Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Just to give an update as I got my scan results and I’ve had a complete metabolic response and was negative on the scan. I was also told my admittance date for my Allo is 6th June so thankfully not giving me long to ponder over this. I’m strangely looking forward to getting it done and hopefully moving on although I appreciate its going to get very tough.
The appointments have all been booked for my heart & lung tests and I’ve also already visited my dentists to have my teeth checked over again. It’s strange but I was doing all this exactly a year ago before my Auto never imagining I would be doing it all again so soon.
I’m due to meet the team in Plymouth on Friday to talk through it a bit more but I was wondering is there anyone on here who has had an Allo for Hodgkin’s with the exception of Moomys daughter? I was wondering what the condition therapy would be as I’ve yet to personally meet anyone else with Hodgkin’s let alone anyone who’s had an Allo for it.
I will let you know how my meeting goes.
Hi Mark markyflem, I had a quick look using the ‘Search in Group’ tool above and found a few hits in the first few pages of posts - give it a go.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Mark, you could try tagging the folks who have posted most recently. The screen shot below shoes how to do it. Once you get the persons Forum name up in the blue box hit the box and that makes a tag and an email goes to the person - good luck.
Thank you as always for your help. I will hopefully be able to locate someone who is still using the forum following an Allo. I did find a couple from a while ago but it wasn’t positive reading so best leave them ones.
As with all Allo threads there are good and less good across all the blood cancers, so read them through before you tag.
Always around to help out.
its not common these days to have an allo for HL, but I know Lacie (can’t remember her user name on here) had an allo as first choice rather than an auto and a year on is doing ok, her annual scan was clear (I’m in touch still on a different forum) after she posted with scanxiety and ‘does it ever improve?’! but doesn’t post that often now, think she’s getting on with her life!
The Christie had only one person after daughter having an allo for HL in about 5 years. So yes, it’s relatively unusual, especially when you realise that hospital is a specialist cancer hospital, with the biggest trials unit in the UK. I guess they see a pretty large number of relapsed and refractory patients.
if it’s any help, many allo’s follow similar paths, even drug-wise, so there are common factors.
Yes it certainly is not common. My consultant told me I’m the first person in his 8 years he’s had go to Allo for Hodgkin’s so it’s unusual to get to this point.
I think I’m just getting nervous and although I’m fully aware of the risks, i just want to hear as many positive stories like your daughters as possible and focus on them.
Just got my latest blood results and I’m neutropenic at 0.1 down from 0.5 on Friday. My last chemo of ESHAP was over 2 weeks ago and now I’m getting worried things are going wrong again. All my other counts are going up so I was wondering if anyone else has had this.
Hi Mark...... so I had a different brand of Lymphoma and treatments and the longer things went on the longer I was Neutropenic following treatments and my Neuts were also very erratic and in reality your conditioning is going to kill your immune system off completely anyway.
neuts can be rather erratic, try not to overthink, but do keep a regular check on temperature in case of infection. Your team will have told you when to phone in for advice.
So pleased to read you've had a CR! Woohoo!
With regards to your neuts - I remember with my inpatient IGEV, my neuts dropped later than my other bloods .. not sure why, but I don't remember my team being worried. I had filgrastim as part of the protocol too, which I had on the second week in preparation for the drop (it was a 3 week cycle).
When I relapsed after ABVD and IGEV, there never seemed to be an obvious problem showing in my FBC, so I wouldn't have thought your low neuts would be a sign of things going wrong :-) You could call and run it past your CNS tomorrow maybe?
I would say 'stay positive', but I'm sure you've heard enough of that...! ;-)
Hope you are allowed a drink to celebrate your news!!
I think I’m just having a wobble. I’ve been in hospital today to visit a friend I’ve made on my journey and who had a transplant at the same time as me and he’s not in a good place which I think has shook me up. Not nice to see.
With regards to having a beer I’m unfortunately on antibiotics so no beer for me I’m afraid. I’m out on Thursday with my work friends as I finish work on Friday to use up some holidays before my transplant so will have some then even if I am on antibiotics, but just a couple of course!
wobbles are allowed, and good for you coming on here to express it! Hopefully things will go super-smoothly and you will wonder what all the fuss was about!
big hugs xxx
Sorry your friend is unwell, no wonder you are a bit wobbly!
Enjoy that beer Thursday!
Yes Mark, I totally get this wobble. Seeing folks you have walk the SCT journey with is a reality check but the path you are on is set out before you and it’s important to keep your eyes on the end game, on the greater good in all this.
A man ((hug)) coming your way.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: