HL back 4 years after Auto Stem Cell Transplant

Hi Soge and welcome to this corner of the community.

Sorry to hear that your husbands HL looks as though it as returned following his Auto SCT 4 years ago. This would be disappointing but unfortunately not unusual.

There are a few folks with HL or their family have posted about the same thing happening. In these cases the folks went on to have an Allo (donor) SCT and are doing great years on. I don’t think that a second Auto would do the job so they would have to be more aggressive.

I have a rare type of incurable NHL and could not have an Auto SCT as I could not be put into remission to get my cells harvested so went on to have 2 Allo SCTs…. my first Allo was in June 2014 but this failed by Christmas so I went back for a second Allo in Oct 2015, remission achieved Sep 2016 and I remain in remission to this day.

I will say that following my second Allo I have had lumps and bumps come and go and initially my mind went straight to relapse but this was not the case as my immune system was fragile so infections have been part of my life……. the one thing I have learned is that until it’s confirmed that a relapse has happened…… it has not.

I was diagnosed way back in 1999 and until Oct 2015 I was relapsing every 9 months moving into the next treatment.

What is his clinical team saying?

Hi, thank you. He is 60 next year, he’s in good health but he did develop a faulty valve in his hart through treatment, although this gives him no symptoms.

he is there today, I’m guessing like last time the next step will be a bi-opsy

thanks 

I was 59 and 11 months when I had my second Allo SCT.......... and I developed a heart problem during my very last chemo session during the conditioning.

Lets see what his team say and do come back once you know more.

Thank you & I will do 

I will also say that I had one lump appear 6 months after my second Allo and 7 years on it’s still there and not a problem 

My husband Had PET scan and oncology team saying nothing showing for concern so at this stage no biopsy! I’m concerned though as why is the node swollen and not going away! Could nothing show on PET but be there on bi-opsy? Should I ask for second opinion?

This is great news. As I said I have one lump that has stuck around for years, I have never had a biopsy and it has never been a problem.

I have also had lumps and bumps come and go and by the time I see my consultant they are gone…….. this is the post SCT challenge…..

A PET is the best tool for lighting up areas so if there is nothing to biopsy it’s hard to see why they would blindly do a biopsy.

Second opinion is always an option, I never bothered as I have always trusted my medical team.

Thank you… I just worry as he only had a swollen lymph node the second time before Auto SCT, but it must have lite up on a PET then.

thank you, we back in December anyway.

 Thanks again 

It can be hard when stuff like this comes along and when the ‘what if’s?’ kick in.

It takes time to build a trust in our post SCT bodies….. just keep an eye and if anything changes significantly then call it in.