43 replies to this topic

[Buzzm1]

Been on 200mg Sprycel since Jan, 2014. Pcru on 4/2016.
Thnks,
Winespritzer

Winespritzer, is the 200mg of Sprycel a typo?

[beno]

Dear Beno,
How did the anemia improve?
Mine is worsening...I thought the breath shortness was high humidity. My onc recommended more exercise and green vegetables. Been on 200mg Sprycel since Jan, 2014. Pcru on 4/2016.
Thnks,
Winespritzer

My anemia has just improved over time.  My hemoglobin was down to 6.6 and I took a ten day break from Sprycel.  During that break, my hemoglobin started climbing and it kept going after I started Sprycel again.  It plateaued around 12 so I'm still lower than "normal", but there is a big difference between 12 and 7 for sure.  I asked my oncologist about eating veggies high in iron.  She said she would never tell me not to eat vegetables, but that anemia from CML is different than iron-deficient anemia and diet wouldn't help it.

[kat73]

Snowbear, I know what you mean by "too much."  It really is.  But somehow you will bear it anyway.  This is scary, but it seems like you're about to get to the bottom of it, and soon they'll have a plan for you.  The main thing is to treat whatever it is and get better.  I'm really mad at them for stringing you along all this time.  I had to look back to see how long you had been languishing, and it just seems to me that it was an unconscionable amount of time.  The cardiologist should fit you in and answer ALL your questions!

[winespritzer]

Hi,
Right,I am on 100mg Sprycel.
I really think my low hgb and rbc numbers are from the Sprycel not my diet. My ferritin, folate,B12,iron are ok. I go to the gym a few times a week and eat green vegetables every day. But I will increase both and hope for the best.
My onc never attributes any of my side effects to Sprycel.
Winespritzer

[gerry]

You need to send your doc to the Sprycel web site http://www.sprycel.com/

SPRYCEL may cause serious side effects, including:

• Low Blood Cell Counts: Low blood cell counts are common with SPRYCEL and can be severe, including low red blood cell counts (anemia), low white blood cell counts (neutropenia), and low platelet counts (thrombocytopenia). Your healthcare provider will do blood tests to check your blood cell counts regularly during your treatment with SPRYCEL. Call your healthcare provider right away if you have a fever or any signs of an infection during treatment with SPRYCEL

[winespritzer]

Thanks Gerry,
I read this last night and am thinking I should find a cml specialist, not stay w an onc generalist. When I examined my blood results, I was bothered that it didn't appear as if my diet is off. And I don't think I have internal bleeding.

I just wish the onc had said, maybe it's the Sprycel And we'll see how the results look in October. And if the symptoms worsen, come in right away. And sometimes these numbers go up and down...

Hoping my energy returns from more walking, etc.
Thanks so much. What would we all do without these boards?
Winespritzer

[gerry]

My doc deals with a variety of leukemias as well as doing BMT, he has a good knowledge of the side effects and was always sympathetic to them.
You need to find a doc that you can work with, most of us are going to be with them for a long time. :-)

[winespritzer]

Thanks Gerry
You are right, I have been getting support from this site and my other doctors for over 2 yrs.
I didn't want to change Drs. because I'd be with a new lab. My Dr joined another grp and changed labs anyway. Yuk....
Winespritzer

[snowbear]

Snowbear, I know what you mean by "too much."  It really is.  But somehow you will bear it anyway.  This is scary, but it seems like you're about to get to the bottom of it, and soon they'll have a plan for you.  The main thing is to treat whatever it is and get better.  I'm really mad at them for stringing you along all this time.  I had to look back to see how long you had been languishing, and it just seems to me that it was an unconscionable amount of time.  The cardiologist should fit you in and answer ALL your questions!

 

My PCP's office called yesterday and said the Cardiology office had a walk-in clinic every day from 8-11 so I stopped by this morning and saw a PA.  She says the echo looks pretty good overall and my vitals are good (of course they are when I'm sitting down! lol) but she ordered two blood tests to screen for heart failure and blood clots.  I go back tomorrow for a stress echo.

 

My rheumatologist also called me and she is more concerned about the pulmonary pressures.  It was 31 this time, down from 35 not quite 2 years ago.  According to the American Heart Association's website, normal is <15 and anything >25 is considered PH with 25-40 being mild.  She referred me to a pulmonologist who I see in two weeks to confirm or rule out pulmonary hypertension which goes along with rheumatic diseases.

[kat73]

This is all so hard to wait through.  But you've got their attention and you're going to get some answers.  Once when I was bemoaning something or other to a very dear friend, she said simply, "But, it's doable."  For some reason, that helped.  I repeat it to myself a lot of times when I'm scared and there's one more thing gone wrong with the old bod.

[snowbear]

Well, I saw the pulmonologist and he wants to review my echo and other test results with the cardiologist who is out of town until next week.  He had another doctor in his office, who has more experience with pulmonary hypertension look at my scans, and he feels because my pulmonary artery and heart all look really good which usually don't with PH, the higher than normal pressure is not worrisome.  So most likely, this will be "watch and wait" with repeat echoes every so often and if things get worse, then they will do a right heart cath to determine an accurate pressure.

 

He also said that treatment for rheumatic related pulmonary hypertension is more aggressive treatment of the underlying disease and PH meds only if that doesn't work.  I should be restarting Rituxan infusions soon, so we will see if that helps any. 

[thatguy]

Hoping for some good news Snowbear!

[kat73]

Sounds like a plan, Snowbear.  How are your eyes doing?

[snowbear]

Sounds like a plan, Snowbear.  How are your eyes doing?

 

I know it wasn't the best idea, but I skipped the Gleevec for a few days and my eyes cleared right up and the swelling went away. I'm back on it now and they're still doing okay as long as I use the lubricant eye drops. Hope I can maintain it without needing the steroid drops again. 

[Trey]

Snowbear,

 

Have the docs try to determine if you have fluid build-up around the heart (pericardial effusion), not just around the lungs.  This pericardial effusion can be caused by Sprycel and can sometimes cause the symptoms you have since it makes the heart work harder due to external pressure from the fluid.

[snowbear]

Snowbear,

 

Have the docs try to determine if you have fluid build-up around the heart (pericardial effusion), not just around the lungs.  This pericardial effusion can be caused by Sprycel and can sometimes cause the symptoms you have since it makes the heart work harder due to external pressure from the fluid.

Yes, the doctors feel they have ruled out every possibility other than pulmonary hypertension and the cardiologist feels that even the risk of it being that is too low to do a right heart cath (different from heart caths to look for blockages). 

 

This is my second incidence of shortness of breath & chest pain.  The first time, it came on about six months before the CML diagnosis and got better once I started Gleevec.  Within a few months, I went from being unable to curl my hair without getting out of breath to walking 4 miles at a park - that triggered an arthritis and back pain flare, but my breathing was good.   This time, I've also developed a cough after exertion.

 

I had a chest CT scan, echo, stress echo (which didn't check pulmonary pressure or pulse ox), EKG, walk with pulse ox, and bloodwork to screen for clots and blood failure.  All came back normal except the pulmonary pressure was on the high side (31-35), but the docs say with everything else looking good, it's not high enough to pursue further testing. Maybe the pulmonologist will change their mind.

 

I've wondered if maybe I'm just deconditioned, but it seems too severe.  I haven't been walking or going to the gym like I use to, but I haven't been on bed rest or in a coma either.  I've been carrying laundry and groceries my whole life without having problems and now it is.  Hanging curtains nearly put me in the ER. Making the bed is near impossible.  It's getting absurd.

[snowbear]

Only when I'm out of breath.  I'm perfectly fine in between episodes and at night.  The symptoms come on with exertion.

[hannibellemo]

Mr. Tee,

 

I'm curious as to why you asked about the random deep breaths as I do that occasionally and your description is right on.

 

Pat

[kat73]

I was going to offer a smartypants remark yesterday, but didn't want to carry the thread away from Snowbear's serious problems, that yes, I experience the fairly frequent need for an all-in sigh, like I'd forgotten to breathe for awhile, and I have been assuming that it was due to The Way We Live Now, especially as we wade through the election morass here in the US.

[Gail's]

Yes, I have noticed the occasional deep breath while at rest. Like sleep apnea while awake? New for me after 3 months or so of shortness of breath with exertion