New here? Feel free to introduce yourself here 👋

[Duncan]

Hey there @YouAreAMiracle, I can’t offer any helpful advice regarding your cousin’s Acute myeloid leukaemia (AML) diagnosis or Great Ormand Street, but I just wanted to say how lovely it is that you care so much for your cousin. Just wanted to second what dear @Erica said by hoping that you have folks making sure you are also okay during this? I imagine it’s pretty stressful for all involved.

Have a search around the forum using keywords relating to your queries and you’ll likely find others who have first-hand experiences similar to you and your cousin.

Do keep posting and remember to seek support for yourself too as this can’t be any fun for you and your family.

[YouAreAMiracle]

Thank you to @Nichola75 @Duncan @Erica !!!

[kubastarzynski]

Hello, I’m new here. I got diagnosed with Acute promyelocytic leukaemia (APL) in middle of February this year. I’m currently finishing my first consolidation cycle on arsenic trioxide and atra, three more to go. I’m happy to share my experiences and looking to talk to others with Acute promyelocytic leukaemia (APL). Feel free to send me a message or whatever (I don’t know how this forum works yet). Thanks! Kuba

[Nichola75]

Hi @kubastarzynski and a big welcome to the forum.
It’s such a great place to share experiences so I’m sure your contributions will be really valued by other forum members.
It sounds like diagnosis and treatment all happened really quickly for you. How are you doing?

[kubastarzynski]

Thank you. I was an inpatient in St Barts hospital in London. Was there for 40 days, on idarubicin which was brutal. I’m an outpatient now and feeling completely normal which is great, feeling lucky in a weird way. Having a second bone marrow in two weeks time so we’ll see (first one after the induction cycle came back clear)

[Nichola75]

Wow - that was a long stay and sounds like it was a tough ride. I’m glad you are feeling more like yourself now. Looking forward to learning more about you

[Marinam]

Hi everyone,

My name is Heather, I´m in my mid fifties and live in rural South Norfolk. I was diagnosed with Chronic myeloid leukaemia just before Christmas last year, following a routine blood test for something entirely different. Fortunately for me I was at treatable chronic stage and I started Imatinib immediately following a bone marrow biopsy. Although Christmas was hijacked by side effects, mainly bone pain, cramps, fatigue and nausea. By New Year, I´d begun to feel an improvement and to see a way through. Managed to get back to full time work (I´m self employed so that had been a big worry over Christmas) in January and I´ve been adapting steadily since then with the support of both the local hospital and local surgery. I´ve been checking into the Blood Cancer forum regularly since diagnosis and have to say that this has been such a support to me in addition to the advice of the Chronic myeloid leukaemia nurses. I felt isolated initially so the forum has been a life line. So thank you for all the work in providing the site for blood cancer patients and their families and thank you to all those who share their stories. I felt very shaky at the start of this journey, it came as a shock but I realise now that I am very fortunate compared to many others, that said I also feel heard as a new patient with real concerns trying to adapt to the situation as best I can.

[Jonny]

Hi, My name is John, I am 66 Y.O. I was diagnosed with low Platelets in March 2023. Following Gastroscopy and then Bone Marrow Biopsy in September 2023 I was diagnosed with Myelodysplastic syndrome (MDS). I am now having regular blood tests and appointments with Haematologist at Sheffield Hallamshire Hospital. My bloods, although low, are stable at the moment and the consultant advised there is no need to embark on an immediate allogenic stem cell transplant at the moment. I am fairly fit for my age, consider myself to be very active and walk 6 to 8 miles every day.

[Erica]

Hi @Marinam a great big welcome to you feeling that you could now post on our forum.
I read your story and I was also diagnoses just before Christmas, I felt in a bubble with the world celebrating around me.
I was also diagnosed out of the blue whilst being treated for something else.
I have Chronic lymphocytic leukaemia (CLL) and that was 20 yrs ago.
I was in shock for a long time and felt very isolated.
It took me time but perhaps at medical checks realise it is a 2 way process and I find a pleasantly assertive manner helps and make sure that you ask all your questions and receive responses.
Thanks for raising the financial impact as it is often not spoken about.
I really look forward to hearing more about you.
Really look after and be very kind to yourself

[Erica]

Hi @Jonny welcome to our forum and I am so glad that you have posted.
Fitness and being very active sometimes seems irrelevant, blood cancers seem to know no boundaries.
I am not a medical person, but I think it helps.
It sounds as if you and on ‘watch and wait’ or ‘active monitoring’ and I believe lots of aspects are taken into account in deciding on the way forward.
I would say keep active and fit, although I am not a medical person.
I look forward to hearing more about you and please do keep posting

[Marinam]

Many thanks Erica, your words mean a lot and I really appreciated your reply!
All the best to you and I am sure I´ll be using the forum a lot in the years to come.

[Denny]

Hi, my name is Denise, I’m 73 and have recently been diagnosed with polycythemia Vera. I feel overwhelmed as I ha ve refused chemotherapy but have been told there is no other treatment.
I live on my own and feel really scared. I also have AF and am on the waiting list for a 2nd ablation. I’ve recently had pneumonia which has left me very weak and have suddenly found that I cannot walk very far without feeling breathless and wobbly. I do feel breathless all the time but don’t know which illness has caused this. I am really scared of being on my own.

[clickinhistory]

@Denny hi and welcome to the forum.
Also welcome to the club no one asks to join, the Polycythaemia vera (PV) club.
I got diagnosed after a car crash last summer and have just started on some IKEA inspired brand name chemo tablets last week. So far so good.
Polycythaemia vera (PV) is a cancer that mimics and plays hide and seek with it’s symptoms, but breathlessness is a common one for us and a big bug bear for all us sufferers.
Yes there is no cure, that sounds like the song, “Yes, we have no bananas”, and all we can do is slow it down and treat the symptoms. Aspirin and this tablet is a start. Trying to eat as healthy and in a low iron sort of way is also helpful, personally, trying out flax seed ground up, as a way to help reduce all sort of of things (BBC Radio 4 - Just One Thing - with Michael Mosley, Try Flax Seeds BBC radio 4).
Being on your own is a scary place, so I would suggest reading as much as you can from this website rather than Google, talk to any friends, as my nurse said, we look well most of the time and don’t have lumps and bumps to give visual clues to others, learn to be selfish about your mind and body rather than let Polycythaemia vera (PV) do it for you.
For a rare cancer, there is a few of us on here, @Rammie18 and @Duncan (our tofu overseas correspondent for Polycythaemia vera (PV)) are full of information, just to name a few. You are no longer alone as you have found others here.
Also don’t be afraid to reach out to the @BloodCancerUK-SupportTeam here for moral and practical support.
Learning to dance with cancer, your cancer is a journey of self discovery and listening to your own body.
So turn the music up in your head phones and dance away

[Denny]

Thank you for your reply.
The drug they want me to go on is Hydroxycarbamide. The side effects are not good and I don’t feel I can cope with them living on my own. When speaking with the nurse about the side effects, she explained that I would be given a voucher towards a wig!!! And there was a 24hr phone line to ring if I started to feel ill. It’s all just too overwhelming. I feel like I want to crawl into a hole and be left alone.
Aspirin hasn’t been mentioned, maybe because I take an anticoagulant for my heart.
I asked about a venesection as it’s the first thing to be mentioned in the blood cancer book given to me, but was told it wouldn’t do any good, so why is it in the book!!

[Heidi_BloodCancerUK]

Hello @Denny,
I am so sorry to read all of the struggles and worries you are experiencing. There is so much I want to say and write to you, but it would take me a long time on this Forum - would you feel comfortable ringing our Supportline? I think it might be helpful to have a chat with you over the phone. Our line is open until 4pm today: 0808 2080 888 it’s free and confidential.
I have a few questions around what you have written, particularly regarding your nurse talking with you about side effects and offering you a wig voucher - I have never known anyone taking Hydroxycarbomide need a wig. Some people’s hair thins, but I have never known anyone loose all their hair. Do you mind me asking if the nurse was a chemotherapy nurse or a Haematology nurse specialist? Depending on the hospital, some patients have their treatment discussion with a chemotherapy nurse who may not know all of the Haematology treatment side effects, so give more general information.
Side effects from Hydroxycarbomide tend to be fatigue (most people have fatigue with their blood cancer to start with), which over time can ease. Some people experience itching or skin changes or slight upset stomachs. On the whole hydroxycarbomide is well tolerated.
I’m sure others on this Forum will describe their side effects.
In regards to venesection, this is a great way to reduce some patient’s red cell count, it’s quick and requires no medication. However, by taking off approx 500ml of someone’s blood volume this can put the heart under strain to cope with that sudden loss (as well as all the other organs in the body). I’m guessing that your Haematologist has said this ‘wouldn’t do any good’ is actually meaning it would do more harm to you. You are correct that you aren’t offered Aspirin as you are on a different anti-coagulant. Do let your Cardiology team know that you have been diagnosed with Polycythaemia vera (PV).
There are other treatments for Polycythaemia vera (PV), but these are usually offered when Hydroxycarbomide has been given first and is unsuitable or no longer helps the patient’s Polycythaemia vera (PV).
I feel there is so much more to discuss, and it’s no wonder you feel overwhelmed and want to be left alone. Polycythaemia vera (PV) is manageable if you access the right support and help. It seems you need to have more time with your Haematologist or a specialist nurse to discuss your individual circumstances and concerns.
Do get back in touch if we can support you.
Kind regards, Heidi.

[Rammie18]

Hi Denise @Denny

Can totally empathise with some of your situation.

I was diagnosed with Polycythaemia vera (PV) in August 2020 and then went on to have an AF in Nov 2021 and then another in Oct 2023. First thing I’ve ever had to go into and stay in hospital for as prior to that I was pretty healthy one would say.

@clickinhistory and @Heidi_BloodCancerUK have given sound advice and support which I can really only echo.

When I was diagnosed I was just on venesections and aspirin which to say you’ve been diagnosed with a form of cancer doesn’t really fit the rhetoric/stereotype of treating something fatal and extremely serious. However speaking to others you quickly learn that this is the norm and a way of initially seeing how you body is working before knowing the next step. There is no timeframe given to this initial step which in itself can make you anxious and bring up a lot of different emotions and fear.

Regarding treatment there are a couple of choices. Some are tried and tested and some are more suited based on an individual or if previous treatments have failed or quality of life is too much effected.

I initially was on Interferon injections which I felt I got on with quite well. It’s relatively new and so far helps control the necessary levels but its long term lasting is still unknown.

I was recommended switching from this to hydroxycarbamide soon after my heart attack.

Like you I was extremely reluctant and hesitant of starting this as knowing it was a form of chemo really brought home that I had cancer and the baggage it brings.

I spoke to my Haemotologist about my concerns and though he was extremely understanding as I read through the potential side effects and my general concerns he kinda just said: “I am offering you with my vast knowledge and experience advice on what I believe is best to help you fight and live as long as possible. All your fears, worries and concerns have been brought up by what’s written and what “some” people have experienced. These are what people read into more as you sometimes what to know the worse possible outcome so they can prepare themselves in case they are put in the same position to agree with themselves as though they have been labelled as unlucky to have such a rare condition that you will also now continue the luckless fate of experiencing the worse side effects or end results.

With medication/treatment it based on science /testing/time/analysis but also trial and error.
We are all on the same journey heading towards the same final location but some getting there quicker, some slower, some with lighter luggage, some having a heavier load and some first time travellers and some experienced with plenty of highs and lows.
I guess it’s a case of the unknown of whether taking a step may take you in any direction but so can standing still.

Sorry for digressing…

I took hydroxy for about 6months, my hair started to thin but nothing incredibly noticeable and something that unfortunately comes of age but it didn’t fall out but thin extremely gradual. The fatigue was there at times but this too can happen depending on what heart meds you’re on but also is a common symptom of Polycythaemia vera (PV). I personally believe the fatigue comes from the lack of iron but forcing yourself into a daily routine and maybe managing and assessing your do’s and dont’s also help.

Hydroxycarbamide is the most tried and tested course of treatment and most fast acting out of the ones available. Yes it comes with side effects but everyone is different and have unique experiences.

I think all your concerns are valid as I’d be a hypocrite to say otherwise but I can honestly say in my experience , the hair thinning is not permanent if you do experience it. Mine has grown back pretty thick. I also didn’t experience any sickness or show any signs that I was on chemo.

It’s also worth noting that other treatments are only available if hydroxycarbamide has not been effective or not tolerated.

Please feel free to contact any of us should you have any questions or post on here as we are all an amazing bunch with tonnes of advice and support to offer in accompanying you getting through this.

[Rammie18]

Here are some potentially helpful and insightful videos

MPN Voice patients’ virtual forum 27 Jul 23, focus on PV

I’m trying to find a really helpful one but I think it was posted the Polycythaemia vera (PV) posse post.

I’ll try and locate it for you

[Nichola75]

Hi @Denny and a big welcome to the forum.
I have read all of the replies so far and I’m so glad there are people who can share their experiences with you.
I hope you feel you can give the helpline a call as @Heidi_BloodCancerUK suggested. I think it would be really helpful to talk things through.
Please keep us updated on how you are doing

[Denny]

Thank you so much for your replies, it makes me feel better knowing that I’m not on my own.
I didn’t read your reply Heidi until after 4pm, hence why I haven’t rang you.
And thank you Rammie for your honest reply.
I will come on here regularly as I do feel it will help me.

[clickinhistory]

@Denny re all the side effects, think of a nice nurse and doc surrounded by lawyer types, they know it can do you good, but because some one somewhere had or might have a side effect, they are afraid of being sued.
A doctor once described it has if you had to fill out a risk assessment form every time you left your bed, no one would get out of bed. Life is a series of risks, medicine is one where you have to decide on the possibility against the probability of it doing some good. Do I drink green tea because it is good for me, but add my three spoons of sugar to make it drinkable?
Take your time and ask those who know and then make your choices, though do wonder at the choices of wigs @Erica and @Duncan will pick if given a voucher