22 replies to this topic

[simone4]

I guess I have no choice but to switch to Sprycel.  I am so sensitive to drugs

that I have been on Gleevec, 300mg,for 6 years.

Onc is switching me due to allergic reaction (hives) and thyroid problems

which may be Gleevec induced.

 

What are your experiences when you first started.  (On high dosages, I have

read of your nightmares).  Did anyone start with 20mg?  40?

 

I will only take it if I can start out on 20mg.  I'll see how that flys with

the onc.  I'm sure he will start with more.

 

Thank you in advance.

Simone

[scuba]

Simone,

 

I was prescribed 20mg Sprycel when myelosuppression became a big problem. My oncologist wanted to start me low and build up rather than start high and work down. He felt that as I had no significant blasts, risk of progression was low enabling me to try low dose then test PCR response in 3 months. I asked, "shouldn't I test in one month?", and he said no - CML is a slow disease when blasts are little present - so we have time to see if the low dose works.

 

As it turned out, I responded very well to 20mg. Sprycel. My PCR dropped dramatically (because I was able to stay on the drug). He left me at this dose as my new treatment plan. I remained at this dose until I decided to stop Sprycel on my own initiative this past February to test remission durability. 

[hannibellemo]

Simone,

 

As I recall you are bouncing in and out undectable so 20mg should be a reasonable starting point. 50 would probably be just fine, too. I wouldn't get too hung up between the two. (Lots of variations of "to, too and two" in that sentence.) 

 

I've had some concerns recently at 50mg. with shortness of breath and no detectable pleural efflusion. I had an EKG on Tuesday and I'm waiting for the results (mostly looking for pulmonary hypertension). I'm also having trouble regulating my isolated systolic hypertension. I have a wide pressure spread so anything that lowers systolic lowers my diastolic too much. At 5'11" and 63 years of age, 100/60 just doesn't cut it for me. I'm stopping everything and seeing if I really need it. I was under the impression I had to be in the 120-130 range and that doesn't appear to be true for this type of hypertension and my age.

 

I know you are very concerned but just remember you have us to back you up! I feel the same way about ever having to switch from Sprycel, as much as I hated it at first! 

[simone4]

Scuba, thanks for that info.  The reason you switched from G. was myl.suppression,  right?

The hives came back yesterday with vengence so I will do what I have been dreading,

taking the Medrol pack of prednisone. I stopped the G. for two days thinking it would

resolve, but I must rid myself of these hives before taking Sprycel.

(The hives may be the thyroid).  Will come to Houston to see your onc.

if I can't get mine to see the reason behind this.)

Did 20 mg ever send you to ER?  I have a dread of hospitals.

Rambling, sorry.

Take care.

Simone

[simone4]

Simone,

 

As I recall you are bouncing in and out undectable so 20mg should be a reasonable starting point. 50 would probably be just fine, too. I wouldn't get too hung up between the two. (Lots of variations of "to, too and two" in that sentence.) 

 

I've had some concerns recently at 50mg. with shortness of breath and no detectable pleural efflusion. I had an EKG on Tuesday and I'm waiting for the results (mostly looking for pulmonary hypertension). I'm also having trouble regulating my isolated systolic hypertension. I have a wide pressure spread so anything that lowers systolic lowers my diastolic too much. At 5'11" and 63 years of age, 100/60 just doesn't cut it for me. I'm stopping everything and seeing if I really need it. I was under the impression I had to be in the 120-130 range and that doesn't appear to be true for this type of hypertension and my age.

 

I know you are very concerned but just remember you have us to back you up! I feel the same way about ever having to switch from Sprycel, as much as I hated it at first! 

Pat, I cannot stand being "out of breath". My dad was a cardiologist and I worked in his office

when I was younger. Anytime someone came in "winded" it scared me.  I thought they were going

to die before he could see them.  I have never aged out of that fear.

When you said you were "stopping everything" did you mean S. or BP meds?  100/60 is

too low. Are you looking at PAH? EKG results should be revealed 15 min after you had one.

Hope things are ok.  Tired of putting out fires with this cancer.  It is way smarter that I am.

Take care.

Simone

[rct]

Two things:

 

Mrs was an early Gleevec user that had a previously failed thyroid, so was in a very good routine with replacement for...decade or so before being diagnosed with CML.  Gleevec totally wrecked her thyroid numbers, we had to work on them hard with our GP, big city big shot university oncs wanted nothing to do with it until our GP sent us to a big city big shot endocrinologist at their big city hospital and all the sudden they were all over it.  We moved on.  The lesson was that Gleevec and thyroid are a very delicate mix, we are changing up her thyroid right now because of a minor change in Gleevec, doesn't take much.

 

Mrs been really bad white counts and ANC for 7 years now.  It happened out of nowhere, PCRu, going along great BAM!  cbc came back with no ANC at all.  The only thing preceeding it different was...drumroll...prednisone pack for what may have been a tick bite and the docs didn't want to mess with Lyme, we have that around here, so they defensively gave her a big fatty of pred for two weeks, start high, go down.  That was the only thing different in her life after two years of PCRu.  Two years after all the low counts started, in Oregon seeing Druker, they were extremely interested in that steroid preceeding her counts tanking.  Very.  Wouldn't link it, but he muttered about it being a concern for a long time.

 

Good luck Simone.  I hope the new meds work out for you and you can wrangle that thyroid into place.

 

rct

[simone4]

Two things:

 

Mrs was an early Gleevec user that had a previously failed thyroid, so was in a very good routine with replacement for...decade or so before being diagnosed with CML.  Gleevec totally wrecked her thyroid numbers, we had to work on them hard with our GP, big city big shot university oncs wanted nothing to do with it until our GP sent us to a big city big shot endocrinologist at their big city hospital and all the sudden they were all over it.  We moved on.  The lesson was that Gleevec and thyroid are a very delicate mix, we are changing up her thyroid right now because of a minor change in Gleevec, doesn't take much.

 

Mrs been really bad white counts and ANC for 7 years now.  It happened out of nowhere, PCRu, going along great BAM!  cbc came back with no ANC at all.  The only thing preceeding it different was...drumroll...prednisone pack for what may have been a tick bite and the docs didn't want to mess with Lyme, we have that around here, so they defensively gave her a big fatty of pred for two weeks, start high, go down.  That was the only thing different in her life after two years of PCRu.  Two years after all the low counts started, in Oregon seeing Druker, they were extremely interested in that steroid preceeding her counts tanking.  Very.  Wouldn't link it, but he muttered about it being a concern for a long time.

 

Good luck Simone.  I hope the new meds work out for you and you can wrangle that thyroid into place.

 

rct

rct, thanks so much for that info. Your wife has been through so much.  The more I read

about my thyroid is that Gleevec could be responsible. My endo gives it a name and said that

thyroid failure is in the near future.  But because my TSH levels are normal, she is not treating it.

Your wife, does she take synthroid?  I think I would feel better if it were treated, maybe the hives

would go away.

Advise is taken on prednisone.  I wouldn't past the first dose.  I am in such an "excitable" state

that I might end up at our state mental institution. (Another fear of mine).

Take care. You are the generous husband and I admire you for that.

Simone

Edited by simone4, 17 September 2015 - 04:37 PM.

[scuba]

Scuba, thanks for that info.  The reason you switched from G. was myl.suppression,  right?

The hives came back yesterday with vengence so I will do what I have been dreading,

taking the Medrol pack of prednisone. I stopped the G. for two days thinking it would

resolve, but I must rid myself of these hives before taking Sprycel.

(The hives may be the thyroid).  Will come to Houston to see your onc.

if I can't get mine to see the reason behind this.)

Did 20 mg ever send you to ER?  I have a dread of hospitals.

Rambling, sorry.

Take care.

Simone

 

Hi Simone,

 

I switched from Gleevec primarily because it wasn't working at the lower dose needed to prevent myelosuppression.

At 400mg. I had an immediate blood response (counts returned to normal; fever and other disease symptoms went away quickly). but slow CML response. Continued Gleevec treatment and myelosuppression kicked in. The thinking at the time was that I would overcome the myelosuppression with stim shots or a lower initial dose. My myelosuppression continued and I had to stop Gleevec for a few weeks. I decided to change oncologists and seek an expert in the field who had a lot more experience with CML than my first oncologist. I avoided stim shots. At my new doctor's clinic (M.D. Anderson) he wanted me to avoid stim shots as well and instead wait until my ANC rose above 1.0.

 

A new FISH test showed I was back at 100% with borderline accelerated Blasts just like at diagnosis but without the disease symptoms (i.e. fever, fatigue, sky high WBC'). My CML just mushroomed back when Gleevec was suspended. Once my ANC went above 1.0, I was started on 70mg Sprycel (I also started Curcumin around that time (8 grams 95% curcuminoids)). The Sprycel tanked my ANC numbers faster than Gleevec ever did - and in only a few weeks my ANC had plummeted to 0.1 (not good). I had to stop Sprycel. The new plan was to let my ANC come back to over 1.0 again and then re-start Sprycel at 20 mg. and work up.

 

The good news during this initial 70mg. of Sprycel was that my FISH level dropped significantly and my blasts reduced to normal. But unlike when I stopped Gleevec and my ANC rose quickly, my ANC this time did not rise as fast. I was off Sprycel for about 3 months as I watched my ANC rise slowly .. 0.4 ...0.5, 0.6, 0.6, 0.6, 0.7 .... etc. It was a glorious 3 months. No drug and I felt great. Noteworthy was that my FISH during this time didn't change when it was measured, in fact, it continue to drop (just a bit lower) without any drug at all over those three months. 

 

When my ANC finally went above 1.0 (at 3 months), I was restarted on 20mg Sprycel and sure enough my ANC number started to drop again - but this time it stabilized at around 0.4. My oncologist said he was fine with me staying at Sprycel 20mg. with no more drug breaks. And from that moment on, my FISH went to zero in a few months and PCR dropped to MMR a few months after that. My ANC slowly rose back to near normal  (1.5-1.7) as I continued taking 20mg. Sprycel. I had crossed over. Because 20mg. Sprycel was working I was kept at that level and dose increase was cancelled. As mentioned before I managed to obtain PCRU on this low dose*

 

I have never been to the ER. When I took 70 mg sprycel, I felt the headaches and the "strange feeling" shortly after taking it. When I re-started on 20mg. I felt nothing. No side effects that I could feel.

 

Hope this is useful to you.

 

*(I also take upwards of 8 grams of Curcumin a day which I believe enhanced the effectiveness of low dose Sprycel. It is my opinion based on my own research and consultation with researchers in the field. Others in this forum poo poo Curcumin as is their prerogative. When I asked my doctor if Curcumin was helping he told me - "maybe it is - maybe it isn't. We'll never know without a clinical trial.").

[simone4]

Scuba, thanks for that reminder. I have followed your journey but forgot the

details about your ANC.  My counts have been low for 6 years. Sprycel will

knock them down even more if I don't start out at 20mg and go up.

Hope I don't feel a thing, either.

[hannibellemo]

Hi, Simone,

 

Just stopping the lisinopril/hctz. I don't know if my systolic blood pressure is really that high based on what I'm reading and my diastolic is generally below 70-75.

 

Although I've been off Sprycel since Tuesday, the idea of pulmonary hypertension like Pam's really scares me. I should hear tomorrow. It was probably read by cardiologist and sent to doc today but Thursday is his day off.   Should hear tomorrow. I assume if it were a matter of life or death I would have heard earlier, but I may assume too much.

[scuba]

Scuba, thanks for that reminder. I have followed your journey but forgot the

details about your ANC.  My counts have been low for 6 years. Sprycel will

knock them down even more if I don't start out at 20mg and go up.

Hope I don't feel a thing, either.

 

The irony is that after 8 months off Sprycel, my RBC's are still below normal, although my hemoglobin and hematocrit have now normalized (I feel better during my daily runs). I do wonder if TKI's have some sort of lasting "impact" on the blood system. Before my diagnosis, my RBC's were solid normal. I developed CML, began treatment, have since stopped, but still have below normal RBC's even after 8 months (although they are higher than when I was on Sprycel and are close to the normal range (i.e. 3.9)).

 

As long as you have close to zero blasts you are little risk of rapid progression while you try 20mg. Sprycel. It either will work or it won't - and if it doesn't you have time to adjust. 

[MsLaLa]

I literally just started 100mg Sprycel yesterday. I'll report on the board if I have any side effects.

[rct]

rct, thanks so much for that info. Your wife has been through so much.  The more I read

about my thyroid is that Gleevec could be responsible. My endo gives it a name and said that

thyroid failure is in the near future.  But because my TSH levels are normal, she is not treating it.

Your wife, does she take synthroid?  I think I would feel better if it were treated, maybe the hives

would go away.

 

Her thyroid failed completely in the mid 80s.  She took synthroid for decade or so.  The maker was found guilty of maniuplating test data and artificialy keeping the price up, so she stopped using it a very long time ago, there are others now that the original is out of the way.  Gleevec interferes with the uptake of thyroid hormone, that causes ones TSH to be high, meaning the body is asking for more thyroid.  If you are presenting with high TSH out of nowhere it could be because of Gleevec and your metabolism.  We found that years of the same dose went completely haywire after Gleevec, but the drs were not interested at all.  Since then we've helped three oncologists with their own thyroid deficient patients along the way, they too had not made the connection.

 

Good luck Simone.

 

rct

[simone4]

rct, my TSH is normal, that's why they will not give me thyroid meds.

My thyroid antibodies are elevated, indicating an autoimmmune

disease call Hashimoto. This is according to the endocrinologist.

Trey mentioned Gleevec was inducing the thyroid problem, and

that may be true.

I see onc next week and he will switch me to Spycel and I will

probably only tolerate that a week before I just STOP.

 

So tired of hives, anxiety about a change, etc. I just don't

think I want to do this anymore.

 

Do you still go and see Dr. Drucker (sp?).  He really wants

her to stay on Gleevec even through all the rough times.

I wish to e-mail him and see his take on my onset of hives

to gleevec after 6 years.  I wonder if this has happened to

any of his patients.

 

Thanks for listening.

Simone

[OhNanna]

I was diagnosed Hypothyroid/Hashimotos about a year before I was diagnosed CML.  I take 25mg Levothyroxin.  When I picked up my first prescription of Gleevec, the Pharmacist advised me that Gleevec and thryroid meds do not play well together.  He advised that I take them at least 4 hours apart.   Just a thought. 

[Lisa Lisa]

Your question of Has anyone started on a low dose of Sprycel ..

I started on 100 mg Sprycel mid March 2015.  Quickly hit MMR and am presently PCRU.  My doctor has agreed to continue me at 60 mg. going forward, but only if I do PCR every 6 weeks on a trial basis   (I have had severe headaches since starting).  Although I was surprised the doctor approved a "trial run" of a lower dose, I am hoping it makes a difference with the side effects, and that the PCRU does not change. I will keep you posted on the results at next PCR, which will be in 6 weeks.  

Good luck to you.

[scuba]

Your question of Has anyone started on a low dose of Sprycel ..

I started on 100 mg Sprycel mid March 2015.  Quickly hit MMR and am presently PCRU.  My doctor has agreed to continue me at 60 mg. going forward, but only if I do PCR every 6 weeks on a trial basis   (I have had severe headaches since starting).  Although I was surprised the doctor approved a "trial run" of a lower dose, I am hoping it makes a difference with the side effects, and that the PCRU does not change. I will keep you posted on the results at next PCR, which will be in 6 weeks.  

Good luck to you.

 

Lisa,

 

You have had a terrific response on Sprycel going from diagnosis to PCRU in six months (or less). That is tremendous. 

So - in your case - side effects management (headaches) can be more of your focus in treatment. It would not surprise me at all that you could maintain PCRU on only 20mg Sprycel for years and avoid the headaches (and other side effects potential) completely. You could also be a candidate for cessation after a couple of years. Your doctor would have to agree with doing this of course.

 

In my case, Dr. Cortes, started me out at 20mg first and gauged response first. It turned out o.k.. Perhaps your doctor would consider the same. Worse case you show an increase above PCRU and have to raise your dose.

[Buzzm1]

 

In my case, Dr. Cortes, started me out at 20mg first and gauged response first. It turned out o.k.. Perhaps your doctor would consider the same. Worse case you show an increase above PCRU and have to raise your dose.

Scuba, been meaning to ask you, when exactly did you switch to 20mg Sprycel and what was your PCR reading at the time?

 

Thanks,

Buzz

[scuba]

Scuba, been meaning to ask you, when exactly did you switch to 20mg Sprycel and what was your PCR reading at the time?

 

Thanks,

Buzz

 

When I was started on 20mg Sprycel, my P'CR was over 100% and FISH was around 70%. I had been off all therapy for 3 months due to severe myelosuppression. This was back in late 2010 early 2011. I don't have the exact dates of the tests in front of me and relying on memory. Once I was able to stay on 20mg Sprycel therapy my FISH dropped to zero in seven months and my PCR fell below MMR shortly thereafter. 

[DebDoodah22]

If you have been sitting near undetectable, I bet you could start out low.

I am still on 80mg. I have been having shortness of breath for a few weeks and BP has been sitting around 140/75. I See the Onc next week but this cough is making me startt to wonder if I should go in early. Do they screen for pulmonary hypertension with EKG only? I never know what to do ...PCP or ONC? But I am fired of feeling crappy!