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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. Thank you all so much for your support, it helped.

But Holy Cow. She has really good insurance since my dad was retired military. So she only pays a copay. But she just got the invoice for her meds and found out the cost of the drug. $!0,000.00 for a month's supply? Seriously? How is that not f*in criminal?
I do not have insurance, can't get it because of the cost, and am in the coverage gap. I have no means to pay for any medical conditions that will come up in my life, at least for the immediate future. If this were me instead of her, there is no way I would ever have access to this treatment.
She lives on a thousand dollars a month Social Security and has no assets to sell. What does someone like that do that does not have Tricare?
What is the cost of this med in other countries?
Having to pay kind of money just to stay alive alive is just immoral.
What do people who do not have money do that need this med? Are there programs that cover it?

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.

Because of a number of factors affecting my full time work situation, I fall in that gap, and cannot afford the insurance rates. There are few resources available to someone in that position, save for an emergency room visit with a very high bill, or sliding scale basic clinics that are limited in the services they are able to provide. Some people are able to pay out of pocket, but many cannot. In some cases, people can get on programs with the drug companies to get their meds, if they are available. But that does not cover the cost of doctor bills, specialists, tests and so on.

There is a very loud segment of political opposition here in the US and there are many politicians who want to legally repeal the ACA although I don't think they will be able to do much. How do you, for instance, take coverage away from people without dire political consequences? I don't think their numbers are in the majority, but they are very adamant. A lot of conservatives oppose it on ideological grounds and want the government out of a system they feel should be private. It's the luxury of people who have money and coverage already, to be able to argue the politics of it. Politicians have great insurance. Some others? Not so much. If your kid needs brain surgery, you just want the best care and you shouldn't have to die because you don't have means. Medical bills are a leading cause of bankruptcy here.

I have a friend who was able to get coverage under the ACA for her and her daughter at a very affordable rate. So that is encouraging,

Having experienced firsthand being unable to afford care, I would give anything to have a system like Britain, or Canada, or France. Sure, there are problems to be worked out, but other countries have solved this larger issue. To me it seems like common sense but the political reality here is such that we will probably not see anything similar.

I don't want to start a political debate here (the political arguments in the US are vitriolic), just was so shocked to see the obscene price of this medication. Really, that should be criminal. it just makes me so angry. It's a day later and I woke up furious at this. 96,000 a year? (price edited after clarification) And that doesn't even take into account doctor fees, cost of testing, monitoring, and any other treatments.) Seriously? But thankfully, for people who have insurance, hopefully it covers.

A friend of mine's mother has MS, advancing pretty quickly, and she was taking some kind of treatment or injection or something that was once or twice a month and the cost,was like $2000.00 each time. She was in a drug study or program to get the drug at no cost, but apparently they stopped the study, so she no longer has access to treatment and does not have that kind of money. She has always worked, but had to stop working because of her illness, and she lives in the state that I do and is in the coverage gap. Right now they are trying to figure out what to do that will allow her to continue treatments, but as far as I'm aware they have not found a solution yet.

>>EDIT<< We weren't clear on the number of tablets shipped, so we clarified things and called a local pharmacy for the retail. All in all, for her 30 day supply (two 150 mg tablets a day), it was 7928.19 (don't forget that .19 cents). That comes to 95,138.00 per year (and .19 cents). Actually there was a little leeway there. The lady on the phone almost choked giving me the price.