14 replies to this topic

[bkspecialk]

Hello to all....this is my first time posting on here.  I have been coming to this site for months and just reading.  I was diagnosed with CML July 2010 I was on Gleevec for the first year. I started Sprycel the end of August.  I am getting really scared now because all my numbers keep dropping.  I have been anemic since January but it is much worse since starting Sprycel.  My HCT is 27.7, my platelets are at 93. I can't breath good and very tired.  Have any of you had similair problems?  Thanks Sherry

[valiantchong]

You will need to monitor your PCR. If your response is good, may be achieved MMR or CMR whithin 6 months. You could talk to your doctor to reduce the dosage. there is a member in the group here was anemic and his ANC droped below 1. His doctor reduced his dosage to 20 mg. I do not know your present dosage, however you could talk to your doctor for any possibitiy to reduce the dosage and see the response. By the way the person I am talking who had successfully reduced his dosage is Micheal or know as Scuba. You could check his post here. http://community.lls...e/115763#115763

[bkspecialk]

Hi, Thank You for your response.  Im on 100mg a day of Sprycel.  I was on 400mg of Gleevec.  I did not achieve MMR or CMR after a year of Gleevec.  My PCR is still an issue.   I will check out Michael/Scubas posts.  Thanks Again! Sherry

[ChrisC]

Hi Sherry,

Welcome, glad you are posting now! It is scary when things change: this is the time to share your concerns with your onc [and with us!], ask lots of questions, get answers that you understand, etc. Maybe there are some tests to be done, etc., to help your onc understand your situation more and so give you peace of mind while making any necessary changes.

One thing you said, ". . . I can't breath good and very tired. . . . " did make me go re-read the article about Sprycel recently in the news: http://www.dailymark...tol-myers-drug/

In it, it says, "The US regulatory body [US Food and Drug Administration (FDA)] stated that treatment with the drug [Sprycel] may elevate the risk of high blood pressure in the lungs' arteries. The disorder is referred to as pulmonary arterial hypertension (PAH). The FDA stated that due to high blood pressure the heart has to work harder to pump sufficient blood through the lungs. Consequently, the heart muscles stand the risk of becoming weak which may cause them to loose the ability to perform the above function. Breathlessness, fatigue and swelling of body parts (such as the ankles and legs) are the common symptoms associated with PAH." Ask your onc if this condition is a concern for you. The more we know, the better we can communicate our concerns to our oncs. Then we can rule out what isn't relevant and not suffer or worry anymore.

Best of luck!

ChrisC

[Happycat]

Sherry,

Welcome, and glad you found the site.  The breathing thing caught my eye, too.  Some people get pleural effusion with sprycel, which might make it harder for you to breathe.  You might want to call your onc, just in case.

There are lots of people on here who can discuss the anemia issues, much better than I can.  I hope it gets better for you quickly.

Take care,

Traci

[Susan61]

Hi Sherry:  I am glad you joined in with us.  I have been on Gleevec for 11 years with a good response.  I did not get a response real quick when I started on the Gleevec.  I do know that Sprycel can cause some pulmonary edema, and you could be having a problem with your shortness of breath.  I hope your keeping up with your Oncologist and letting them know everything that your feeling.  There are a lot of people on here who have switched to the Sprycel, and are doing very well.  Please keep us informed, and ask questions.  There is always someone here to help you out.  I have been living with CML for almost 13 years now, and the just have to be sure your on the right treatment that works for  you.

Susan

[scuba]

Hi Sherry - I followed a very similar path to yours.  I was first put on Gleevec and after several months it was clear it was not effective although it did get the CML symptoms relieved.   I was then switched to 70mg Sprycel and it clobbered my cell counts in just a few weeks down to ultimately 0.1 ANC (very bad).  I was taken off Sprycel altogether and it took many months for my cell counts to recover (although I started Curcumin at that time and that may have slowed the recovery of bad & good cells).  Your Oncologist may do the same and reduce your Spyrcel - but don't wait.

Personally - I feel 100 mg Sprycel is way too high for you - and could be causing other side affects.  The researchers are finding that full doseage Sprycel may not be necessary for effective treatment.  Unlike other drugs, repsonse to Sprycel is not dose dependent.  All you need is just enough to get the dynamic moving down and response can be quick (just enough to get over the hump).  I am on 20mg. sprycel now.  I have been at this level for just over 4 months and have managed to stay on it as my cell counts are holding steady  (still low, but liveable).  I have no side affects.  My PCR dropped 2 orders of magnitude in two months and I go in for a major work-up including bone marrow three weeks from now.  I fully expect another major drop in PCR to below the MMR level if not outright PCRu.

I do take Curcumin along with Sprycel.  There is some evidence that Curcumin may be enhancing the Sprycel induced response enabling me to take a much lower dose and still get a deep response.  One strange result when I started Curcumin (back in February) is that my FISH levels dropped to zero while I was off all drugs - just taking Curcumin.  My PCR, however, was unaffected.

High dose 100 mg. Sprycel is nasty.  It affects the good cells as well as bad and is definitely implicated in myelosuppression (which you have).  At only 70 mg, my Neutrophils were getting wiped out.  There are hypertension issues as well in conjunction with pleural effusion.  Personally - you should drop doseage now and monitor.  Fifty miligrams would be reasonable.  I was surprised that Dr. Cortes dropped me from 70mg. to 20mg straight away.  I thought he would drop me gradually to 50 mg first and monitor.

One final thought - Dr. Cortes has me on 20mg Sprycel as an "experiment".  He very much wants to tailor my dose to myelosuppression response.  Since my PCR dropped, he is pleased to keep me at that level.  I asked several times about increasing my dose to 40mg. to get a deeper response and he said it was not necessary and lower is healthier as long as the bad counts are dropping.  I might add, however, that he was surprised at the depth of response on just 20mg.  It was a big surprise in fact and he ordered me re-tested for PCR believing it was a false report.  A second test done 3 weeks later re-confirmed the findings and even showed a further drop (quarter log) in PCR.

I have my energy back and if it wasn't for the fact that I take a little white pill every night that costs a small fortune, I would not know I have any disease.

Sprycel is going to work for you.  Get the dose right and enjoy a glass of wine (1997 or 2008 Château Latour, Pauillac, Bordeaux, France = yum yum).

Michael

[Cathy]

Sherry

Welcome to the board its a wonderful place for support and questions. I was on Gleevec first, then Tasigna now sprycel. When I was on 100 mg my counts dropped and stayed ANC under 1.00 we tried it for  a few weeks and I have now been on 50 mg for about a month. My counts are still low but my Anc came up to 2.00 so this is where I'm going to stay for now. I just had my PCR in and I am waiting for the results to see if my Fish held still at 0 and what my PCR is. I had my first Fish 0 a month ago but had to drop my dose to 50 mg for my counts. I am still pretty tired but I think that will get better the longer I'm on the lower dose. So good luck to you and I would think your Onc would lower your dose soon. Best of luck to you on your journey,

Cathy

[bkspecialk]

Hi Michael,

Thanks for you response! I think I am a little panicked because of my HCT of 27.7, my onc does blood transufusions at an HCT of 25 and I am steadily dropping.  I really don't want to have to go through that, but I do have faith in my onc, so far she has been great.  I have a PCR/BCR test in a month.  When I was first diagnosed I ended up in the hospital....my spleen was HUGE.  My platelets were over a million.  I was scared then.  This is the second time now where I am worried.  I'm just trying to not think about it to much.....I have a 12 year old daughter to focus on.    I will ask my onc about the lower dose of Sprycel.  I must say that I do like the Sprycel much better than the Gleevec.  Gleevec was a roller coaster of side effects.  Of course the 100mg of Sprycel has its own...but not like the Gleevec.  I am doing a clinical trial for the side effects of both medicines. By the way I know I shouldn't of but.....I did have a glass of wine last night!

Thanks again

Sherry

[bkspecialk]

Everyone THANK YOU for all your responses and making me feel welcome here!  It is good to have people to talk to that can truly understand what its like to deal with CML.  I will keep posting here it's awesome!  Best of luck to all of you!

Sherry

[scuba]

Hi Sherry,

You will be fine.  You just need to have your dose monitored to get Spyrcel to the level that is correct for your body.  Your Onc. should definitely be on top of the latest research about dose and how important it is to lower when appropriate.  The earlier protocol was to keep you at maximum dose and use 'stim' shots to boost the production of cells, but evidence exists that this may also boost the Leukemia.  Stim shots have their place especially if there is no alternative, but usually dose reduction is the solution.  If your Onc. does not want to lower your dose - you should get a second opinion from the specialists (M.D. Anderson, and other places).

Cheers to a long life.

Michael

[Trey]

Anemia causes shortness of breath due to insufficient oxygen in the blood.  The body sends signals to breathe more deeply.  But since Sprycel can cause pleural effusion (water around the lungs) it should be monitored.  It is unlikely any serious issue, but always tell your doc about such things.

Regarding transfusion, it is better to base the need for such on HGB, not on HCT.  HCT can be less useful when someone has anemia caused by the combination of CML and TKI drug.  When HGB gets below 6 you will need a transfusion.  Here is some info:

http://www.wadsworth...ue/redblood.htm

[bkspecialk]

Hi Trey,

Thank you for the info.  That is very helpful and I feel much better about it now.

[Tedsey]

As a person who has suffered from severe anemia, your difficult time breathing may be low hemoglobin.  Have you needed any transfusions?  The hemoglobin carries oxygen through your body.  If Hgb is low, then you would have less oxygen in your body.  The result would be fatigue and difficulty breathing.  You may also experience a racing heart.  Although anemia is relatively a rare side-effect, it seems to be more common than pleural effusion and the new warning about increased blood pressure (unless you have pre-existing hypertension or heart issues).  When my Hgb got below 5, I could really feel it.  Most people are symptomatic and transfused around 8.7.  But each person has his or her own threshold.

Hope you feel better soon,

Teds

[Tedsey]

Oh, my onc's nurse said with pleural effusion, there is usually a cough with it that won't go away.