Refractory HL - is there still hope?

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Hi...

A brief intro about me: 29year old mum to twin girls who are 5. My fiance looks after all of us. I was diagnosed 3rd July 2019. I knew I had it and had to fight for a diagnosis. I had 12 rounds of ABVD and radiotherapy. My tumour in my lungs had gone from a tennis ball to a 5p coin. After 3 months my tumour was back up to 3cm. After awful surgery to take a better biopsy I was told it was scar tissue.  I voiced my concerns but was still left all summer. By the time September came my tumour was nearly back to its original size. ESHAP only shrunk it by 1cm and I've now had 2 out of three treatments of Brentuximas immunotherapy. Stage 2e

I had a ct scan last week which showed no growth or shrinkage and I'm struggling to see any light at the end of the tunnel. I grew up with a mum who was practically absent most of my life and I can't bare the thought my daughters could grow up without me. I just don't know what to do. I've had my stem cells harvested but haven't managed to get to the transplant ready stage. I would do ANYTHING. 

  • Hi  and welcome to the Community. I am dropping in past from our NHL group as well as outlets dedicated Stem cell transplant group.

    I am so sorry to hear about the challenges you are experiencing and for some it’s all about trying every route to find the correct treatment that works.

    I had to have two Allo (donor) SCTs and this did eventually get me into remission for the first time in over 17 years.

    There have been a few members on this group and in the SCT group have had the same journey so let’s see if they are still looking in ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi ,

    yes yes and yes there IS hope! There are great strides being made combining relatively new drugs, including Brentuximab (that, still in trial stage, was the first ever remission our daughter got after over 7 years of treatment!) 

    A good idea is to ask your team to consult with renowned experts in this field, people like Professor John Radford at Manchester’s famous Christie Hospital, Dr Chris Macnamara at London’s UCLH, Dr Graham Collins in Oxford. It’s not often that they are needed but they do get consulted and have brilliant ideas to share. 

    John Radford was our daughters consultant and highly knowledgable though getting towards retirement now so I suspect he’s part time. 

    and daughter has been in remission since 2011 now, so there’s lots of hope!

    Hugs xxx

    Moomy