Chemo card

[stevenjust]

In a recent answer to my post it was mentioned someone carried a chemo card, I have never heard of such a thing. Is this necessary and if so do the hospitals supply them?

Thanks

Steven.

[Mazcd Partner MPNVoice]

Hi Steven, I am not sure but maybe they were referring to our ID medical alert cards mpdvoice.org.uk/living-with... if you would like one please email me at [e-mail] with your name and address and I will post one to you. Kind regards, Maz.

[beetle in reply to Mazcd]

Hi Maz

If not all authorities are providing sufficient information about the risks of Chemotherapy maybe mpdvoice could provide a chemo alert card that could be adapted no matter where you live?

[Klys in reply to Mazcd]

Hi maz may inhale one of these cards please?

[Klys in reply to Mazcd]

Hi maz just read it is a mpd medical card mpn voice how does one get one? I looked on their site but no mention of it?

[Mazcd Partner MPNVoice in reply to Klys]

Hello Klys, the information about how to get one of the cards is on our website mpnvoice.org.uk/living-with..., if you could send me your postal address I can put one in the post for you, please send your address by email to me at [e-mail] or by private message from this forum. Kind regards, Maz

[Rinty]

Hi Stephen it was me I think that mentioned that, the card Maz is referring to is different, the card I mentioned is bright pink and was handed to me by my nurse when I commenced treatment, the information on the card reads as follows;- CHEMOTHERAPY ALERT CARD! The complications of Cheomotherapy are potentially life threatening, they include NEUTROPENIC SEPSIS which is a medical emergency and must be treated urgenty - on the back of the card it reads;- ALWAYS CARRY THIS CARD WITH YOU AND SHOW IT TO ANYONE WHO TREATS YOU! If You:-

HAVE A TEMPERATURE OF 38 OR ABOVE

FEEL SHIVERY OR FLU LIKE

FEEL GENERALLY UNWELL

YOU MUST CONTACT THE 24-HOUR HELPLINE IMMEDIATLY

There is also space to add your own details, ie Name,Hospital No. DOB, Regimen (dosage & name of therapy) & on the front the Hospital details (in my case Guys & St Thomas's) and emergancy telephone numbers.

I hope that helps, YES IT IS VERY VERY SCARY, the wording on the card, but also the therapy is toxic and therefore must be taken seriously. Good luck and hope you have a better day, am dreading next week as I commence chemotherapy once again, lets hope my body tolerates it this time as I have to say my counts did come down quite considerably last time. Best Wishes A.

[light in reply to Rinty]

I am Guy's & St Thomas Hosp. patient and I did not receive this Chemotherapy Alert Card. I wonder why? This is very interesting. This is very important for all of to have it with us, just in case. I am going to ask next time I am in for my appointment. I need to write it down so I won't forget.

Best wishes to you all.

[rubyrubyruby]

I have had a quick google about this card and it seems only certain health authorities give these cards out!

[AlRow]

When I went to the Pharmacy department to collect my Chemotherapy prescription, the Pharmacist asked me if I had been given the information pack and alert card. When I said that I had not he told me to return to the Unit and he also rang them to make sure that I had this information. The Specialist Nuses were very concerned that I had not received the pack. I believe this to be very important as many of us do not always present as being ill to people who do not know us!

[beetle]

Having recently had a neutrophil count of 0.6 that was ignored - in a cancer hospital!!!! - I am interested in this card. I have never been offered one although I have moved into several different authorities since diagnosis. I have just googled neutropenic sepsis and got quite a shock. my neutrophil count is often hovering around the 1.0 level but nobody has ever really warned me about neutropenic sepsis in terms that caused me to sit up and take note of what to look out for. I shall be more vigilant in future though! I see NICE guidelines are for IV antibiotics within one hour of neutropenic sepsis admission to hosp. I have learned that you sometimes have to be your own advocate to get the required treatment. Education and information are vital. Thank you for bringing this subject up. There doesn't appear to be a nationwide chemo card - maybe these could even be produced by one of the cancer charities if some health authorities are not bothering?

[Rinty in reply to beetle]

Yes I know what you mean about hospital treatment, I was looked upon in A&E as being some crazy person, as clearly I looked reasonably well, even though I felt I might actually be dying !! It wasn't until I refused to take a seat & continued to call for help, flashing my card about I might add, that a nurse reluctantly took my temp which was 41 degrees, I then told them they had to give an antibiotic drip IMMEDIATELY, I

Litterally was begging them !! It turns out it was not only an adverse reaction to chemo (500mg daily hydroxycarbamide - 6 weeks worth) but I also allegedly had the flu! My results were much what I expected, only my platelets were raised. What I am trying to say is that the problem doesn't seem to lay with the person administering, (although of course it should)!! I think staff are just so ridiculously overworked and probably underpaid, they have so much to do and remember, there are always going to be errors, AND THIS IS WHY IT IS SO IMPORTANT - TO BE YOUR OWN SPECIALIST and seek out what you should have and let those around you know, encase of an Emergancy! Lets also not forget MPD's are incredibly rare, and in most hospitals they still do not understand them ! Good luck out there, I must say, so glad I am not alone. Xxxx

[stevenjust]

I have never heard of neutropenic sepsis? What is it am I or all of us at risk, I just think of my illness as something that's not that serious as that's what I have been told by drs as long as I take treatment. I'm still unsure if I have 'cancer' but presume I haven't as I've been told I'm going to live a normal life. it's all a bit confusing lol.x

[rubyrubyruby in reply to stevenjust]

Hi. I really am not sure that you are being given all the information by your specialist!

If you have an MPD it is a cancer. It is not on the same level as other cancers, but it is still a cancer. I was told it is a slow-growing blood cancer and given a booklet from Leukaemia and Lymphoma research.

Yes, we could all lead normal lives BUT there could be a lot of potential hurdles along the way too! The meds may help to manage the condition but they too come with warnings for long term use.

I recently was successful in a critical illness claim. That was because my ET is classified as a cancer. Insurance companies don't like to give money away without a fight but there was no fight at all. In my mind that tells you just how serious our condition is.

[Rinty in reply to stevenjust]

Hi Steven, just a quickie, have you seen this new booklet thats available? it is the most informative to date that I have found?

leukaemiacare.org.uk/assets...

Best Wishesxx

[Hidden]

As soon as I started Hydroxy I was given a little red booklet entitled 'Your chemotherapy record' and it clearly states please read this booklet carefully and carry it with you at all times during your treatment. Inside is a label with my name, address, nhs number and date of birth. It also shows my diagnosis and treatment. The Consultant uses the booklet at every visit to record details of my treatment and my blood results. I am on my 4th book as he is quite strict about you giving him your booklet at the start of the consultation and being updated. The back of the book lists emergency contact numbers, It tells you what to look out for if you have an infection and to contact them if your temperature is raised above 38C or two consecutive readings of 37.5 C. I just assumed everyone got one of these!!!!!!

[Mazcd Partner MPNVoice]

Yes definitely different to our MPD alert cards, I was given a card by the pharmacist at my hospital in Derbyshire which sounds similar to those above, it does say that if I have a temperature, feel unwell etc etc then I should call the 24 hr number and speak to one of the haematology nurses, I think this is probably another case of having to ask whether or not your haematology department offers a similar service and if you can have the details. The card does not have space to put my name and other details, it is literally just contact details for the haematology nurses at the hospital, and it also does not 'alert' anyone to the fact that I am taking Hydroxycarbamide, which is why I always have my MPD Voice medical alert card with me, so it seems they are different depending on where you live. Maz.

[PVPVPV]

Practice is bound to vary a bit between regions but I am really surprised that there isnt a standard on this, seeing as we have a national health service.

[Jennie_Barnes]

When I started on hydroxycarbamide last month I had an adverse reaction to it, I got flu and fainted at work. I only work round the corner from the christie so my boss drove me straight there as he knew that would be the best place for me. My platelets had dropped from 900 to 11 in a week and my nutrophils where at 0.0!! ie i became neutropenic. I was given a platelet transfusion straight away and started on GCSF hormone injections to increase my neutrophils.

It's scary to think that i haven't ever been given one of these cards before and if i hadnt have been at work and no one knew my situation god knows what would have happened!

[StuEP]

Hi

I read this post with interest. I live in Sheffield and have not been told about this potential problem nor been offered a card.

Yesterday I had a consult with a new hematologist. From what I have been told he's supposed to be a top guy in the field. I mentioned this discussion and not only had he not heard of these cards but his reaction was that he thought it was excessive (his own words).

I'm still new to this forum but the distinct impression that I am getting from reading about other people's experiences and from my own is that our consultants seem to be generally very unaware of practices in other areas of the country and the realities of living with an MPD.

I find this situation quite disturbing as we are not supposed to be treated as diseases but as people and yet the quality of life aspect of our illnesses seems to have been overlooked to a great extent. That includes feeling reassured that we are all receiving consistent, good quality information, which is clearly not the case in relation to this card.

Sorry if this seems like a rant. I don't believe in complaining, I believe in action and I have been mulling over more and more what steps we, the suffers, can take to highlight the quality of life aspects of our illness to the hematologist and get them to sit up and take note of what is happening. And that's why I am bringing up this point.

Be well.

Stu