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Questions from one newly diagnosed and on Tasigna

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Hi everyone -

I'm in my late 30s, from the United States, married (no kids, no plans to) and have just this month been diagnosed with CML (chronic phase).  I've already gone through the initial freakout stage (I think!) but I still have some questions which I hope can be answered by those who have gone down this path before.

I've been on Tasigna for about 10 days now.  The only real side effect I'm feeling is a painful stiffness in my upper back and shoulders, and a sharp muscle or joint pain in my hips and right buttock when I walk or get up/down from a seated position.  I can barely shuffle 100 yards to the garden or the mailbox before I need to sit down from the pain and discomfort, and any movement during the night immediately wakes me up due to the back pain.  I'm also currently taking hydroxyurea and allopurinol to help reduce my white blood cell counts (from a high of 196k last week - 105k last test) as well as iron pills.

My questions:

1.  I've read that the muscle/joint paint side effects of Tasigna generally wear off after about 12 weeks - has that been the case for most of you?  And do you take anything to help with the muscle/joint pain besides Tylenol?

2.  I vaguely understand that there is a "leukemic count" I'm support to keep track of, and try to get it down by a factor of 10 and then a factor of 100, but I'm unclear on what that number actual is.  Viewing my pathology reports from my bone marrow biopsy it says "ABNORMAL dual fusion signals patterns were observed in 94.5% of the cells".  Is that my number (94.5), or am I looking for something else?  I don't see anything that specifically refers to a BCR/ABL number.  If that is my number, is my goal then to get to 9.45% in 3 months, and then 0.945% in 12 months?

3.  Generally wondering how CML affects people who led fairly vigorous/active lives before diagnosis?  I went from climbing fourteeners last summer to now barely being able to walk for 15 minutes.  Is hiking/climbing/kayaking still in the cards for me or should I start looking for less strenuous hobbies? 

4.  Re: Tasigna specifically... I travel a lot overseas, and I'm wondering how people manage their dosing schedules when you've got to deal with a 6 hour time difference.  Do you gradually bump it up by like 30 minutes each day until you're on the new time zone, or do you rigorously stick to your original time zone schedule and just wake up in the middle of every night to dose?  Also... any problems bringing Tasigna through airports/customs?  And what about having to keep it at 77 degrees F at all times... what if I'm in a place with no air conditioning, or if I'm camped out for a few nights where the temps can dip to around 40 at night and 85-90 during the day?

5.  How should I respond to the question everyone inevitably asks me: "How many years do you have?"   I keep reading that a normal lifespan is the general expectation, but since the median diagnosis age is 65, doesn't that mean that just living another 10 years or so is considered a "normal lifespan"?  What about people diagnosed in their late 30s?  Should I expect to reach retirement age? 

6.  I've never really had to deal with health insurance before now.  So far I have to say the coverage has been pretty great, and Tasigna is 100% free.  But I'm wondering what should I expect down the road... how far have fellow American CML'ers seen their insurance premiums rise post diagnosis vs. pre?  These pills apparently cost $6,000 a month if you're uninsured, so I'm guessing my rates are going to go sky high pretty soon, I just don't know what to expect.  Right now I'm paying $290/month... should I expect this to double or triple by next year?

7.  From time to time (even years before I was diagnosed) I get a very dull stomach pain, which I've always called my "ulcer" but my GP has always said is nothing to worry about.  It generally hits when I have an empty stomach - so in the past I would just snack on something and it would usually go away, or if it lasted more than 12 hours I would take just 1 omeprazole and 9 times out of 10 it would go away.  But now with Tasigna I've got these 3-hour fasting windows in the morning and evening, and omeprazole is specifically forbidden as it interacts with Tasigna.  Just wondering if anyone else has similar issues and has found a Tasigna-friendly alternative to omeprazole. 

Thank you everyone for your time and assistance! 

Hi there

I’m so sorry to hear of your recent diagnosis and I can fully understand and identify with all the emotions you must be feeling.  It’s all one crazy ride!  I was diagnosed last year at the age of 37 and I remember how anxious I felt and how many unanswered questions I had, so I will do my best to answer yours.  Please read my answers but be aware of two things: (1) I’m not on the same drug as you – I’m live in South Africa and am on dasatinib (Sprycel) whereas you are on nilotinib (Tasigna) and (2) I was only diagnosed 8 months ago and am by no means an expert, so I’m just answering from what I have read and from what I have experienced myself.  Anyway, here goes:

 

1.       I didn’t have any joint pain on dasatinib, but I had some other mild side effects – a skin rash, some gastro-intestinal issues and sleep disturbances.  These seemed to diminish in severity as time went by and I found, after 3 months, most of them had almost disappeared.  I still get the odd mild skin outbreak but by no means as severe as it was before.  From what I have read, some people find that their side effects decrease over time and I hope that this is the case for you.  I have also read that some people are able to manage the joint pain by drinking tonic water (with or without gin!).  It seems to be that almost everyone has side effects to one degree or another, but that they can be managed, either by lifestyle or by other medications.  I am sure that, if they persist, your consultant can advise you somehow.  We’re very lucky to have five extremely effective drugs that can be used to manage CML and, if the side effects are severe, you have options!

 

2.       The “leukemic count” you mention is expressed as a BCR-ABL percentage, i.e. the percentage of cells that have the gene causing leukemia, in simplistic terms.  This is calculated at diagnosis and I assume your “number” is 94.5% as you mention.  From what I understand, different laboratories use different measurements and it is possible to convert your percentage to something called the international scale, which is a standardised figure.  Apparently all patients will be standardised to 100% at diagnosis and, according to the NCCN guidelines, we should reach 10% at 3 months and 1% at 12 months of treatment.  So I think it is as you mention – you should get to 9.45% or lower after 3 months and 0.945% after 12 months if you are tested in that laboratory.  This site gives great information about the tests and the NCCN publishes a great PDF for patients which explains everything relating to this test clearly.

 

3.       Maybe I have just been lucky, but I have not experienced any kind of slowdown in my life since having been diagnosed.  I have only taken a few days off work at the beginning when I was first diagnosed, when I had to have the bone marrow biopsy and the associated tests, but since then I was very quickly back to my usual self.  I have found that I need to go to sleep earlier at night, but this is more because of mental fatigue than physical fatigue – the stress of the new diagnosis and the crazy, anxious thoughts in the middle of the night are no fun and I haven’t been sleeping well.  What I have also found, and what others will surely corroborate, is that I feel BETTER after exercising.  On another site I read about someone who had been able to cycle through the Alps after diagnosis, and others who have run marathons.  I hope that you will be back to full fitness sooner rather than later and that you can go back to your adventurous hobbies.

 

4.       Like you, I travel a lot and sometimes to different time zones.  I know that some people do what you mention, i.e. take their tablets a little later / earlier each day until they have adjusted to a new time, but I am so concerned about taking my medication exactly as prescribed that I would never do this.  I am over-careful, but I take the medication EXACTLY at 19h00 South African time every day, to the very second.  This is a little OCD, but I think it’s very important never to miss a dose, and this is the way I ensure that I won’t.  Now, if I travel to another country, I will take it at a time that corresponds to 19h00 South African time.  For example, if I travel to New York, the local time is 5 hours behind South African time, so I will take my tablet at 14h00 New York time when I am there.  If I travel to Sydney, Australia, which is 8 hours ahead of South Africa, I will set an alarm to wake up at 3am for my tablet.  Obsessive, yes, and inconvenient too, especially with a drug like nilotinib that requires two doses per day and fasting – but I consider progression to advanced disease and death to be far more inconvenient!  I’m pretty sure that my view is extreme and that you can take the tablets at slightly different times each day, but I won’t change my time.  Perhaps others can advise you better!  I can’t answer your question about temperature, but I have travelled to some pretty exotic places and haven’t yet had a problem with taking my medication with me – never been searched, but I keep a letter from my haematologist as well as the original package insert for dasatinib with me in case there are any questions.  I’m off to Baku, Azerbaijan next month and I hope that I will again not be searched!

 

5.       How long will we survive with CML?  I think the answer is that we just don’t know yet, because imatinib and the other TKIs haven’t been around long enough for a definite answer.  However, the research that I have read is that people are likely to live out their normal lifespans, i.e. to live as long, on average, as other people of the same age.  I don’t think it matters that some people are diagnosed at a higher age – “normal lifespan” simply means that you are likely to live as long as a person in his/her thirties who doesn’t have CML.  I tell everyone that I am not going to die of CML, because I truly believe this to be the case.  So far, I have seen reasonably good results with the dasatinib and I am sure that I will continue to respond well.  There is no reason to think that you wouldn’t respond well to nilotinib and I’m sure that you will see this once your blood counts improve.  My doctor says that CML is one of the “success stories” of haematology and that it is a very manageable disease – survival rates of patients recently diagnosed with CML have reached levels that are completely unprecedented compared to those suffering from other cancers!  Remember that CML is essentially a “one-trick pony” – clinicians know that it is caused by BCR-ABL which signals the white blood cells to ramp up production – so that they know what to target and how they should proceed.  We know what the enemy is and how to fight it!  Furthermore, research is continuing all the time.  Recently, I read an article about how researchers at the University of Glasgow, under the supervision of Professor Tessa Holyoake, were able to use two novel drugs to completely eradicate CML in mice.  I am 100% certain that they will find a definitive cure for CML in my lifetime (which I expect to be normal!)  So the news is good, the signs are encouraging and there are many reasons to be positive.

 

6.       I’m afraid I can’t comment on your last two questions since I live in South Africa and don’t have ulcers, but hopefully someone can advise you.

 

Good luck with adjusting to your new situation!  I hope things work out well for you.

Best wishes from Johannesburg, South Africa

Martin

I can help you on your last question ... 

Omeprazole doesn't play ball with nilotinib (Tasigna) or dasatinib (Sprycel) and others. Omeprazole tries to stay active through the day so that's a particular reason to avoid it completely. 

You could try taking something like Gaviscon, which is a much shorter acting treatment to combat stomach acid. Make sure you take it two hours after your nilotinib so it's had time to be absorbed in the acidic environment and don't take it before you take Tasigna.

If you really do have a stomach ulcer it may be caused by the Helicobacter Pylori bacteria. An Australian guy called Barry Marshall discovered this link by experimenting on himself (he couldn't get the ethics committee to agree to test on others!) and caused himself a stomach ulcer by drinking a petri disk full of that bacteria.

H. Pylori is very common, but it only causes problems in some people. You can test for H. Pylori by a blood test, so your doctor should be able to order that easily with your next bloods.

My understanding is that treatment for H. Pylori is a seven-day course of PPI (e.g. omeprazole) plus either amoxicillin 1 g and either clarithromycin 500 mg or metronidazole 400 mg - all three given twice a day.

In my case, my acid reflux problem was because of a very loose lower oesophageal sphincter, so I had a procedure called a Nissen Fundoplication done. It's worked well thus far, but sounds like it would not be appropriate in your case.

David.

Hi David

I have just started on Omeprazole for acid reflux /indigestion after trying Gaviscon to no avail. I was a wee bit concerned to read your post that it doesn't  "play ball" with TKIs. I'm on Imatinib 400mgs. Should I be taking it ( not the Imatinib but the Omeprazole?)

Best

Chrissie

Hi Chrissie,

Luckily for you, imatinib is no problem with omeprazole. (See here if you want confirmation)

To summarise, PPIs (such as omeprazole) are BAD with:

PPIs are OK with:

  • imatinib

David.

 

Many thanks for your reply!  As luck would have it my trip next week is to South Africa... just got the all-clear from my doctor today that my white blood cell count is low enough to go.  Cheers!

Hi David

Thank you very much indeed for such a quick response. I must say that after a few months of horrible gastric nastiness, just 3 days on Omprezole has totally sorted me out - and I'm not even waking up at 3.00am in pain - sleeping all night for first time since January. Such a relief.

Thanks again,

Best

Chrissie 

It really works, doesn't it? Remember that it doesn't stop the reflux, it just neutralises it so it's not acidic - but that's good enough.

When I was on omeprazole, I still found it useful to have a packet of Gaviscon / similar generic on hand when some food didn't agree with me. Different for everyone, but a very healthy looking green salad killed me! I didn't work out the exact culprit, I think it might be red onions.

I hope the omeprazole continues to do the trick for you, but if not give me a shout ... I think I am the closest thing to the resident reflux expert around here!

David.

Again., David, many thanks. I can't believe how much better I feel. I have to admit I've had the packet here for about a month since my GP prescribed them, but I kept thinking the digestive pain would go away and I really didn't want to start taking any extra meds. I tried everything natural - no good - but these little capsules are The Business!

Interesting idea about red onions (we always use these). Tomatoes and green salad weren't good but tinned toms in cooking were OK. I managed a salad y'day and was fine. Having a curry on Sat night - see how that goes!!

Best to all

One happy Chrissie

Last thing from me on this ... I imagine your doctor has prescribed you 20mg. That's the normal starting dose. If it's not working 100%, just take more (discussed with your doctor, of course). 40mg is a very normal dose.

My brother in-law had oesophageal cancer, and as a result of it needs to take PPIs. He found omeprazole not effective enough, but esomeprazole very good. Since reflux is so common, there are a load of options. Don't settle for "good enough", there will be a medicine and dose combination to totally eliminate the problem for you.

David.

 

Thank you again. David, Yes, I'm taking 20mgs and it's working just great ( at the moment). Good to now that there's a choice if I need it.

Best

Chrissie

hi there. i am newly diagnosed too (march 2016). in response to your first question i take ibuprofen for the aches and pains i experience.  don't get them all the time - perhaps on days of long walks/high exertion(i went to italy and walked around florence for a day for example) and it really helps.  my consultant says ibuprofen is fine to take. i think the us brand name is advil. 

your question 4.  i bumped my tablets by an hour when i went to italy last month because i take them at 6am and 6pm and the 6pm dose moving to 7pm might have affected dinner/fun plans. if i was dealing with a 6 hour time difference i think i would not bother though - too difficult to adjust unless you're going to be away for a good chunk of time. i quite like the 'fasting' bit though. it reminds me that i should be looking after myself. i do have alarms set, and am as rigid as i can be about the time i take the tablets. 

when travelling to italy i had no problems with customs, i have an alert card in my purse so planned on using that as an explanation if i was questioned. 

hope this helps! Tx

I was 35 when I was diagnosed in March 2015.  Male. I was on Tasigna before I had to switch to a new TKI.  Like you I lived a pretty athletic life prior to diagnosis.  I'm in the U.S as well.  When I started Tasigna my energy levels went to zero, had full body rashes, nausea, random hair loss on certain parts of my body, and the headaches... oh my god the headaches were bad.  But I eventually got over all of the side effects, except for fatigue. I was find during the day but by about 5 or 6pm every day my tank was on empty. Didn't matter if I worked out or not. Took or a nap or not. Always tapped out by dinner time.  So I just made sure I packed everything in as much as I could during the day. I could work out like normal - I'd wake up and take my first dose at 5am and then head straight to the gym.  By the end of my workout an hour had passed so I would eat breakfast and then head to work.  I'm actually in better shape now than I was prior to diagnosis.  From what I understand though its different for everyone but that most people get used to their side effects.