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Thank you

Hi forum,

I'm happy to be here. My dad was diagnosed with stage 4 CLL 18 months ago. He kept his diagnosis to himself, and decided to go for the aggressive chemo and bone marrow transplant route. The chemo went well, and had suppressed the cancerous cells and so the transplant was agreed. None of the siblings were a match and so an external donor was found. The transplant was smooth, the only thing wrong was his donor cells were not prevalant/active and so three additional transplants were made from the leftover stem cells. Unfortunately the third extra transplant caused the chimerism count to spike - it was at about 150 days. Dad went in to hospital with an infection, left after a few days and then left spending the weekend at home.

Dad was readmitted on the Monday with an extraordinarily acute graft vs host of the skin. The next 3 months were a horrendous journey for him, in immense pain and doing everything he could to survive. Unfortunately after 3 months in hospital, with 5 trips to intensive care and many proeceures he died.

We are shattered. I've seen dad go through **** on every level. I've experienced the challenges of relationships at these times, and how things are tough between everybody who is close to the patient.

This group has been very helpful to me, I only wish I'd found it earlier so I could have talked to dad more about the risks.

So thank you for this resource. I've started writing about my experience and would love to share this with the forum if you are interested? I'd also love to help in any way I can because as a family despite asking many many questions we were simply not prepared for what happened.

With love.

David

Comments

  • Hi David,
    I am so sorry to read your post and so sorry for what you, your Dad and your family have had to go through. I admire your Dad’s bravery in throwing everything at it that he could.
    As to writing about experiences, that is something I do too. I think it is very therapeutic. I don’t know if this is the right forum to share, but I for one would be interested to read.
    I’m sorry that you only found this forum now, but please stay around to help others who are going through the process. I have come to learn that no one experience is the same, but I think your Dad’s journey is one that is important for people to know about, and I think it would be a fitting legacy for him.
    All the best,
    Greg
  • Hi David, welcome to the forum and thank you for posting. I'm so sorry to hear about your dad and that he didn't make it after all he'd been through.

    I'm glad the forum has been useful to you and hopefully reading through some of the posts on here will show that many of us share the same experiences your dad will have gone through. Chemotherapy is a tough enough process as it is and to have a stem cell transplant at the end almost feels like a step too far. I know by the time I had mine I was so poorly I really didn't feel like going through with it.

    That said it does give us a chance of getting rid of our illnesses so it's a chance we have to take rather than resign us to the inevitable. We are all different though and whilst the success rates are improving all the time and complications are reducing through improved screening, there are sadly times that it doesn't work, as in your dads case.

    As the title suggests the forum is for patients and families, and we have several family members here that are supporting loved ones going through treatment. I'm sure your experience in helping your dad go through his chemotherapy and his transplant will be of use to others, so whether you share a link to your thoughts that you are writing, or respond to some of the posts from family members here it will be helpful to others, and that is what the forum is all about.

    Best wishes,

    Steve
  • Hi David,

    I am one of the community champions on this forum. I had a cord blood transplant in 2013 after several relapses of my non Hodgkin's lymphoma. I am so very sorry about your Dad. It is always a brave decision to consent to a bone marrow transplant - the statistics re success v failure are frightening - but at least he and the family knew he did everything possible to survive. At my last relapse I was offered the choice of a transplant or palliative care. I couldn't have faced my family if I'd chose the latter.

    The forum would definitely benefit from your input. As Steve says, many posts are from loved ones, with whom you will be able to associate with better than us ex patients. One of the Anthony Nolan staff may be able to advise on the best way to share your writing.

    With very best wishes,
    Sue

  • Hi David,

    I'm Tom in the Patient Services team here at Anthony Nolan. I was so sorry to hear about everything your Dad went through. That must have been such a hard time for all of you as a family.

    I'm glad you have found the Patients & Families Forum to be helpful, that's exactly what it's here for. As you've discovered this is a very friendly and welcoming community with a wide range of personal experience and insight. We're very happy to see you here.

    I'm glad you're finding it helpful to write about you and your Dad's experiences. Please feel free to share your thoughts in this Forum as you have done or, if you felt able to, we could work with you on writing a blog entry. Our blogs are all here: https://blog.anthonynolan.org/ - take a look and get in touch on patientinfo@anthonynolan.org anytime if you were keen to look into doing that.

    And if you need any further help at any time, our patients & families enquiry line is always here on 0303 303 0303 or email: patientinfo@anthonynolan.org.

    All the best,

    Tom
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