15 replies to this topic

[Dona_B]

So I went to the doctor's office for the 4th time since March for the same symptoms: sinus,cough, weight gain etc + a few more like complete exhaustion, out of breath just walking in. Like last time expressed my concern over weight gain (15 pounds since November, 45 since diagnosis 2 1/2 years ago) at the scales.Third visit the nurse said something to the effect we all have that problem. Today the nurse said well you are that age. So, on to sinus type symptoms as we walk to room. And its everyone has it and it's taking more than one visit. So we get to the room and it's more of the same menopausal diagnosis etc.... And I'm getting frustrated because I have been sick since March and just getting worse. So I'm ready to cut my losses and leave because once the menopausal diagnosis there's no point in continuing because the frustration of not getting better just supports the menopausal diagnosis. Also, wondering if this is why they have started collecting co payment first.

 

 

[Trey]

Have you been checked for pleural effusion?  A chest Xray may be in order.  Most of your symptoms would suggest this (out of breath, exhaustion, weight gain, cough) but you also may have a couple issues going on. 

[Dona_B]

Trey, you and the nurse practitioner at the oncologist office must be thinking the same thing...chest x-ray blood work. Doubt they will do what I want and reduce me from 80 mg Sprycel to 20 or 50. From the voice mail sounds like they want to try something else. Hoping it does not mean trying a different TKI. At this point I'm still thinking bad sinus as I had not antibiotics until today. A chest x-ray from early March when all this started was clear but then again, I quit Sprycel while I was waiting to get into the doctor.

[Buzzm1]

Dona_B, see from your Signature line that you reached MMR (MR3 0.1%) on 02/16.  What was your 05/16 PCR reading?

 

You could split your 80mg into 40mg doses to see if that makes a difference.  

[Marnie]

Sprycel should not be split into 2 smaller doses per day.  It increases the risk of pleural effusion.

[Buzzm1]

Sprycel should not be split into 2 smaller doses per day.  It increases the risk of pleural effusion.

The dose would be 40mg/per day.

[Dona_B]

My last BCR-ABL was 0.0302, up from January's 0.0047. In a nutshell it took me almost two years to reach MMR. My first one is beyond confusing as one BCR-ABL is non-IS and 255.52% and the one that has IS is still 150.76% which makes no sense. I think I mentioned before my white count was extremely high 418,000 at diagnosis. There were several months of symptoms which I attributed to family history or old age. A MRI that I requested showed a change in bone marrow that lead to the CBC.

 

April's slight increase I'm thinking is due to that 7-10 days off when I thought I had PE and was waiting to get into the doctor. That increase is not going to help my case to reduce my dose.

 

It's funny after I convinced them I wasn't menopausal but sick and tired of being sick and tired for months, the nurse practitioner connected the dots and wondered if the majority of my symptoms were instead side effects. When I shared  that I followed this forum  and your beliefs, she said to push for a lower dose. But it's sounding that regardless of the results of blood work and chest x-ray that the onc wants to try something different which I'm not comfortable with.

 

I need to search and see if there is some sort of poll here of other TKIs and their popularity. -edited

[Dona_B]

Would love to hear from members who started out on Sprycel but switched for one reason or another. For that matter, would love to hear from anyone who switched from on TKI to another.

[scuba]

Dona_B ... Sprycel affects the thyroid:

http://www.ncbi.nlm....pubmed/20929406

 

You should have your thyroid checked:

 

TSH

Free and total T4

free and total T3

 

to rule out hypothyroidism. A low functioning thyroid (especially due to Sprycel) will give you the symptoms you described -especiallyweight gain. You can get your blood tested at "any lab test now" location or your doctor. Your doctor will be more expensive.

 

Also - a quick way to tell if something is amiss is to check your basal body temperature first thing in the morning. If your body temperature is below 98 - it could be a sign of thyroid issues (lower metabolism). 

 

I went through this last year into the first part of this year when I stopped taking Sprycel then resumed. It did a number on my thyroid (all sorted out now which is great). My body temperature fell to 97.4 in the morning. Now it is routinely 98.2 in the morning and rises to 99 by afternoon. 

 

Just a thought ... 

[mlk210]

I was on 100mg Sprycel for 16 months, but switched to 400mg Gleevec in March due to two plural effusions. *knock on wood* I feel so much better on Gleevec, but I go to the doctor July 7th for my scheduled appointment. I'm hoping my pcr hasn't gone up. I was undetectable on my last PCR a week after starting Gleevec.

 

You're symptoms sound like mine when I had my PE's, and mine progressively got worse for weeks before I couldn't even go to the bathroom in the middle of the night without gasping for breath.

 

FYI - I take synthroid for my thyroid and my pharmacist told me that the TKI's take the effectiveness of synthroid down. Hence the reason on my drug breaks I went hyperthyroid with heart palpitations and insomnia. Unfortunately, i didn't lose weight!

[Dona_B]

I was on 100mg Sprycel for 16 months, but switched to 400mg Gleevec in March due to two plural effusions. *knock on wood* I feel so much better on Gleevec, but I go to the doctor July 7th for my scheduled appointment. I'm hoping my pcr hasn't gone up. I was undetectable on my last PCR a week after starting Gleevec.

 

You're symptoms sound like mine when I had my PE's, and mine progressively got worse for weeks before I couldn't even go to the bathroom in the middle of the night without gasping for breath.

 

FYI - I take synthroid for my thyroid and my pharmacist told me that the TKI's take the effectiveness of synthroid down. Hence the reason on my drug breaks I went hyperthyroid with heart palpitations and insomnia. Unfortunately, i didn't lose weight!

 

MLK,

Wish I would have read your post sooner. My onc wanted to switch me to Gleevec but let me talk him down from 80 mg Sprycel to 50 mg. Gleevec was my first choice with my first onc but he wanted to start with either Sprycel or Tasigna. If the lower Sprycel doesn't work, may go with his suggestion.

 

Do you have any stomach upset with Gleevec?

[Antilogical]

My experience:  You need to take Gleevec with or after a full meal.  Even so, I also snack on crackers or dry cereal after taking the pill.  Also, keep upright for at least an hour - the reflux is killer.

[mlk210]

Dona,

 

I was nervous to switch drugs and if my doctor would have allowed me to go down to 50mg Sprycel, I would have taken it, but she wasn't up for that. She wanted me on Tasigna, but said we'd try Gleevec after I asked. I don't know if I have less side effects on Gleevec because Sprycel had already drove my CML cells down, but other than muscle cramps in my feet and calves, and a small amount of nausea I've felt better than on Sprycel. Maybe this too is because i was one of the lucky ones who got Plural Effusions but my breathing always seemed restricted on Sprycel.

 

The first month or so, I would get nauseas about an hour after I took the pill, but it would go away within a half hour. I agree with Anthological, crackers or a small snack helped. I started taking it before I ate my dinner and the nausea went away. Now I just stick to my time whether I've eaten or not and the nausea has stopped with the exception of a few days this month. I haven't had any worse stomach problems than what I already had with Sprycel. So truthfully, I'm really happy with Gleevec so far and I continue to knock on wood not to jinx myself! haha.

[Dona_B]

Venting. Much of this has been said before from other CMLers. Reading is optional.

 

I was put on 50 mg Sprycel about two months ago and about three weeks ago started feeling better. Actually feeling like my old self: mowed the yard twice, washed cars back to back days and the second cleaned the interior of that car also, picked beans, made salsa and pizza sauce multiple times. Started catching up on housework. Coughing down, exercising and thinking weight is trying to come down, etc....

 

Today was my quarterly onc. appointment with BCR-ABL and lab results. So I asked about several lab abbreviations on the blood work. Turns out I'm anemic. Again. And onc. blames my fatigue on it but I just finished saying I'm feeling normal. Strange I'm anemic but yet feel so much better over what I've been feeling. Also temp up slightly but I had hat on and drove in with the the top off so I was in full sun. They used one of those forehead rolling ones. Maybe heat caused?

 

BCR-ABL on the way up. Six months ago was 0.0047 and MMR. Three months (after missing several doses due to cough, sinus, and generally feeling crappy and thinking it was plural effusion) up to 0.0302. Today's after two months on 50 mg Sprycel, still trending up 0.0528. MMR grey zone.

 

So, it's talk of switching to Gleevec at the highest dose. The only thing stopping was my script was up last week and results were in and whichever onc. they talked to said I could stay on 50 so I reordered and received today. Hoping my numbers will come down. I've been feeling so good, I've been skipping the vitamins. Hoping Vitamin D regularly will help.

 

Anyway, not really happy with my onc. Not feeling he really heard me today.

[kat73]

DonaB - Here's my opinion, for whatever it's worth.  Your PCR is terrific!  And you should stay with what you're on.  You are finally feeling good - don't rock the boat.  We're all different, but the goals are the same:  to take whichever TKI that keeps us in the safe zone at the lowest dose with the least side effects.  You've got all three boxes checked.  I was one of those miserable with side effects from Gleevec; changing to Sprycel for me was a distinct change for the better.  Some people are just the reverse.  But once you own that zero to the right of the decimal point, and you feel pretty darned good - stay there and dance with the one that brung you. 

[AllTheseYears]

Dona_B, I just have to reply to you because:  1. I went to doctors for many years (Pre-CML) before my thyroid illness was finally diagnosed; you might want to have your thyroid checked regularly because of your symptoms; and,  2. Been there on the menopausal thing.  My former MD 15 years ago kept telling me that I likely was "Perimenopausal," when I complained of fatigue, weight gain, etc.  I finally had had enough and challenged her to check my hormones to see if she were right about approaching menopause.  Amazing!  I was a normal, functioning female for my age.  Then, she did the CBC that revealed my CML, which was advanced.  

 

As for Gleevec, I've taken it for 15 years and have had 14.5 years of PCRU, excluding a six-month break to test cessation earlierthis year. Unfortunately, my CML came roaring back quickly.  It's now under control again (PCRU) on Gleevec 400 mg.  The question of why doctors go to second or third-generation TKIs as first-line treatment is an issue you should ponder - and press your oncologist about.  Gleevec still works for most of us. Gleevec might have more side effects but they generally are milder than those you might experience on later TKIs. I've learned to live with Gleevec's side effects and live a fairly normal life. (Stress "fairly.")  I - and my oncologist - agree, that many oncologist are simply sold on the later, still-patented TKIs by drug company reps. The advantages of the expensive, later drugs are only marginal for most CMLers, and a positive effect on death rates is not proven. (In other words, the later TKIs offer no guarantees.)  Also, consider this, as Gleevec goes generic (and maybe much cheaper one day), insurance companies already are pressuring oncologists to prescribe Gleevec as the first-line treatment.  Damn the side effects!

 

Please keep asking questions and advocating for yourself.  No one should feel so badly on this journey. I'm just offering my experience and hope I've provided food for thought.