I was diagnosed with CML in May and am on 400mcg Imatinib. My latest FBC showed I was anaemic and separately through my GP, found I was low in zinc and selenium too.
I’ve got the usual symptoms of anaemia: dizziness, blurred vision, heart palpitations, etc. I’m annoyed it wasn’t picked up before now, it was my querying the results that it came to light.
My CML nurse referred me for an IV infusion and that’s taking a while to organise.
Hi @PoppyDarling I cannot help with my experiences but perhaps talk to your medical team before making a decision to go privately as it can be tricky being in the NHS system, then going privately and then getting back into NHS system.
As for cost, if you do decide to go privately, it might be worth ringing around providers.
If you would like to talk to the Blood Cancer UK support line is there for you and I will copy your post to the Blood Cancer UK nurse advisors just in case they can add anything. The @BloodCancerUK_Nurses
Please look after yourself with your symptoms and please do let us know how you get on
Thank you. I look forward to receiving any advice. I understand what you’re saying about the NHS v private healthcare but I always ensure my haemo team are copied into procedures and outcomes. I’m just so frustrated with the NHS administration.
Hello Janice
I’m very sorry to hear about your frustration & I can completely relate. I had awful anaemia which was firstly treated with several blood transfusions. I then was given an iron infusion & after that my anaemia seemed to right itself. An iron infusion helps for you to start producing your own iron over a period of time. I cannot comment on costs to have it privately but as @Erica mentioned it may be worth calling providers to enquire costs. It may also be helpful to call your consultants secretary to enquire why it’s taking so long to organise& if he/she can help to move things on. I hope this helps & please take good care of yourself& let us know how you get on
Hi, yes, very helpful. I am just frustrated at my local NHS admin team and looking for alternatives. The advice from yourself has been informative and helps me to understand a little more about the pitfalls of our disease.
I can understand your frustration @PoppyDarling , the NHS can be very slow at getting around to things, especially at the moment with the Covid backlog. I think the others have given you sound advice and obviously it’s entirely your decision if you go private. Hope things get sorted out for you soon.
Thank you for posting on the Forum and letting us know about your CML and anaemia.
I am sorry to read that you are having symptoms and the added frustrations of having to wait for the infusion to be organised.
May I ask if you have called your CML specialist nurse to let them know you still don’t have an appointment?
Often the logistics of what needs to happen behind the scenes is never told to patients, and this can most certainly cause frustration.
From experience of recently working in the NHS and trying to organise iron infusions it can be tricky and take time.
Our hospital had only one day unit that did the infusions, if they were short staffed or busy with other treatments, this caused more delays. Unfortunately, it wasn’t unusual for patients to be waiting at least 4 weeks for their infusion.
As a CNS I would send a referral to the day unit, but I wouldn’t have any control or feedback for the unit booking the patients in, so it might be that your nurse does not know you still haven’t had the infusion.
Often iron infusions are given as two doses, a week apart, so the difficulty is finding two appointment slots. The infusions last about an hour to two hours, depending on your dose (and your veins!).
If you don’t manage to get your infusion dates soon and you are feeling more symptomatic, certainly ring and let your Nurse know. You may need further blood tests taking and if your counts have dropped further, this may speed up your referral too.
If you would like more advice or information, please call our support line: 0808 2080 888 we would be happy to talk to you.
My iron level are shockingly low my record is trace amounts but since being diagnosed it’s been 3
My med team are really reluctant with iron infusions as it’s counter productive with my blood cancer treatment but your body needs iron and the symptoms of low iron go hand in hand with my blood cancer symptoms.
I had an infusion a few weeks back and exactly like @Heidi_BloodCancerUK said. The dept that does the iron infusion is the same as where they give patients chemo as it’s often done in the combined day unit.
I understand and appreciate the wait with the back log and staff shortages but that still doesn’t help you, and as mentioned speak to your medical team about the possibility of getting a cancellation or if it’s possible to wait it out in the waiting room (not ideal)
It often is a quick routine task and you definitely feel better soon after taking one.
It’s like going to the gym and having your favourite chocolate bar after. It may be a step back but oooh does it feel better.
I’ve never gone private but there’s great advice here and your gp should be a point of contact with any medicinal needs you have and should be complimenting anything your hospital team are providing.
I’m not sure how referrals to a less busy hospital work but it could be a thing.
Hi Janice.
Sorry to hear about things. I too had iron deficient anemia diagnosed in June this year. I had two infusions which were 3 weeks apart. First one was around mid June and lasted about half an hour 2nd three weeks later.
It takes anything up to 3 months to really kick in. These infusions were on the NHS. Hope this information helps.
Hi. That’s very helpful, thank you. I’ve got my first infusion tomorrow after creating a bit of fuss at my NHS hospital. Some say it takes a couple of weeks to feel better, some more. We’ll see. J
Hi Janice - this is really good to hear! Thanks for letting us know. Sorry to hear the path to getting the infusion wasn’t straightforward, but happy that you’ve seen such an improvement in your symptoms since having it. One of the great things about sharing experiences on the forum is knowing when and how to ‘create a fuss’!
I was feeling good last week but over the past two days I’m fatigued again. I’m having my bloods and six month BCR ABL test next week and then an appointment to discuss going onto Bosutinib.
I saw a dermatologist and a dermatologist/haematologist today about my eye oedema. They said they hadn’t seen any oedema from people on Bosutinib. However, the downside is that they see more skin complaints.
