Am i really on a chemo pill! ?

Im asking this , because family tell me im not on chemo treatment like alot of people are , because for one i dont have to spend time at hospital having it given to me ! Also side affects are not the same ! Well me personally im concerned everytime i have to swallow these capsules ... regards Holly

[Chelle_]

Your right, oral chemotherapy, in a much smaller dose than you would have at hospital and this is why you can self administer, although wash your hands before and after and make sure your the only one who touches them. You do also get similar side effects or at least some people do, if they don't believe you give them the leaflet or send them on the internet to do their research and then only accept cakes as apologies!!

I have been on it for 18 months now and I don't do too bad.....don't fret too much - the docs know what they are doing.

Good Luck xx

[Hidden in reply to Chelle_]

Thank you chelle, yes i get a bit annoyed, when people dont really know alot about our condition eh best wishes holly xx

[Hughesf in reply to Chelle_]

Hi Holy

I have been taking Hydroxy 500 now for 3 years and a prv sufferer for 4 year.

Most side effects are mild and your body will adapt and these side effects will reduce

End of the day it's all about making the most and having a good quality of life and getting into a good routine with your meds will help that happen

Be strong and move forward be positive and love the life you have been given .

Frank

[Hidden in reply to Hughesf]

Thank you Frank yes i agree , apart from pressure like headaches im okay although im a very anxious person so could be due to this ! all the best Holly

[Mazcd Partner MPNVoice]

hello Holly, Hydroxycarbamide is classed as a chemotherapy drug because it causes the death of some cells in the body, it works by interfering with the production of DNA inside blood cells, this prevents the cells from continuing to grow and mature, leading to the death of the blood cell which is then removed from the body. When you take Hydroxycarbamide the number of blood cells decreases so that your bloodstream will be less crowded and your blood will flow more freely and you will be less likely to suffer a blood clot or thrombosis, it may also help to prevent scarring or fibrosis of your bone marrow in some but not all cases.

So you may not be receiving an aggressive dose of chemotherapy as many people are for other, life threatening cancers, but you are indeed taking a mild dose of chemotherapy every day, and the side effects will vary from person to person, as with any other medication, even simple things like paracetamol can cause different side effects in different people.

I fully understand your concerns about taking the tablets, I went through the same fears and doubts when I had to start taking them, but they have made a huge different to my quality of life, so for me it's worth taking them.

Maz x

[Hidden in reply to Mazcd]

Thank you Maz for clalifying for me , i do try and think this is doing me good and helping me feel a bit better about this condition . best wishes to you Holly x

[harleydavidson in reply to Hidden]

Hi Holly. I get the same from my kids, as their dad, my ex husband told them that a form of cancer isn't the same as cancer!!! Any way brave lady, well done you, I wish you well. Mel x

[Superwoman]

Hi Holly,

Maz is right, I must admit I have been so much better health wise since being on Hydroxycarbamide, not had so many illnesses, before I was diagnosed I was beginning to think that I was a bit of a hypochondriac , been on it just over three years now and it has not been to bad.

Jean

[Hidden]

Hi Jean, how long was you taking it before you noticed a difference i guess it doesnt work right away ! regards Holly

[Kerri2]

It seems to act remarkably fast, at least in my case. I was having blood draws monthly when I started and was down within a normal range within 3 mos. Once they get you stable then they might look at reducing the dosage.

[Hidden in reply to Kerri2]

Thank you Kerri yes still early days for me x

[Helpatlast]

Hi Holly yes initial months taking HU can be confusing and a challenge - but stick with it, it's well worth side effects lessen as your body adjusts and also your bloods will show good results after a time on the programme. I have taken it for ten years and it was a lifesaver and as Maz said it means your life can be led more safely. Also unfortunately yes people do not always understand, they are used to hearing of intravenous chemo treatment for the aggressive cancers - but actually much chemo these days is via oral tablets/capsules - several friends and family have had both bowel and breast cancer and the majority of their chemo was by oral tablets! So it's common use. Fortunately our treatment is low grade in comparison - but it does have its challenges - I have found showing friends sites such as this and lovely comments such as Maz who is well in the know helps people see that what you are saying is correct - people just need a bit of education on modern treatments and it helps get people on side and give you some support. All the best girl keep going you will feel benefit in due course. Jill

[Hidden]

bless you Jill , yes you have hit the nail on the head , people sadly do not even understand these rare blood cancers mpn , but yes i thank God im being treated with kinder treatment than most people with other cancers , wish you well regards Holly x

[linds]

Hi Holly,

The way I look at taking our tablets is this - how jolly lucky we are to be given this treatment.

So many people around the world would give their eye teeth to have the opportunity for some help with their condition. I take Rux twice a day for my MF and stared for ages and ages at the packet before taking the first one, but, my quality of life has so improved and I feel cared for and safe. Give your family Maz's reply to read and as Chelle says, apologies in cake! By the way I have been taking Rux for over two years now.

Holly, keep taking the pills and have cheer in your heart. We are the lucky ones.

[digijools]

Hi everyone!

Can you list some specific ways your quality of life has improved?

Thanks and bless you all,

J.

[steve_m]

Before my flu jab my GP asked are you on chemo? I replied yes, hydroxy. Her response was that's not chemo. Annoying isn't it?

[Hidden in reply to steve_m]

Strange isnt it ! If you look up about the Hydroxy , it says chemo pill. well unless someone has a tumour .thats cancer so all very confusing to some folks , i always got the impression , its the cancer cells that are the problem .