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Hello, new to the forum

Hello everyone, I have just joined. I am 60 and have Myelofibrosis, which is the most serious of the three myeloproliforative neoplasms.

I have already had debulking chemotherapy to reduce the scar tissue in my bone marrow and am now awaiting a date for conditioning and the SCT. (I had a date but my donor caught Covid so it's delayed)

I just wanted to make contact with others who are having/have had the same experience.


  • Hello otterfield

    My name is Michelle I am one of a few Online Community Champions and also a Stem Cell recipient.

    I was treated for Lymphoma and histiocytosis, so do not have personal experience with Myelofibrosis. However I am aware of a few other patients who use the forum that will be able to share their experiences or answer any questions you may have.

    My SCT was delayed by several months after I was unwell. My cells where cyrofreezed. I hope that you get a new date soon.

    This platform is a great place to get helpful advice from others in a similar position to you.

    Should you feel you need additional support then eis an emotional support service via Anthony Nolan; patientinfo@anthonynolan.org or you can speak with a specialist nurse on 03033030303.

    Best wishes


  • Hello Michelle, thank you for responding and it's nice to "meet" you.

    I spoke to my specialist nurse today and she thought that the delay would be about 4 weeks. I keep worrying that something else will happen to delay it. I guess that SCT provokes anxiety in all of us but it's really encouraging to have found this forum.

  • Hi Otterfield and welcome to the forum.

    Like Michelle I'm an online community champion and had a stem cell transplant back in 2013 for Acute Lymphoblastic Leukaemia. I'm now fully recovered and back to a normal life without any lasting major side effects.

    STC's are used to treat various conditions and I guess the preceding treatment varies according to the condition being treated. The de-bulking treatment you've had so far to treat your Myelofibrosis is probably different to what I had to get my Leukaemia into remission, but once you get into the transplant phase itself I imagine that the process will be more or less the same as we all go through.

    I've done a quick search of the threads and there are certainly others on the forum that have been treated for Myelofibrosis which might give you some insight, but I hope that the forum generally will be of use to you regarding the stem cell transplant process, and some of the side effects you may (but not necessarily will) encounter.

    Everyone's overall experience of a transplant will be slightly different but as you go through the process and things happen to you, someone here on the forum will have experienced the same scenario. It is being able to share each others experiences that helps others get through what is after all, a tough process to go through. Please stick around and let us know how you are getting along, and ask any questions you need to, we are here to help.

    I hope you're feeling well and wish you the best going into the transplant.


  • Thank you Steve,

    It's great to know the support is here. Being in limbo, waiting for my donor to be well again, is quite stressful. I'm also trying to get used to my Hickman Line which was inserted before I got the news about my donor having Covid. It's still quite uncomfortable after two weeks. The CNS at my local hospital is looking after it once a week but it makes me quite anxious.

    Thanks again,


  • Hi Jennie,

    Sorry to hear you're in such a terribly difficult place.

    I'm just thinking about what helped me emotionally during my almost record breaking stay in the clinic with so many complications. I practice mindful self compassion. Here's a link to an explanatory ted talk on it.

    I can imagine the only way out is acknowledgement and acceptance of the pain and fear that you must be experiencing and to move into a place of kindness to yourself.

    Thinking of you, with you in spirit,


  • Hi Jennie,

    The Hickman lines do take a bit of getting used to but they make things a lot more convenient as far as getting blood samples and administering medication. After 3 months of needles and cannulas my veins were virtually non existent so I had a PICC (Peripherally Inserted Central Catheter) line in my arm which helped but only had one balun connector. The Hickman line had two connectors which gave more flexibility.

    Once you get used to having the line it will hopefully be OK. It does feel a bit awkward having two tubes hanging out of your chest all the time. I seem to remember I had a short length of sock bandage on my upper arm and use to tuck the loose ends into there so they didn't dangle and get caught on anything or pulled when I laid on them.

    The CNS will be changing your dressing on it each week so will pick up if there are any issues, but if it is feeling uncomfortable or in any way painful, mention it to them.

    I hope your donor recovers quickly and that you can get on with the transplant soon.

    All the best,


  • Thank you very much to both Helen and Steve for for your kind and helpful comments (and for the video link, Helen).

    As it happens there is now some bleeding under the Hickman Line dressing which is worrying me, as it's now nearly three weeks since it was put in. I have left a message for the CNS team at my local hospital and the dressing is due to be changed on Monday anyway.

    Thank you, Jennie

  • Hi Otterfield,

    I'm Rachel- Lead Nurse here at Anthony Nolan.
    I'm really pleased you've been able to some support from our forum, it is an understandably anxious time waiting for your transplant but it sounds like everything is going to plan.
    I wanted to get in touch to offer some reassurance regarding your hickman line having some bleeding. I'm pleased you've contacted your hospital/CNS about the bleeding, hopefully they'll be able to discuss with you and ascertain the amount of bleeding and if you urgently need to be seen or not. Often lines can produce a small amount of bleeding at the site, particularly when they are newly inserted- it take a few weeks for the 'knitting in' process to work for a hickman line.

    If the amount of bleeding is small and confined to the dressing area and appears to have stopped its unlikely anything needs to be done before you see the CNS on Monday for your routine dressing change. If there is a lot of blood that has breached the dressing/caused it to lift from your skin, or it is continuing to bleed then you may need to be seen sooner/today

    The others on the forum, who have had a line in, will be better placed to tell you how to manage getting used to it but from my experience, of looking after lots of patients who have had lines in, they do become more comfortable as you get used to them and you'll be delighted to have it when you start having lots of blood taken to monitor your counts in the coming weeks!

    I hope that provides some reassurance.
    Good luck with your up coming transplant.
    Best wishes

  • Hi Rachel, thank you very much for responding and reassuring me. As it happened, when the CNS phoned back she offered to have a look at it the same day, so I went to the hospital and it was looking fine.

    It's too easy to start worrying about things when they are unfamiliar so I'm so pleased and grateful that I have found this forum.


  • Hi Everyone,

    My name is Andrena & have CLL. This was only picked up 4 years ago when I was getting tested to be a live kidney donor for my husband. Unfortunately my specialist could only look back over 5 years of bloods so isn't sure how long I have had it. I also, to complicate things, have true pernicious anaemia amongst other chronic illnesses. At time of diagnosis, I was told it was Monoclonus B cell lymphoma of CLL phenotype which "probable will not change". It has changed in last 2 years to CLL.

  • Hi Andrena,

    Welcome to the Forum. It's great to have you with us.

    Hopefully in time other Forum members with experience of CLL will be able to share their experience with you here. You may also find it useful to look at previous conversations about CLL here on the Forum.

    In the meantime don't forget we also have our Anthony Nolan Helpline in case you would find that useful at any time. We can also tell you about our free Telephone Emotional Support Service. We're on 0303 303 0303 or you can email us: patientinfo@anthonynolan.org

    Take care,


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