Recently diagnosed

Recent diagnosis
1

Good morning everyone!
I have just turned 78. I live alone with no family close to hand.
Have spinal stenosis and arthritis and am housebound unless I can use my car and mobility scooter.
Yes! It did come as a shock even though my late father suffered Polycythaemia vera (PV).
Because I suffered at least one symptom including nose bleeds and itching skin I have advised my doctor times innumerable that my dad had Polycythaemia vera (PV) in the 60’s and 70’s and what his symptoms were, the worst one being horrendous itchy skin after bathing!! Like 1000000 fleas crawling over you! I was prescribed creams and antihistamines. Little better than useless!

I’m currently undergoing venesection - so far had two, two weeks apart. Next one is 14/11 after seeing consultant when I’m told she will
Discuss what treatment can be offered.
Chemo was mentioned and this puts the fear of God into me because of being alone and being sick terrifies me. Am just venting my concerns in this at the moment, until I get my head sorted!! :exploding_head:
Any support will be welcome …….
Sandra x

5 Likes
2

Hi Sandra @Kezi

Firstly welcome to the forum and thank you for posting.

I too have Polycythemia Vera and I can total empathise how you are feeling regarding itchiness and regarding the thought of chemo. You certainly aren’t alone with these feeling and what you’ve written and are going through totally resonates.

It’s really important you speak honestly about how you’re feeling to your medical team if not your clinical nurse.

Doctors/specialists will always use their knowledge and what has been proven to be most effective but everyone is different. There are other forms of treatment to hydroxycarbamide like interferon but each have their pros and cons. Stay away from Google is a must. The form of chemo for Polycythaemia vera (PV) is a lot different to most people thoughts of chemo and a know of more people who’ve coped and fears and anxiety was eased once they started.

Regarding the itchiness, there are a lot of things people have tried to alleviate this. It’s important to note that a lot of medical staff won’t be concerned bout the itchiness as it’s a lesser of the evils with Polycythaemia vera (PV).

Personally what works for me is a cheeky iron infusion (which is counter productive to what we have) but really does help. It maybe worth checking your iron levels. Others try creams and antihistamines - it’s all about trial and error.

But again speak to your medical team and talk them through emphasising how it’s all effecting you.

I’m happy to answer any questions or concerns regarding treatment and Polycythaemia vera (PV) should you have any! :slight_smile:

4 Likes
3

Thank you Rammie 18
Sandra x

2 Likes
4

Hi @Kezi,
I hope you’re doing okay? I’m really pleased that you have posted and I’m sure you will be given great support from others going through similar.
I can already see that Rammie has offered some really brilliant support and i simply wanted to add that should you feel you need to speak with anyone about this, our helpline is very much here for you at anytime- Blood cancer information and support by phone and email | Blood Cancer UK.

I also understand that the mention of treatment can feel really frightening due to the unknown side effects and what it will mean for you. Often chemotherapy for Polycythaemia vera (PV) will be milder in form and therefore side effects can often be really well managed. In case it’s useful to you i have linked here to our information around treatments- Polycythaemia vera (PV) treatment | Blood Cancer UK.

Take care of yourself, Lauran

2 Likes
5

Hi @Kezi a great big welcome and and now you are part of our forum family, so you are never alone.
I have another blood cancer but I can really relate to you, I am 73yrs old and I I have scoliosis of the spine and osteoporosis and I have fractured and compressed several lower vertebrae.
Personally I think anything that is medically unknown to me is really scary.
This forum is a great place for you to vent your concerns it took me a very long while to get my head a bit sorted.
I maintain that since my diagnosis my thoughts and feelings have been on high alert and like being on a rollercoaster
@Rammie18 and @LauranBloodCancerUK have given great responses which I will not repeat apart from the Blood Cancer UK support line is there for you on 0808 2080 888, I have found them all to be lovely
Please do keep posting as I really look forward to hearing more about you.
Be kind to yourself

6

Thank you Lauren
I am going through the responses I have received so that I can absorb the various advices.
It’s very confusing at present, but I will get my head round it eventually. At 78 so much information takes some absorbing!! :stuck_out_tongue_winking_eye:
Sandra @Kezi

1 Like
7

Dear Rammie18
You mention iron infusion helping. (Even though counter productive!) I’m willing to try anything so that I can once again enjoy a shower!!! Does it really - REALLY - REALLY help? And how do I take this infusion, what dose? How do I check my iron levels?

So many questions, but I am sitting on the side of my bed at present, my arms itching enough to drive me insane, having taken 2 antihistamines 10 minutes ago! UGH!

Getting my head round things is going to take a while and I shall certainly be making a list of questions for my consultant when I see her at RSH on 14/11.

Thank you for responding so quickly and looking forward to giving an iron infusion a try, hopefully aiding my sanity!

Sandra @Kezi

1 Like
8

@Kezi

It’s a bit controversial as I was anaemic before my Polycythaemia vera (PV) diagnosis and often people are diagnosed with anaemia after diagnosis.

If you look up the symptoms of low iron they include itching and craving of non food substances. Many people crave paper/card/ice and even dust (which is a bit eww) but thankfully mine is fennel seeds.

I now don’t itch all the time but I know when I do it’s due to having low iron.

My iron level and ferratin level is in low single digits when it should be triple digits. The issue with increasing your iron is that it boosts your hct level which is the one that often determines whether you have a venesection. Equally, when you have a venesection it lowers/removes iron from your body so you can see how counterproductive it is.

You can check your iron by doing a blood test, sometimes it’s automatically done when you have a full blood count but you can request this and it’s easily done.

If it is low iron it’s best to discuss this along with the itching with your med team or your gp. Tablets don’t work for me hence the infusion and you need to be incredibly low in iron to get a transfusion else it can be done via tablets.

It sounds gross but I’ve had to stop showering everyday and have flannel washes inbetween. Which has helped I think. And so far (touchwood) no complaints of smell :s

Another forum poster also had extreme itching which was massively effecting her quality of life and mental health. What helped her massively was taking ruxolitinib.

This was only available in Scotland and wales and only just been approved in England but only when Hydroxycarbamide doesn’t work (you need to be on it for a few months)

Again, totally empathise with you and the itching I know too well how awful it is.

The iron was what it was for me and though you can buy iron supplements I would definitely recommend discussing this with your med team first!

If you haven’t got a haematology appointment soon give your gp a call and get them to pass on a blood form with your iron levels checked.

As a Polycythaemia vera (PV) patient you should also have the capability of walking in for your blood test without going through swiftqueue or you can get them to label your blood test as urgent so you don’t have to wait days/weeks like most people are experiencing.

Hope this is the fix you need

2 Likes
9

@Kezi

I also take antihistamines one in the morning and one in the evening.

It’s very hit and miss which ones work.

Fexofenadine seem to be the industrial antihistamine that is available on prescription but is now available over the counter as alleava.

I take cetirizine hydrochloride which is relatively cheap and take it regardless whether I’m itching or not.

Like with any medication it may take days/weeks to kick in so as annoying as it sounds patience and persistence is key. Which really does help when you’re in agony now.

It’s a shame that the itching is often dismissed as it’s not as important as stopping your blood clotting. But I know it’s no way to continue and is massively debilitating when trying to get through the day.

I think what works for eczema patients maybe something to look into. Heat or cold packs to distract you. Soaked bandages lose clothing etc.

I’m just spitballing here as I know when it hits you wanna give anything a go to make it go away

1 Like