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Mom will be starting Tasigna and Allipurinol. Scared to daeath after reading the pamphlet?

Mom has been diagnosed with CML and is starting on these this week. She tends to be pretty sensitive to meds and we are really concerned.
Rubber gloves when she uses the bathroom? Seriously?
What's in this awful stuff?
From what I know, her white blood cell count has been going up along with some other things in her blood test, which alerted the docs to do tests. S he did a bone marrow biopsy and he diagnosed her. She is in the first stages and does not have an enlarged spleen yet.

What can she expect? Has anyone taken these meds?
Thanks in advance.

Hi DJ, i'm sorry for your mom but there are some good news: cml is highly treatable form of leukemia. more than 90% of the patients in the chronic phase (initial phase) will have normal/near normal lifespans. the fact of your mother did not have an enlarged spleen is very good. she'll probably be fine. I take tasigna too and have few side effects like a little fatigue and acne. tasigna is a very good drug and you can expect great results and a good tolerance.

P.S.: i never had rubber gloves when i went to the bathroom :)

Hi DJ,
I assume you're based in the US? - being told to 'wear rubber gloves' seems a little 'over the top' to say the least. The information leaflet your mum may have been given sounds like it might be more generally for people who are receiving high dose chemotherapy drugs and/or transplant patients. Rubber gloves (to my knowledge) have never been a requirement- not even for transplant patients.....

I have read the leaflets that come with nilotinib (Tasigna) and I am very sure that rubber gloves are not mentioned.

Your mum seems like she has been diagnosed early and is in the first stages ('chronic phase') so is very likely respond to this kind of targeted therapy (Tyrosine Kinase Inhibitors- TKIs for short) so try not to be too worried. CML is now very much a disease that you live with- as long as you have the correct drug and it is taken as prescribed at the same time slot/s every day.
If you need further advice as she goes on in her treatment then please do not hesitate to ask on this forum.

Where is your mum being treated?

Sandy

Thank you, this was very helpful to ease her peace of mind. I'm not sure which med pamphlet mentioned the rubber gloves, but one of them did.
She is going to start the day after Thanksgiving.
Hopefully she will be able to tolerate the med.

It's driving her crazy because she's trying to figure out a way to take it since the pills are 12 hours apart, and she has to not eat two hours before and one hour after. So she ends up either having to skip breakfast or her evening snack (she can't sleep on an empty stomach). In addition she's supposed to take a full glass of water with it which will have her in and out of the bathroom all night.

Hello DJ,

Just to clarify, you mentioned your mom is starting the tablets after thanksgiving. Is she taking hydroxurea now? When i was diagnosed (in the USA) i was put on hydrox and that does need handling with some care - washing hands after touching should be enough. As for tasigna, there are no handling issues with it at all. The tablets are capsule type and i find them very easy to swallow and carry around with me.

For timings, i find 10AM, 10PM works well for me. Your mom simply needs to find a routine which fits her day; I take mine like clockwork now - over 4 years for me.

Water - your mom should drink at least 4-6oz with the tablets. However, the more important aspect of is to drink water throughout the day. I had to increase my water consumption to help reduce the side effects. I find staying hydrated is really important and if i don't i'm more susceptible to headaches and fatigue.

Good luck and enjoy thanksgiving - i have fond memories of my thanksgiving dinner 4 weeks after my diagnosis.

Chris

Thank you Chris,
She hasn't started on any other leukemia drugs, this will be her first one. She is going to start tomorrow.
She's trying to time it with other drugs and supplements she takes - for instance, blood pressure, thyroid and such all have different instructions for taking.
She will have to change her thyroid med from morning to before dinner. Etc.
I'm glad to hear you had a good Tgiving. She timed it to start the day after because she is thinking she won't ever be able to eat again without becoming nauseous. Now the doc prescribed an anti nausea drug, promethazine, which listed the side effect of nausea and vomiting!

The first 1-2 weeks on tasigna can be a little rough, with some nausea and headaches being the most common side effect. Things will calm down though; I work 50+ hours a week with minimal side effects. I have tired days and so will your mom, particularly in the early days.

Best wishes and please ask any questions you may have.

Chris

Just wanted to post an update. About a week now on the Tasignia and she seems to be tolerating it pretty well, thank goodness. 

DJ,
The US has an entirely different health care system the we do here in UK and Europe. Your outline of your mum's (and your own) position makes for pretty stark reading and I can see why you are outraged. Currently in the UK, our National Health System is in danger of privatisation -as reflected in the US system- and many of us are horrified by that prospect. However, this does not help you or your mum who have to deal with the system you have - I am sure there is a programme to help US citizens who struggle to pay the high costs of health care.
The best organisation for you to contact about the options open to your mum for financial assistance is the National CML Society. They will advise you on your mums specific case.....see link to their Patient Assistance Programme page below:

'We can provide assistance to you or your family member with the application process for a variety of Patient Assistance Programs, particularly those related to CML. Through our established contacts, we can help expedite the handling of your requests. Please contact us at 877-431-2573 if we can be of assistance to you.'

http://www.nationalcmlsociety.org/what-we-do/patient-assistance-program-...

Hope this helps,
Sandy

SHe is a bit spacey and drugged on this. Is that normal and does it get better?

DJ, this is probably quite a normal reaction- remember there will be quite a few white cells that are being knocked out so it will take some time for her body to adjust to that never mind the effects of nilotinib - it will get better, just give it some time.
Sandy

Thank you (and thank you also for taking the time to reply when you work a 50+ hour week!)
She hasn't had any nausea or headaches, thankfully. We did Thanksgiving a little early out of concerns she would not be able to ear. But actually, on this med she's eating more.

Mostly she feels drugged. She is normally shaky on her feet and a little dizzy and this makes it worse. She's had a lot of fatigue but the blood test showed that her red blood cell count had dropped below normal so maybe that's why.

What was weird was that the first week her white blood cells dropped way down - not to normal, but a bunch of points. Then the next week, they were up again. From what I understand that shouldn't happen so we're not sure what to think.

Anyway, thanks, I did let her know the drugged feeling should get better.

Thank you Sandy, I am grateful she is covered. But we were just so shocked to see the price. I was not aware they were looking at privatizing your system - I hope for your sake they don't. Many here in the US are able to get insurance who coudld't before with our recent Affordable Care Act ("Obamacare") coverage, although many who fall below the income guidelines in certain states where governors rejected federal funds, for political reasons, that would have covered those people, are in a coverage gap.