My mother was diagnosed yesterday with MPN (ET)
She has been told that the only option is ‘big’ tablets . She has stomach problems and cannot even tolerate paracetamol. She asked can they be crushed - no , she has asked if they do smaller tablets that she could take more of - no.
She is 83, recently widowed and worrying she cannot tolerate the big tablets. Does anyone else have any advice?
A lot of people on here take hydroxycarbamide, which may be what is being suggested. It comes in capsules that some find difficult to swallow, but they can be broken into a small glass of water to take.
I can't think what 'big tablets' might mean otherwise.
Andy
Hi Andy, thanks for your reply. She has discussed this with the consultant and specialist nurse and has been told that the tablet should not be broken down and that no smaller doses exist.
So far, this discussion is all advice on hydroxycarbamide. Do you know what exactly is being advised by your haematologist?
Andy
Actually there are alternatives to 500mg hydroxyurea (hydroxycarbamide)(HU) capsules. One option is to opt for the lower dose versions of HU like Droxia or Siklos. Some people do break the capsules open and dissolve in water, but not all sources recommend this as HU is a toxin. Contact with skin must be avoided. Great care must be taken in how it is handled, especially if the capsule is opened. This is especially true when a caregiver is handling the medication.oralchemoedsheets.com/sheet...
drugs.com/monograph/hydroxy...
Do note the GI issues are a common adverse effect with HU. Her history of stomach problems is a consideration that needs to be taken into account.
online.epocrates.com/drugs/...
The good news is that there are other options to treat ET. The other first-line treatment option for ET is PEGylated Interferon. Anagrelide is another treatment option. Do note that all of these treatment options have potential adverse effects, including GI issues.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
All of the MPN treatment options have a risk/benefit profile that must be considered in deciding how to treat. Most hematologists do not have the KSAs to provide optimal MPN care due to their rarity. It is very important to review treatment options with a MPN Specialist. Here is a list.
All of the above is not to say whether your Mother should or should not take HU. That is a decision that needs to made after reviewing each of the treatment options and then making an informed choice. Many people do use HU successfully, but not all can. We are fortunate that we now have more than one choice to treat ET.
Thank you. These are all options that were not put to her. She is 83, it is so difficult to know what is the best option.
Unfortunately it is all too common to only give the patient one treatment option without explaining all of the choices. This saves the doctor time having to explain things at the expense of patient's right to full informed consent. In addition, some health systems will prefer HU to PEG because it is so much cheaper. Some of the more serious risks of HU are associated with long-term use. At age 83, some health care systems will not be concerned about long-term risks.
The decision about which treatment approach to use is not black-and-white. The decision needs to be based on the patient's treatment goals, risk tolerance, and preferences for how to treat. It is a nuanced multi-factorial decision that the patent needs to make. The core of this process is that doctors educate, consult and advise. Patents decide. Doctors write orders but do not give them.
Suggest reviewing all of the treatment options with a MPN specialist. It helps to head into the conversation with a base of knowledge about ET and the treatment options. Depending on your mother's current status, she may need assistance with advocacy. I do this for my Mother as her Medical POA. The truth is that many people are far too passive in how they manage their medical care. Assertive patients receive higher quality care. Passive patients do not.
After reviewing all of the options, your Mother will be able to make an informed choice about her care. It is up to her (or her advocate) to actively and assertively make this decision.
All the best to you and your Mother.
Many thanks for taking the time to reply. Thanks for the advice, I will certainly advocate for her and make sure I attend appointments with her from now on.
Does your mother have any symptoms?
She is 83 and has been experiencing fatigue and weakness that was unexplained and after a year, this has been discovered.
I take Lansoprazole early in the morning to help with stomach issues. I am on Anagrelide, I take two capsules with my breakfast and the other two with my evening meal, so they’re not going into an empty stomach. Her stomach issues need to be discussed with the haematologist or specialist nurse. Hope all goes well.
Thanks for your reply
It says can be dissolved in water in leaflet in my box .....
I didn’t find the tablets big. I wonder if they are 1000 not 500mg. Either way someone says you can break them up so hopefully your mum will manage.
Hello,I’m sorry you find yourself here, but welcome.
You do not say which tablets your mother has been prescribed and with a recent bereavement, you must be very anxious about her. I take enteric aspirin and they are very tiny and slow release. If she has been prescribed Hydroxycarbamide, there are alternatives. It is possible to have an injection of pegylated Interferon every two weeks and that is less toxic than Hydroxy. A lot of doctors won’t prescribe it though as it is expensive. Also I am not a haematologist, but I have had ET Jak2+ for six years. I am in my seventies. I have stopped taking Hydroxy in the last six months as I can no longer tolerate the side effects.
Having said that, many people tolerate it without any side effects.
I do hope your mother can find a drug that makes her feel a little better. Do ask if your haematologist is an MPN specialist. If not, there are lists for each country and it really would be advisable to consult with one.
I wish you both well.
Hugs,
Marcia
Hello, I am a similar age to your mother and have a problem swallowing anything but very small tablets When I was prescribed Hydroxy 3 years ago, I was told I could open the capsule VERY CAREFULLY and add it to liquid or honey. I was advised to keep spoons and anything else involved with administration of this drug separate and away fom other use..I dissolved capsules in warm orange juice and this worked well. The information leaflet also explaims this option.It worked very well for me ,
I am now on a different drug which is in small tablet form.
I hope your mother’s problem is easily sorted.
All the best
Margaret
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