More frustration. I got my phone consult on 5 April.
Not my usual consultant.
Hadn’t read my record. Didn’t know about the low level positive.
Started by criticising me for not having had a recent FBC. I had. My local hospital and Clatterbridge systems don’t talk to one another. I’d collected the results on 5 March and e-mailed to my specialist nurse.
When I asked if we were going to discuss the low level PML RARA results he was taken aback. He then found them. Admitted he didn’t know how to interpret them or why the lab was reporting at three levels of test sensitivity. He’d have to check with the lab. This was new.
I pointed out that the results were in the same format as they had been for the last 20 months.I’ve had tests every 8 weeks and I insist on being sent copies.
I asked if he was going to reorder testing to confirm it was a false positive. His reply was no he wouldn’t order a bone marrow biopsy. Except follow up is bloods, BMB only if 2 consecutive positives from blood or high levels of PML RARA.
Then said, in contradiction of usual consultant, that every eight weeks was too frequent. Should be quarterly. I’m on 8 weekly as I’m monitored at distance and it was felt that was safer.
I submitted an informal complaint to the department later the same day. Asked what was going to happen about follow up/next testing. No response. On my 8 weekly schedule my next set of tests is due on Tuesday. No forms.
I’ve just escalated to a formal complaint via the Clatterbridge PALS.
I’m as certain as it’s possible to be that it is a false positive. I’ve no symptoms. I’ve a face to face with consultant on 2 August. So I’m due a test in early July. Hopefully the last one. That’ll mark 5 years follow up.
So, here I am, 7 weeks post test, 5 weeks post result. Unresolved low level positive.
I’m venting. The administration and communication is a total mess.
Oh @JohnIoM how very frustrating for you, one thing after another, but you have done the right procedure by taking a formal complaint via your hospital PALS.
Yes, I find venting on our forum does help me.
Please let us know how you get on.
Look after yourself.
I can really feel your frustration, have just seen your messages. I’m sorry to hear this is what you are experiencing. I have extreme anxiety waiting for my blood results so don’t know I would cope in your situation. Are you aware of the U.K. and worldwide APL Facebook support groups, they may be helpful but you may wish to leave it all behind when you reach the 5 year all clear mark.
Monitoring seems to be different across the U.K. and certainly different abroad.
I’m in Dorset and only have three monthly full blood count bloods done. No P-RARA blood test. If they were to show abnormalities then they would do a BM and P-RARA. They said this wousl be better for my anxiety and save unnecessary BM’s. I don’t know what’s better through worrying it’s back and they are missing something in standard bloods or worrying waiting for results and having the procedures!!!
Keep us posted your doing so well!
I lodged a formal complaint about the locum consultant who conducted the April remote consultation, and about the lack of a consistent protocol in case of low level positive.
It was successful. Clatterbridge have agreed to update their retesting protocol for low level PML RARA.
Clatterbridge have apologised for the lack of knowledge of the locum.
They’ve also explained why the test is run on three levels when the sample is blood, not aspirate. Something the locum didn’t understand, although I did.
I had a follow up blood test in May which was clear and I’ve just had my final blood and PML RARA test results - all clear - before what should be my final face to face consultation, on 2 August, before discharge from post treatment follow up. My 5 years is up.
Mixed feelings. I’ll miss the reassurance and comfort blanket of regular tests. I’ll not miss the stress of the false positives.
I know what symptoms to look out for if the unlikely happens and I relapse.
Hi @JohnIoM it seems that you got a really good outcome to your formal complaint.
Yes, mixed feelings sounds natural to me, I would be the same.
Please keep posting and really look after yourself
Dear @JohnIoM
I just wanted to post and say how glad I am that you have now been discharged from Haematology. I appreciate that it hasn’t been straight forward getting to this point but I hope that now feel reassured. I am also pleased you received an apology too.
Please know that we are all still here and take good care.
Best wishes.
Gemma
Hi @JohnIoM great that you have met with your consultant face to face and that you received an apology.
I know that when I was discharged by the consultant it brought up a mixture of emotions in me, I should have been happy but I felt abandoned, discarded, a fraud, could I still be part of our forum etc.
You are still very much part of our forum and please keep posting.
I have relapsed Acute promyelocytic leukaemia (APL) as well. Relapsed 1 yr after completing the consolidation treatment. Had to go through all the treatment again. My bone marrow and blood tests (Acute promyelocytic leukaemia (APL)/ RARA by PCR) have all been negative once again, just 1 month after treatment. I am otherwise healthy with no other health problems. I’m wondering if this leukemia just comes back eventually since there is not much info out there on relapses. Doctors want me to do a stem cell transplant. I’m not confident that is going to be a cure and not relapse again. They can’t guarantee that either. Your story is interesting because after that many years I would have assumed I was cured and now you are going through it again. We are in the 5% that have lived to tell about it.
Hello @Medtechls
I am very sorry to hear that your Acute promyelocytic leukaemia (APL) has relapsed. May I ask how you are doing? Did you have the same treatment as you were given originally?
It is really good to hear that you are back in remission. May I ask whether your Haematology team have talked to you at length about the potential stem cell transplant? Perhaps it is worth asking to speak to them about your concerns? I appreciate that it must be a daunting prospect but it is worth asking your team (your Doctor or Specialist Nurse) what they see as the treatment that can give the best outcome.
If you do need to talk through this, please give us a call: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hi @Medtechls I have responded to your other post, good luck with your dilemma and I am so glad you are receiving such good care in the USA.
Be kind to yourself
Good day from the USA! Treatment originally was Idarubicin, arsenic and ATRA with 2 months combination therapy. 2nd time twice as much Idarubicin, same arsenic and ATRA and just starting my combination therapy. They have discussed in depth about transplant but they are only doing what they would do for an Acute myeloid leukaemia (AML) patient because they have no info on Acute promyelocytic leukaemia (APL) relapse patients that have lived through a second round of treatment. I am feeling great, labs are all normal once again. They gave me no guarantees about whether a stem cell transplant would mean complete cure. After reading on here that an Acute promyelocytic leukaemia (APL) survivor relapsed after 4 years I have my doubts that I may not ever get a “cure”. Being the arsenic and ATRA seem to work for me, I’m considering taking my chances without the transplant. I have a few months before I have to make a decision. Also, insurance here will probably not cover the transplant which could leave me with a half million dollar bill. Thank you so much for your help and compassion.