Just had a devastating letter from the hospital as my husband, who is on treatment for Essential thrombocythemia (ET) has had a small bony lump on his ankle. He went to A&E yesterday as it was too painful, the GP had just fobbed him off, saying it’s muscular and to apply Ibuprofen gel. WE received a message today for an urgent consultation on Monday, as it could be secondary bone cancer. I didn’t think Essential thrombocythemia (ET) caused secondaries? I’m devastated, as was always told, Essential thrombocythemia (ET) is manageable on medication, please please advise.
Hi @Kitts.
I’m so sorry you have received this news and understand how worried you must be.
I’m glad that you don’t have to wait too long but imagine the next few days will be tough.
I have copied in the @BloodCancerUK_Nurses who will be able to give the best response.
Sending lots of love x
Hello there @Kitts, I’m so sorry to read of that letter and the worry it’s causing. I’d find it devastating too I think! Thank goodness your husband will be seen so soon.
So you’ve got some time to think about what you want to ask at the consultation, and perhaps I’d suggest note that down and find some distracting activities until Monday.
Like your husband I live with an Myeloproliferative neoplasms (MPN), mine is Polycythaemia vera (PV). From what my haematologists and other specialists have said, and what I’ve read, both are pretty rare as you likely know. In even rarer cases they can both progress / transform into Myelofibrosis (MF). In rarer cases yet the Myeloproliferative neoplasms (MPN) can progress to Acute myeloid leukaemia (AML).
I’ve not heard from any of my specialists since diagnosis that Myeloproliferative neoplasms (MPN) can cause secondary cancers. Like you, I’ve also been told that Myeloproliferative neoplasms (MPN) are manageable with treatments, and dare I say it mine seems to be 2 years since diagnosis, having daily hydroxyurea and aspirin with occasional phlebotomy.
I would say hold out hope that your husband will be tested thoroughly to rule in or out any potential further diagnoses. It’s great that he’s seeing someone so soon—many people around the forum say their waits for appointments can be longer.
If talking to the Blood Cancer UK specialist nurses might help, do consider giving them a call on 0808 2080 888, they’re really great. Looks like dear @Nichola75 has already drawn their attention to your queries.
Hope that helps a little at least. Do let us know how it goes @Kitts. Maybe have a look around the forum as there are many of us living with Myeloproliferative neoplasms (MPN).
Hello Duncan
Thank you so much for your help, my husband was diagnosed in January, he is also on asprin and hydroxyurea 2 tablets daily. He’s stable and has no others symptoms apart from feeling tired and loss of some appetite. I’m hoping that this is just a cautious follow-up to ensure it’s nothing. I will for sure keep you updated.
I am so sorry to hear this. It is understandable that you are devastated, the waiting and worrying is so difficult. Do you mind me asking who your husband is due to see on Monday? If it would be helpful to talk this through, please do not hesitant to give us a call on our nursing support line 0808 2080 888 We are open until 4pm today.
As you rightly said, Essential thrombocythemia (ET) is a chronic condition and can be managed with treatment. Sometimes, Essential thrombocythemia (ET) can progress to another type of blood cancer but this would not be secondary bone cancer. It may develop into another type of Myeloproliferative neoplasms (MPN) called myelofibrosis, or into acute myeloid leukaemia (AML). It’s rare for either of these things to happen.
We are all here for you. Please let us know how Monday goes.
Take care
Fiona (support services nurse)
Hello @Fiona_BloodCancerUK , thank you for your reply, I’m just concerned if the sho who saw him is quering secondaries due to swelling on his feet.
We are seeing the haematologist on Monday then orthopedic consultant on 8th July. If the condition has developed further to myofibrosis or leukaemia, is the treatment different and what’s the prognosis please.
Sorry for my delay in getting back to you. How did your husband get on at his follow up with the haematologist yesterday? I hope you are both doing ok. We are all here for you.
Hello @Fiona_BloodCancerUK
So sorry for the delay, haematologist doesn’t think the MRI shows anything but said to wait for the orthopedic appointment which is next week. Unfortunately the platelets have gone up slightly so has increased the hydroxyurea to 3 capsules at the weekends. 2 weekdays. He is also being referred to endoscopy for ? GI investigations as not absorbing iron, even though on ferrous sulphates and changes in bowel habits. I’ll keep you updated, just overwhelmed with everything going on.
Oh @Kitts I am not surprised that you are feeling overwhelmed, it is a lot to go through for you both.
For me I find just the medical language is a lot to take in and don’t forget that you go through the same rollercoaster of thoughts, emotions and practicalities.
Perhaps this is a space where you can say exactly how it is for you, who asks how the carer is?
Just be ever so kind to yourselves and look after yourselves.
Hi Erica
Thank you for your kind words. Thankfully the swelling has turned out to be tendinitis, they will administer steroid injection. Just awaiting the ct scan results, then we can book a much needed holiday.
Hi @Fiona_BloodCancerUK
Please please can i have some advice. My husband had abdomen CT scan on 7th July, the haematologist called today to say he would like this repeated as there is concern regarding lymph nodes? What does this indicate? He has a distended abdomen for awhile, we were initially told this was due to the hydroxyurea and ferrous sulphate tablets.
I am sorry to hear you are going through more worry and your husband needs to have a further scan. Did the haematologist give you a timeframe of when this might happen?
Whilst I am unable to comment on what this might indicate, I would be very happy to talk this through with you in more detail via our nursing support line if you would find this helpful. The number is 08082080 888 and we are open until 4pm today. Alternatively, I would suggest reaching out to your husbands specialist nurse/key worker and discussing what this might mean with them.
Hi @Fiona_BloodCancerUK
Thank you for your reply, no timescale has been given. When we contacted the nurse allocated to us he said the consultant will decide this, he really isn’t much of a help really. Quite frustrating as initially we were told it was a lymph node in the neck which was reactive, thought this could be due to an infection. I will call the blood cancer nurse today. Thank you
