Allo for Hodgkin’s

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.

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.

Hi Mike,

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.

Regards

Mark

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.

Hi Mark, 

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. 

Hugs xxx 

Hi Moomy, 

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. 

Regards

Mark x 

Hi Guys,

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.

Regards

Mark

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.

Hi Mark,

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. 

Hugs xxx

Hi Mark,

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!!