated with it, too!

I see more bensodiazipines in my future, it does help stop the obsession with my breathing!

On the plus side I had wonderful Stone crab claws for dinner last night! It all comes back to food for me.

Take care, Susan, and enjoy the weekend!

Pat

[pamsouth]

Hi Hanniabellemo,

That is true, where would we be without R & D and hopefully a Cure!  Yep there would be no TKI. 

However to be perfectly honest it really bother me to feel like a guinea pig of sorts, on any drugs. If possible I would prefer a drug that has been out at least 10 years. I do think that is what is required for most drugs.  I do understand it is imperative that we push these drugs thru as a person may not have a response or because of side effects on 1 drug.  However when I first went to my new onc he said most patients are the opposite of me, they just want the newest and latest, or trial drugs, thinking it is better.  In fact that is what my previous onc said last year, there are better drugs, I think she used that term rather loosely, as just for the sake of "oh you been on that drug 6 years now, there are better drugs"  That didn't sit with me well.  It is for that reason only that I note I would not want to change drugs, if I had a choice.  The new onc did agree that he would not advocate changing drugs just to be switching.  I personally sometimes get that impression, that if we try first line and don't like it because of the side effects or we don't give it a chance for the response we want NOW, because we are scared out of our wits!  We think another drug will give us less side effects, better quality of life, and faster response, when that is not always true. The CML expert at the dinner last nite eluded to the fact that many of the doc/onc are really not blood cancers experts, thus are switching drugs around, or the patients are not always taking their meds, because they forget or because of financial reasons, or they just want something they think will be better.  Newer, doesn't always mean better, but by all means if it is necessary to change then we should, regardless of the length of data.  Taking Cancer drugs and the need is not like some of the lesser disease or where you have more choices.

My son was put on a drug and later it was learned that it causes Diabetes and he now insulin dependant (because of this drug), he was awarded a small settlement, but that was a small price to pay for diabetes.  But when you think about it, such is life, regardless of what drug it may be, there are no guarantees.

I appreciate your thoughts and wishing you continued healing on your journey. 

Always praying for the CURE!!

Best Wishes, Pam South

PamSouth

[Judy2]

Hi Pat,

I am so sorry you are having such a hard time. I can't remember, when you go back on Sprycel what dose will you be going on, or are you going to switch meds? As for being able to see inside your body, I have often wished we were reversible. Just think, we wouldn't need MRIs. CAT Scans or X-Rays and surgery would be so much simpler!!!

Hope you feel better soon.

Hugs,

Judy

[Happycat]

Pat,

Never had a PE, but I did have pleurisy, and if you feel like that, I can sympathize. One thing I learned, it takes a long time to get back to normal. I felt better , so tried to vacuum, and irritated everything so much it set me back another 2 wks. So, assuming a PE is like pleurisy, don't overdo it once you feel better. Take baby steps.

I had an infection, and had to take heavy duty antibiotics. It took forever, because it's hard to get drugs into the pleural cavity. Apparently not a lot of blood flow there, or so my MIL the nurse tells me. Not sure if they gave you drugs, but if so, it takes awhile to have an effect.

Hope you are feeling better.

Traci

[GerryL]

Hi Pat,

Hope things improve for you soon. My doc doesn't like Sprycle all that much due to the PE issues. I'm glad the Gleevec is working for me as I think it gives me a bit of fluid on the chest as part of the fluid retention. Apart from the puffy ankles and knee joints, I feel the fluid build up around my torso area and find I feel my chest feels heavy and I get puffed when walking up stairs. Hate to think what it would be like on Sprycel. I don't like to take a fluid tablet everyday as I'm not sure what long terms effects that will have.

Sorry to hijack now but - on an another note I had my Colcoscopy and the Gyn found a little spot, which she let me look at using a mirror. She removed it for testing and told me she thought it was pre cancerous, which is better than it being cancerous.I didn't hear back from her so rang my GP and spoke to the receptionist. She told me one of the GPs had reviewed the report and closed it stating "no action required". Which is great, but I am still curious - does that mean it was pre cancerous or does that mean that my TKI was doing a similar thing in my cervix (as in playing around with my skin cells) that it does elsewhere on my skin.

Back on topic - get well soon.

[Marnie]

Pat

Sorry you feel awful.  It sounds horrific.  Makes me nervous about sprycel.  Wish my numbers would drop so I could consider lower dose. just learned that my blood is just down the road in Raleigh.  Wonder if they would give me the results if I called.  Guess I'll just have to wait until we get back to Denver.  Hope your pe clears up soon and you can get back to a normal level of activity

[CMLSurvivor]

So sorry about you suffering through a PE. I think all the TK drugs can cause this. I am on Gleevec and had a PE three months into taking it. They ended up draining 2 quarts off my lungs. That was what they measured. It doesn't count what they spilled on the floor trying to transfer it over to the counter to measure. I weighed 10 lbs less after they drained it away. I felt terrible afterwards for a couple of weeks but thankfully it never came back. Good luck and hopefully they get it under control quickly.

[td1961]

Hi Pat,

Don't give up yet! Stick in there with me! My PE's took about a month to resolve so don't get in too big of a hurry. I think it will resolve on its own and you should start getting some relief soon. What you need is KING CRAB because they have allot more meat on them and somewhat resemble sprycel patient's with PE's! Very Crabby! So far so good on the tasigna at 450 mg/d. I take two 150's in the morning and one 150 in the afternoon. Only a slight bit of nausea so far and some bone/joint pain. Maybe a little loose stool now and then but nothing like gleevec sharts. Maybe it's too soon to pronounce sentence? Here's hoping the side effects are few and the benefits are many.

Take care and we're rooting for you!

Tracy

[BethG]

Pat,

No fair! Sorry you are still so uncomfortable. It does sound like PE takes time to clear up, based on what others have said. This too shall pass and you will have better days ahead. Thinking of you...

Big virtual hug,

BethG