Hi. First post. Was diagnosed with APL 5 years ago. 11 weeks in patient treatment then 7 months of flying from the Isle of Man to Liverpool twice a week for my ATO ATRA treatment. Went into remission in May 2018 ( the lab lost my February 2018 samples ).
Until covid I was having bone marrow biopsies in Liverpool every 13 weeks. Then moved to blood every 8 weeks, taken at Nobles IoM Hospital and sent by courier to Liverpool.
This wasn’t just for the convenience of Clatterbridge but also for me as returning Manx residents had to do 14 days quarantine.
December 2021 I had a low level positive PML RARA result. Tests repeated and came back negative. I’ve had two negatives in February and April. My June results returned a positive. Still low.
I’ve a consultation in Liverpool on 3rd August. Probably have a BMB.
I’m the only person ever diagnosed with APL on the Island. The remission rate is good. I’ve never spoken to anyone who has had refractory APL or who has relapsed.
A great big welcome to our forum @JohnIoM and I am glad you have found us and you are now not alone you are part of our forum family.
I was struck by how lonely, tiring and stressful it must have been for you travelling back and forth from the Isle of Man to Liverpool twice a week.
You’ve got an appointment in Liverpool next week and probably a BMB.
Do ask all your fears, thoughts, questions and practicalities etc.
I find the ‘pleasantly assertive’ approach works for me.
When I was first diagnosed I was the only person on my GP’s surgery books that had blood cancer, it felt to me that I was the only person in the world !!!
We might have many different blood cancers on here, but I often find we share similar fears, thoughts, emotions and practicalities
Please let us know how you get on on the 3rd.
Look after yourself.
I’ve been heavily involved in the APL Facebook groups for the last 5 years. Unfortunately they have an American bias and questions are often sidetracked by requests for prayers or statement that belief in a deity will see you through. Each to their own, and understandable perhaps when many don’t have insurance for the ATO/ATRA.
Surprisingly the long day trips weren’t lonely. Great camaraderie between IoM patients coming and going on our NHS patient transfers. And there were 4 other Merseyside/Lancashire/Cheshire/North Wales patient with the same diagnosis and on the same protocol.
As for tiring/stressful I’m not sure my journey was any worse, and often shorter, than some others coming in to central Liverpool from the furthest corners of the Royal Liverpool/Clatterbridge catchment area.
I’m really looking to chat about the practicalities and experience of treatment for refractory/relapsed with people who’ve experienced it. It’s a minority within a minority, only 120 of us APLers a year and the relapse rate is low.
I’ve got my list of questions for the consultant and specialist nurse. I won’t get results from the BMB for 3-4 weeks. And even if it’s positive it’s caught early stage. My initial admission was with sepsis with few functioning blood cells.
A warm welcome to this forum @JohnIoM - hopefully someone with similar experiences will respond to your post, but I also wanted to let you know of this thread started by someone with APL, Hello New diagnosis of APL Leukemia - Recent diagnosis - Blood Cancer UK Forum
and also, here are all the threads which talk about relapse, just in case you want to join any,
Search results for ‘RELAPSE’ - Blood Cancer UK Forum
We’re only a phone call away on 0808 2080 888 if there’s anything we can do to support you.
Hi @JohnIoM I have been thinking of you and I wondered how you are doing now and how your 3 Aug consultation went.
Look after yourself
I’m good. Thanks for asking.
New consultant. Hadn’t read my records. Didn’t realise I live a 4 hour boat journey and one hour drive from the hospital. ( or a 45 minute flight, 2 hour check in and £10 taxi fare, each way, departing at 7am, returning 8pm). Wouldn’t order a BMB unless the second sample, taken last week, was also positive for PML RARA. If it was I should “pop in”. Test results are 4-6 weeks because of covid, summer holidays, staffing levels.
He criticised the lab for running the tests at too sensitive a level. It’s the standard level I, and my cohort of fellow APL’ers, have been on for ages.
There were a few of us receiving inpatient treatment for APL at the same time in 2017. We formed a close bond and are still in contact. We are on the same follow up test regime. Between us over 120 tests in 4 years. The only one with any positives has been me - twice in 7 months.
All my ordinary bloods are within range. I was criticised for not having them done since August 2021. Pointed out they were done every 8 weeks along with the PML RARA testing, and the results manually forwarded to Clatterbridge. IoM NHS computer and Clatterbridge computer don’t talk to each other, so he couldn’t see them, they were stored elsewhere in the records.
Doesn’t inspire confidence, does it?
My response. I’m escaping to Spain, for 6 weeks, from tomorrow.
Oh @JohnIoM all I shall say is to have an absolutely wonderful time for the next 6 weeks in Spain !!!
Please keep posting when you get back
Hello there @JohnIoM, I am so sorry to hear that you have had such a stressful time with your monitoring and the positive test. Hoping that the most recent bone marrow results are reported swiftly and show remission. May I ask, where the positive PML RARA tests peripheral blood or bone marrow aspirate?
I would be happy to discuss your questions regarding relapse treatments but I am glad you have a list ready for the Haematology team when you see them. Very positive news that you have a normal Full Blood Count.
Take care and enjoy the trip to Spain.
All my testing for the last 30 months has been peripheral bloods, at 8 week intervals.
It’s not as sensitive as a BMB, which is why i asked for a BMB. It’s supposed to be definitive.
I shall just put it to the back of my mind, enjoy Spain, and wait for the results from the latest samples in the first two weeks of September.
Dear @JohnIoM , please do enjoy your Spanish trip and I would be happy to speak to you on your return if that would help. Take care Gemma
Thanks. I’m having 5 days in Bulgaria before returning to Spain. I’ve got a phone consultation with my haematologist on Wednesday. The follow up sample from 3/8 has also returned a positive PML-RARA result. Planning my return for a bone marrow biopsy.
Gosh you are having a busy time @JohnIoM. I think doing things that you enjoy is so important
Please let us know how your phone consultation goes on Wednesday.
Don’t forget a consultation is a two way process so make sure you ask all your questions and understand all the replies. Sometimes I find medics speak a foreign language to me.
I hope you have your bone marrow biopsy soon, some people do not need pain relief but if you do please ask for it.
Look after yourself and enjoy Bulgaria it is a place I have never been to.
Not much he can say or me ask until the biopsy result. I’ve been chatting to the specialist nurse. Earliest they can fit in the BMB is 12/9 and I’m passing through Liverpool on my way home the following week. Unless consultant wants it sooner it seems sensible to do it then rather than fly from Spain and then go back to get the car. I’m travelling by ferry from Bilbao on 17/9.
You really are a globetrotter @JohnIoM and 12/9 is only 2 weeks away.
Yes, I find the specialist nurse is a really good practical contact.
Hello @JohnIoM, glad you have been talking to your Specialist Nurse. I am sorry to hear the August sample was also PML_RARA positive which means another Bone Marrow test for you. If you do need any support at any time please do send me a message. Kind regards Gemma
BMB booked for 19/9 on my way home through Liverpool. Family arrived today for 10 days. Quite happy to wait and see results at end September.
I’m envious of your friendship group @JohnIoM as I’ve only ever done appointments on my own. I can’t offer any of the medical answers that you’re looking for but you know we’re all here to chat to if you need it. Good choice with Bulgaria. I had a great time when I went there.
How are you doing @JohnIoM ?
I’m on the ferry home from Liverpool. It’s been a good break.
Spent last two days in Liverpool.
Yesterday the specialist nurse practitioner failed to extract any bone marrow aspirate despite 3 attempts. Right bum cheek like a pin cushion.
Was fitted in today for an assault on my left buttock. After one fail they called in the consultant. He got a sample.
Results in two weeks.
Hi @JohnIoM I know we do not know each other and this is rather a personal question but how is your buttocks feeling now?
Be kind to yourself