18 month post-transplant review

IMG_2306Today is 18 months to the day after my allogeneic transplant. It’s my 18-month-iversary!

I’m alive, pretty well for the most part, looking and feeling good. So today is worthy of a celebration, although it is more of a quiet nod of acknowledgment than a champagne party.

Here’s a review of my current health status:

  • The myeloma is in remission. Hurray!
  • I still have 100% chimerism. Hurray!
  • All blood counts are within normal range (apart from slightly raised eosinophils, which can be indicative of Graft versus Host Disease, so no-one is concerned about them)
  • Graft versus Host Disease [GvHD] continues to make my mouth dry, tight and sensitive. No treatment has worked, I still cannot cope with spicy or hot foods/drinks. Either it has slightly improved or I have adapted to it. It doesn’t bother me as much as it did previously.
  • GvHD, in combination with being post-menopausal, also continues to make my vagina dry, tight and sensitive. I get some benefit from using Vagifem oestrogen pessaries, but mostly I just live with it.
  • I had two smear tests. The first attempt was very painful, I bled and they didn’t manage to collect sufficient cells, so it had to be redone three months later. That was slightly less painful, with no bleeding and a successful collection. The result was clear. Hurray!
  • I have had a successful mammogram. All clear. Hurray!
  • For over six months, I have been experiencing tightness and loss of flexibility in my muscles, most noticeable in my legs and arms, but also affecting fingers and other muscles. It has been investigated, with no clear outcome. My consultant is now willing to consider that GvHD may be the cause (which is what I had said all along). I will write about this in more detail in another post.
  • I am seeing a Physiotherapist to help with the muscle problem but I’m not impressed so far. He has never come across these particular symptoms before, so he has given me a sheet of generic exercises to do daily, but I’ve only done them once. I don’t believe they will make any difference.
  • A recent MRI scan showed some deterioration of my T12, L1, L2 and L3 spinal vertebrae, most of which was evident in the skeletal survey carried out on diagnosis in 2011. A bone density scan was recommended however to check for osteoporosis. I’ve had the scan, but not seen the results yet.
  • I have completed the full course of Zometa (bone strengthener). Over two years, I’ve had eight four-weekly infusions, then eight eight-weekly infusions. After that, the risk of osteonecrosis of the jaw [ONJ] is deemed too high to continue taking the bisphosphonate medication.
  • Slightly more worryingly, my lung function has decreased over the past months, since the transplant. A CT scan has been requested to see if there is any lung damage caused by GvHD. The loss of lung function could just be residual effects from a recent cold virus. If it is GvHD, there is no treatment. It usually remains at the decreased level, but is unlikely to get worse.
  • As well as muscle tightness, I have recently been experiencing aching knee and elbow joints, particularly at night and on waking. This is very new and I haven’t mentioned it to a consultant yet.
  • I experience fatigue on a daily basis, usually feeling sleepy around 4-6pm, finding it difficult to do much in the evening, often sleeping for up to ten hours a night and finding it hard to get out of bed in the morning. It doesn’t really stop me from doing things I want to do, but perhaps it should…?
  • your brain after chemoOn top of the fatigue is chemo brain: short-term memory loss, inability to retrieve words, almost impossible to multi-task, short attention span, difficulty concentrating and reading, etc. I’m reading (or trying to read) a book to help me manage it. More on this subject in another post.
  • I am still taking anti-depressants. I weaned off them in the summer, but began experiencing anxiety again, so after discussion with my GP, I recommenced taking them. I now feel emotionally stable and will continue taking them for a while yet.
  • After all the excitement over sleep apnoea/UARS mentioned in previous posts, I don’t use the CPAP machine absolutely every night, as it still annoys/upsets me. However I do use it if I’m sharing a room, out of courtesy.
  • At an optician’s appointment, I found out that my eyes watering, which I thought was due to tiredness and fatigue, is actually a condition called dry eye. It is caused by Meibomian Gland Dysfunction. It is a common problem with age, although it can also be a side effect of taking Fluoxetine. Treatment is with an Eyebag and lubricant eye drops. I will write about the dry eye story in more detail in another post.
  • Weird side effect of who-knows-which-bit-of-treatment is that my nose always runs whenever I eat, hot and cold food alike. I don’t have a cold or an allergy… just a runny nose!
  • IMG_2623Daily, the prescribed drugs I take are Penicillin, Aciclovir and Fluoxetine. I add Menopace, a menopause vitamin supplement and have just started taking Omega-7 to help with the dry eye. According to the blurb, it may also help the mucous membranes of my mouth and vagina. I’ll let you know how I get on. In the meantime, I love how the added orangey-red capsules make my tablet boxes a lot more colourful.

And a quick review of my current activities:

  • Tai Chi classes continue twice a week and I now assist the teacher with a new beginners’ class
  • Volunteering for Citizens’ Eye Derby continues
  • Following a Mindfulness course at the Nottingham Maggie’s Centre, a few of us continue meeting weekly or fortnightly to support our mindfulness practice
  • I have started swimming once a week with a friend, usually doing a minimum of 30 lengths (half a mile)
  • I recently participated in a Playback Theatre UK annual gathering and am looking forward to further training and workshops
  • IMG_2614Having relearned to knit, I have begun a new project to make handwarmers – photos will follow when completed
  • I proudly write a four-weekly column for the Nottingham Post newspaper and am looking for other writing opportunities to earn an income.
  • I have my fingers in a few exciting, creative project pies, which are in various stages of coming into being. Life is exciting!
  • I am not blogging much, which I miss, but somehow don’t find time, energy or head space to write, even though I have lots to share.

So, there we are then. Not the most riveting of posts, but I wanted to mark the day with an update, as much a record for myself as anything. I need to publish it now as it’s way past midnight and my anniversary is over. Roll on two years! Then I might have a more lively celebration.

In the meantime, I hope I can blog a bit more frequently. Any hints or tips on how to keep up with blogging regularly will be warmly welcomed.

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10 Responses to 18 month post-transplant review

  1. Congratulations on your anniversary! Or what I like to call a re-birthday. 🙂

    I’m glad you are doing well overall. However, I also understand and can relate to the various annoying GVHD. Of course it’s something you get used to in a weird way, but it is nonetheless annoying. I hope they are not impacting your quality of life too much.

    Like you wrote, it’s a question of finding ways to deal with it using various products.

    I can relate to dry eyes, mouth and vagina, runny nose and joint pain.

    For the eyes I use a gel at night and lots of preservative free artificial tears.

    The dry mouth I use Biotene toothpaste and mouthwash and when it’s really bad, there’s a biotene gel and spray.

    And yes, hot and cold food, including spicy foods are difficult to deal with. Careful not to hurt the lining of your mouth.

    They’re not ‘life threatening’ issues but they do get tiresome.

    You are a great inspiration with all the activities you do. You are enjoying life and living it so positively.

    I send you lots of love and big hugs and wish you many years to come.

    I hope one day to be able to do what you do. I’m very proud of you.

    Sent on the TELUS Mobility network with BlackBerry


    • Jet Black says:

      Thank you so much MC. And I am proud of you… Look how far you’ve come… still alive and laughing! I hope being in your new home helps to turn things around for you. x


  2. Congratulations on your 18 month anniversary! I am glad to hear that you are doing well and I hope the bothersome things will lessen. You inspire me with your strength and your mental energy that keeps you involved in many things. All the best to you…Love,
    Carole Leigh


  3. Deborah says:

    Congratulations Jet.
    You are an inspiration and I really admire the way you seem to live your life with passion and excitement, but also allow yourself days off on between.
    I am also very grateful and appreciative of your honesty.
    Deborah x


    • Jet Black says:

      Thanks Deborah!
      I also appreciate my honesty and I’m pleased when others do too. I know I am privileged to be able to make the choices I make when it comes to how I live my life. Hope you’re doing well and living passionately too. x


  4. I have to echo Deborah, you are indeed an inspiration Jet. Just think how much your life has changed in the past few years and you’ve been the catalyst for a lot of positivity in other people too. Hope the Docs can come up with a diagnosis for your aches and pains and that you continue to celebrate many more anniversaries. Hope to see you in December. xx


    • Jet Black says:

      I read your comment this morning, Meg, and the “you’ve been the catalyst for a lot of positivity in other people too” line keeps running through my head, making me feel proud and purposeful. Thank you so much for your friendship, support and lovely feedback. Looking forward to December already! x


  5. Your 18 months post transplant anniversary is definitely worth a nod, I’m glad that you find life exciting and long may it continue to be so xx


    • Jet Black says:

      It’s funny, when I was writing this post, I was feeling tired and the writing felt like a chore. Amazing that excitement still managed to bubble through. Looking forward to more adventures of the Myeloma Meisjes (Dutch = girls – that’s you and me, in case the title was too oblique. LOL!) x


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