Right, where Monday’s failed attempt took place, was sore overnight and all day Tuesday. Left, where Tuesday’s success was, was a bit sore. Seating on the ferry was uncomfortable. Night in my own bed has improved matters.
I know from previous experience that I’ve hard bones. I’ve had multiple failed attempts historically. Indeed, at diagnosis, I had to be sampled via my sternum.
Watching that puts a whole different perspective on BMB.
Hi John, have been thinking of you. Have you received your BM results?
I just wanted to let you know that I had a positive peripheral APML sample in august to which o had to have an emergency BM aspirate, which came back all clear. Praying your sample came back all clear too. All the best! Lucy xx
Good luck with the bone marrow aspirate results @JohnIoM . I know exactly how unpleasant they are. The first time I had one the doctor lied and told me it wouldn’t hurt!
Still waiting for the full results.
Still not got the full results. It’s a bit frustrating.
The partial results, not the PML RARA testing, goes
“Ongoing morphological remission” ( that’s good )
“obvious population of abnormal promyelocytes or blasts” ( not so sure about that )
Hi @JohnIoM definitely a question for whoever ordered your tests medical wording is a foreign language to me.
Look after yourself
Hi John,
Sorry to hear about your bone marrow experience. Number 4 for me was awful as they hit my sciatic nerve. It took about three weeks to feel better!
Have you asked for clarification of the results? I have been thinking of you.
I’m waiting the results of bone marrow number 5, last one after treatment finished a couple of months ago.
Do you still get tired and low on energy?
Take care.
I have a phone consultation on 19/10. Results are still not with me in full. That’s unusual. Normally only 2 weeks.
I want the full results including PML RARA. That will assist me in knowing what to ask the consultant.
I’ve lost count with BMB. It’s approaching 30 attempts and 15 samples over 5 years.
I get frustrated being treated like a mushroom. Kept in the dark. Delayed disclosure has historically meant an anomalous result and the specialist nurse is waiting to talk to the consultant before sending them on.
Oh @JohnIoM that waiting game again and it brings all those familiar anxieties, thoughts and feelings.
Please let us know how you get on on the 19th.
Look after yourself
Four weeks ago I posted about two consecutive and very painful days of tests at Clatterbridge Cancer Centre Liverpool.
Since being diagnosed with Leukaemia 5 years ago, and finishing chemo 4 years ago, I’ve been having testing every 8 weeks to check I haven’t relapsed and that the blood cancer hasn’t come back.
The blood samples I gave in November 2021, June and August 2022 all showed low level positives. False positives aren’t unheard of. To ensure I was ok the consultant ordered more invasive bone marrow biopsy testing as it gives gold standard definitive results.
Today I had a phone consult, a day early, with my haemo oncologist. All bar one of the results are in. All negative. So I can breathe a sigh of relief, I’m back on track.
As long as the outstanding result is good I’m now on track for discharge from follow up clinic and testing after three more samples, November, January, March.
Thanks for all the support.
Hi @JohnIoM I bet you are breathing a sigh of relief, good news.
Please celebrate, you really deserve it, I celebrate everything at every opportunity.
Look after yourself.
Really gald to hear this @JohnIoM. Sorry you’ve been through all this and hope you can relax a little.
Do take care
Gemma
John I am so pleased to hear this. Congratulations! This is also reassuring news for myself as I’ve had 2 positive PML samples this year but clear marrow!
Enjoy your amazing news xx
So pleased to read this. I’m still waiting my last BM result, it’s 5 weeks tomorrow since I had it. First look was ok but I need the morphological one until I can breathe a sigh of relief.
I’m hoping your last one comes back negative for you and you can continue on the monitoring journey and enjoy life in between!
Well, here I am. Back again. My early December PML-RARA sampling gave no detectable residual disease results. My end February sampling has just reported with a low level positive.
That’s four positives in 15 months. The previous 3 were decided to be false positives after follow up and further testing with BMB.
I know when it’s going to be a positive, reporting is delayed. Getting a copy is like pulling teeth.
The consultant will order tests again. He will say the testing is too sensitive. I chat with my cohort. Same tests, same sensitivity, none of them have had false positives.
I wonder if it’s because my samples are taken remotely from my treatment centre and then couriered over? Or whether it’s because we moved from testing at Guys ( never a false positive ) to HODS ( where I’ve had a 40% positive rate ).
I’m nearly 5 years out. Getting ready to be discharged from the clinic. As long as I don’t have any more positive results. Then another positive comes along.
I’m frustrated and venting. Seriously considering self discharging from follow up, no more tests.
Oh @JohnIoM , this sound so frustrating for you and you can always have a vent on here.
I know my blood tests fluctuate and I think that there are a number of reasons why.
But if the testing is really sensitive and yours are borderline I suppose it really makes a difference.
Is self discharging, however tempting at the moment, appropriate in the longer term.
I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses
The Blood Cancer UK support line is also there for you on 0808 888 2080
Take lots of care
Hello @JohnIoM
Thank you for posting and am really sorry to hear that you have received a low level positive result again. I can only imagine how frustrating this is particularly as you are so close to being discharged. I know in the past you have been able to discuss this with you Nurse Specialist? It may be worth calling them and explaining the frustration and concern you rightly have and request some time with you Haematologist to discuss? Have the team suggested another bone marrow test as yet?
To my knowledge the fact that your samples are tested in a laboratory that requires couriering should not alter the result. May I ask whether you have a paired blood sample sent too or is it just the bone marrow sample?
I am very happy to discuss this with you if that would help and I am sorry you are going trough this again: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Thanks Erica,
at remission, and end of treatment, we were told 3 year follow up, however it was changed with covid, and moved from quarterly bone marrow biopsy to bimonthly blood, to 5 years follow up. My 5 years is up in August.
The frustration is threefold.
I spend half my life waiting for the next set of results. It’s just a niggle, but one that increases a bit when results are delayed and then again when there is low level PML-RARA result and I have to do a follow up test.
They had the results on 17 March, but delayed notification. I still wouldn’t have had them unless I’d chased. Why they can’t tell me and just auto send the forms for repeat tests I don’t know. That would shorten time in suspense.
I’ve now got a consultant phone call next week. He will order new tests. Forms will be e.mailed. Easter means a few days delay. So samples around 11 April and another 2-4 weeks wait.
I suppose what i find difficult is the poor communication. The fact they don’t have an automatic retest protocol to deal with low level positives doesn’t help.
The tests are run on blood, not BMB. Only get BMB if there are two consecutive positives from blood.
One of the practical difficulties of being stuck on a rock in the middle of the sea is logistics and timing.
Samples to go to England can’t be done on Friday as they won’t arrive until Monday. Lab don’t like that.
This winter the airport has been having ILS replaced. Multiple flight disruptions and cancellations, of both the freight plane and the mail plane.
I try to rationalise but the glaring, and no doubt coincidental, difference between the others and me is that they drop in to Clatterbridge for sampling and face to face results. They don’t get false positives and get reported/seen quickly.
One of the joys of Island life.
Hi @JohnIoM I really do understand your frustrations and I don’t think it is just about your island living.
Yes, awaiting and chasing is a way of life for me too.
I remember when I was first diagnosed my GP saying you have to take responsibly for your condition. Perhaps that is what she meant.
I do ensure different departments know my conditions, medications, allergy etc and that includes optician, dentist and audiology etc. as well
Hey that’s life.
Take care and be kind to yourself especially at anxious, frustrating times and please do keep posting