Over a period of ten years my husband was subjected to being given \hydroxycarbamide without any information being given to him regarding
side effects etc and not being given a Consent form to agree to him taking them.
Life insurance companies, i.e. Legal and General will not pay out if you are given any medication with no information, and I have yet to find anyone who has a crystal
I take Hydrea. They come in boxes of 100 and every box contains or should contain a side effect leaflet. I wasn't asked to sign a consent form to take them, nor are you given a consent form when a Gp prescribes you medication. Only when I have the Flu jab and before I have the Covid Jab would I have to sign a consent form.Tina.🤗
Some NHS Trusts are issuing Consent forms and this should be done because my husband got no information whatsoever regarding Hydroxycarbamide and all the information I have learnt has been through having to drag the information out. I have lived in six months of hell because of what the NHS Trust in Burnley refused to tell me. When I asked before why he was being the tablets the answer I got was well we use them for a variety of reasons, that is hardly the answer you expect when you are looking for information.
Which Mpn did he have?
He ended up with bone marrow cancer due to being prescribed hydroxycarbamidefor ten years so it did not reduce the risk it just increased it and I am now left with having to cope with all the information that has been thrown at me due to Legal and General refusing to pay his insurance out, because he did not have a crystal ball and was never told anything about those tablets, only that they were using them to reduce platelets
Oh just read crystal ball . See what you mean ..
I am sorry you are having such difficulties
Wasn’t there an information pack in the box?
Hydroxycarbamide is a chemo drug used to treat cancer.
The law does require a consent form . I would be surprised if it varies region to region
It’s sometimes hard to get info. And can be frustrating. But I believe we need to work together with professionals , not be treated like a ‘number’.
What did you mean by Crystal ?
Hi Mostew, l didn't sign a consent form before starting Hydrea. Before Covid came along when I attended hospital, I didn't even have to sign a prescription, it was sent electronically to the hospital pharmacy for me to collect. Tina.🤗
I never signed a consent form either.
I signed a consent form for Hydroxy
after a doctor had explained its use to me and I was given a copy. I was also given a card with contact phone numbers in case I needed further information along with an emergency number. I felt very reassured - I know I am fortunate to be under the care of Guy’s and StThomas’
Your containers of Hydroxycarbamide should have had an information leaflet in, as do all medications. If it was missing from every pack, that is certainly something to take up with the pharmacy that issued the medication. If you are in the UK you don't need to sign a consent form for most medication, although there may be exceptions. May I ask which MPN your husband had?
I Agree with your entirely Jennie but i'm sure if your taking Hydrea for 10 years its highly unlikely that every pack didn't contain a leaflet. I've taken Hydrea for around 12 years and cannot remember a box not containing the information leaflet. Tina.🤗
Yes I agree, it would be extremely unlikely never to have the leaflet, but I wanted to take the original post in good faith. I do hope that she gets the answers and comfort she needs.
In the USA they dispense it in a pill bottle and you only get a leaflet if you request one to save paper/trees.
Is that with all medications? Tina.🤗
Hydrea is the only prescribed medication I took (when I lived there) personally (I now live in Ireland) they dispense meds in a zip lock bag without any leaflet but I probably could ask for one if I wanted to). I know in the States and in Ireland that some meds are dispensed in boxes that contain leaflets.
I was wrong . Looks like it can be just verbal consent not written . Sorry
Sorry to hear that your husband had such a bad reaction to hydroxycarbamide (aka hydroxyurea - HU). Unfortunately HU is a known carcinogen, though dermal and oral carcinomas are more common. It is also a known leukemogen when used long-term. mskcc.org/cancer-care/patie...
ncbi.nlm.nih.gov/books/NBK5...
Since you reference him taking it to reduce platelet levels, it would seem it was for thombocytosis, resulting either from essential thrombocythemia or polycythemia vera. When you reference him developing a bone marrow cancer, which cancer are you referring to? If it was leukemia, which form? Note - ET and PV have the intrinsic risk of progressing to Acute Myeloid Leukemia. It appears that HU can make this progression more likely when taken for more than 10 years. The debate about this has been going on for some time, but the emerging evidence seems pretty clear on this topic.
It is the responsibility of the prescriber to review what condition is being treated, what the different treatment options are, and what the risks of any treatment options are. Failing to do this is a significant breach of medical ethics. "Hydroxyurea is a highly toxic medication with a low therapeutic index." American Society of Health System Pharmacists While some people can tolerate HU and benefit from it, there are intrinsic risks to its use. Not everyone can tolerate it and some will experience significant adverse effects. That is the nature of all chemotherapies.
I am very sorry to hear that you are only learning after the fact the information you should both have had in advance of following this course of treatment. At this point, I hope you will be able to get legal advice on how to proceed, which we are ill-equipped to provide. Know that we do understand your frustration and anger over what sounds like a significant failure to provide ethical medical care. I hope you are able to achieve some form of resolution to this situation.
Thank you for your reply. You have outlined exactly what I have always stated, that the drug was prescribed without any information given to him and which should have been given to the two of us. My husband suffered from dyslexia so it was even more important that |I should have been given that information, To treat deep veined thrombosis with that tablet was irresponsible to say the least. The letter to the GP states that he had no symptoms and blood clots can be managed in other ways. He also had a Chemo card on which no diagnosis was written. But as usual if you ask questions in the UK you get fobbed off.
Your next step could be to contact your hospital's Patient Advice and Liaison Service (PALS). Write or email, giving as much information as you can, as clearly as you can. They will be able to investigate and hopefully then explain the choice of treatment for your husband. Are you absolutely sure that none of the packs of medication contained an information leaflet?
the box I have in front of me just has a pharmacy label on which tells him what to takeand is labelled handle with care
DVTs can certainly occur for some with ET/PV, but can also occur without a MPN. Did he ever get diagnosed with Essential Thrombocythemia or Polycythemia Vera? Unless he is of African decent and has Sickle Cell Anemia, I can't imagine why else he would have been prescribed HU.
As for being fobbed off, that can happen in many places. I expect is has more to do with the doctors and local health care system than where you live. We do see that here in the States in some places too.
Hope you get some form of resolution.
It started off with being treated with Warfarin for deep vein thrombosis and then they decided it was essential thrombocytemia and still he was not told anything.But at the end of the day the information should have been given to the pair of us,
more so because I have Type 1 Sugar diabetes which I have had for fifty years.
They also told him in June 2020 when he had no one with him that he had 12 to 18 months to live. How the devil he managed to drive home safely after being told that I do not know
Please do consider getting in touch with your hospital's Patient Advice and Liaison Service. You have had a dreadful experience losing your husband and they will help you to understand what happened, including what kind of bone marrow cancer your husband had. There is also the Citizens' Advice Bureau who could help you in dealing with the insurance company. We on this forum are not medically qualified to help you, but we can offer support and sympathy.
They did offer me a meeting, whether they will still stand by that I do not know. At the end of the day, they did not treat Alan properly and after what would have been thirty years on the 12th January I am struggling. Alan was not told what we both should have been told in the beginning. Coupled with the fact that there was an alterative makes it even worse. They could not even put the correct contact telephone numbers at Blackburn Hospital in the records.
If the offer of a meeting was a while ago, it could be worth getting touch again to pursue it. However, remember that hospitals are snowed under with Covid issues so things do take longer than usual. I wonder if you would also benefit from some bereavement counselling - I can see from what you say that you are really distressed. Do you have family and friends to support you? I really hope you are able to get the answers you need.
Because of the Doctor/patient relationship, they are under no under obligation to inform a third party. Their is also the issue of the Data Protection Act. Is it very sad you lost your Husband and I think you really do need to ask for that meeting, if only to get the answers you need. You say your Husband was diagnosed with Et after a DVT? Did your Husband have a Critical illness policy? Their are many people on this Forum who made a successful claim. It might be best to seek legal advice about a retrospective claim. Tina.🤗
My husband had a policy with Legal and General who sent him a paper which stated there was Critical Illness cover, when it came to claiming they would not pay out.I have all Alans medical records and despite the fact that we should both have been told, neither of us was told anything. All the information I have got is from the hospital records. We should both have been told everything about Hydroxycarbamide and we were not, and as I told Legal and General many times,
how can you tell them something when you have not been told.
All the medical records state is that he was married to a lady who had Type 1 Sugar Diabetes, which they completely ignored. The English medical profession have a very convenient way of closing the door when they get questioned, even the GP.
The bone marrow cancer came from continually giving him Hydroxycarbamide and they know that. I have lost the only person who was important to me so with the six months of hassle I have had with Legal and General, and the fact that whilst he was in hospital they would not even return my telephone calls has made everything worse.Sorry, not something I will ever get over.
There are different kinds of bone marrow cancer, do you know which one he had?
Also, has someone told you that it was caused by his medication? Hydroxycarbamide is a long established drug which has been taken by many on this forum.
Obviously you need answers but you also need time to grieve. Please try to see a counsellor or at least talk everything through with a friend or close family member. Not so easy in Covid times, but there is the phone. You really need love and support at the moment.
The level of uncaring incompetence you report is difficult to comprehend. I hope there will be some way to hold those responsible accountable. That is small consolation, but perhaps what happened to Alan can be prevented from happening to others.
You will be in thoughts and prayers,
That is why I am carrying on because the lack of answers and everything else needs to be addressed. Thank you for your replies, you obviously know what you are talking about which is a help.
I signed a consent form - the specialist nurse went through everything with me, and we signed every paragraph... plus every box I've been given holds an information leaflet, which states what the medication is for and side effects etc.
I wonder if its now changed? When I was diagnosed their was virtually no discussion, Cancer wasn't mentioned and they didn't even tell me I was Jak2 postive,I'd seen that on the top of my file about a year or 2 after being diagnosed! My Haematologist at that time wouldn't even discuss other medications with me and when I suggested to another Haemo at the same hospital I thought it was because of a cost issue,he nodded his head. I felt I couldn't communicate with the main Haemo after that and transferred hospitals where new Haemo as discussed with me taking Peg but at the moment with Covid everythings gone by the book. Tina.x🤗
Hi Tina, I started on Hydroxy in November 2019, so not too long ago. My Heam has told me he wouldn't consider Peg/Interferon for me as I've suffered from depression in the past - even though that period of depression was caused by Hyperparathyroidism, so my hormones were all over the place. K.x 
Hi, I am now on Peg/Interferon for my ET, prior to this I was on Hydroxy for 10 years. I had to sign a consent form in front of Haematologist to accept the Hydroxy treatment. Good luck.
Hi, just replying to your comment about life assurance and including holiday insurance companies, I have been honest with them and found that they were ok. Hopefully you can get some good results soon.
See if anyone in the local Cancer support centers can assist you with filling out your forms. They often times employ social workers who could advocate for you♥️
I did research on my condition so I was well aware of what I was and am taking. When I was put on Anagrelide as well, it was made extremely clear what I might expect. Initially I was told I had too many platelets and that I was going to be given hydroxi.
I just remember asking the heamo if I had got an MPN. If I hadn’t have done the research I don’t think I would have been told.
I signed a consent form, February 2020....wonder if it is the more recent diagnosed that do this? Also a McMillan nurse present at diagnosis, their detailed booklet on mpn, detailed info on hydroxy and interferon so I could make an informed choice, and given details of this forum. Seems I was well looked after compared to a lot!
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