Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated everyone's best wishes and prayers for my recovery.
I was admitted to the ward on 19th June, the exact day of the 10th anniversary of my CLL diagnosis. I hoped that was a good omen! I spent that day and the next having covid and other tests. My six days of intensive chemo with Fluarabine and melphalan then started. The last two days I also had Alemtuzumab to reduce my T cells and help the donated stem cells engraft.
I coped with the chemo pretty well, no nausea or sickness at all and I felt really well. The day before my transplant I had my first doses of cyclosporin to prevent graft versus host disease (GVHD) and almost immediately I started to feel nauseous. Cyclosporin is dispensed as a very large gel capsule and the smell is revolting. So much so, that the clinic recommended opening the packet and putting it outside for an hour so that the awful smell can dissipate. For me, Cyclosporin induced severe vomiting, about six times a day plus in the night and tremors so bad that I couldn't use a spoon, write or type a message.
The first three to four weeks after my transplant was just a sea of nausea, vomiting and fatigue so bad that I couldn't even lift my head and struggled to look after myself. Honestly, in that state, time has no meaning, I wasn't even able to think and I just drifted between sleep episodes. My mouth was so sore and dry that I could hardly talk, even morphine didn't help. For 24 days I didn't eat and had almost all my fluids and drugs via my PICC line. My hair took a while to come out but once it started I was bald within a few days and even that process was panful.
I was so weak when I came home that just the effort of trying to climb the stairs to bed was enough to make me vomit and I spent the first week sitting, vomiting and sleeping. I had three appointments at the BMT clinic that first week and next. The effort of getting mobile was complicated by low blood pressure, anaemia, dizziness and carrying the ever present vomit bowl because of the real worry of unpredictable vomiting. Things changed after a clinic appointment about 6 weeks post transplant when it was decided to stop the cyclosporin and change to tacrolimus and the change was an improvement, almost overnight. I was still weak but the vomiting stopped, my tremor improved and I started to feel as though I could try to do small things like walk around the garden.
Since then, apart from a few days in hospital with a BK virus reactivation and intermittent blood transfusions, I have improved week on week and am now back to taking my girls on shortish walks in woodland again. That feels so healing, to be outside in the sunshine and amongst the trees again.
My new German stem cells have engrafted nicely and my platelets and neutrophils are at very respectable levels although my red cells are a bit slower catching up. Prior to transplant I had no detectible CLL at a level of 10 - 6 but I had enlarged lymph nodes. However, my recent CT scan showed no lymph node enlargement which is just great news. I have a BMT scheduled for October to test for Chimerism - how much of my marrow is donor and how much is mine. This result is the best predictor of my long term response and chance of cure. If the results are suboptimal then I will receive donor lymphocytes to induce some GVHD to finally eliminate my own marrow.
I'm sorry it's not all sweetness and light and did consider drastically sanitising my post. This is not the whole story but I hope this strikes the right balance between the good, the bad and the ugly side of my early post transplant journey. Remember that this is my experience and everyone’s journey will be different and I actually feel quite well now albeit that I still get tired easily.
My lovely dogs have been, as always, a huge source of comfort and joy.
I hope you are all well.
Jackie
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thank you so much for such a very detailed description of your treatment to date, that can’t have been easy to write and must have brought back some awful memories like smells. But great to hopefully have a good outcome in the near future, and your girls must have missed you so much, but great to be back walking outside again.
After such a horrible time I am certainly glad that you persevered and are doing better now. Getting outside in your own space with your pups is definitely a healing experience. Good luck going forward with the rest of your treatment.
Thanks so much Jackie for describing your experience. Bazaar a bit as I have been trying to phone the CLL office directly in the last few days, but didn’t leave a message to see how you were. And didn’t want to send a message to you just in case. What an awful time you have had, I can’t imagine. But here you are out of those woods and into your own woods with your dogs. An amazing fete. What a mess that cyclosporine caused. You truly are amazing. I am sitting here in awe! All the best for the next markers. Take care
Hi Jackie I am so glad it is over for you. My son hated the cyclosporin with a vengeance well that and the other 20 tablets!....take recovery a day at a time. My son was the same post transplant really ill. He has the muciositus in his throat etc. Eating was hard. Don't over do it as fatigue can still strike!....keep us all updated. Sending you a hug. X
Been thinking of you these last few months, so I am grateful that you so generously shared with us your momentous but bumpy transplant journey. I imagine those adorable dogs are thrilled to have you back. All good wishes.
Phew, Jackie, what a tortuous journey. Why couldn't they switch you from the cyclosporin earlier? No need to answer that... I'm glad that you didn't let us have the deodorised version. It's important that we all understand how the condition and the treatments are different for everybody.
I hope your subsequent posts are going to let us know how well you've responded. In the mean time, enjoy a mellow autumn, with many healing walks with your lovely dogs in the woods.
Jackie, thank you so much for sharing with us some details of your experience so far. That you were so concerned with the balance of your words and how they might be perceived by us, well that simply speaks to who you are.
What you've been through and how far you've come already is just remarkable. I am so glad that you are now able to feel a bit more like "you" again in certain important ways, that is wonderful.
I have to say too that the last sentence you wrote about your beautiful dogs has just warmed my heart.
I have to agree with Debkat999 your last sentence was beautiful to read and heartwarming to imagine the love from your dogs after an unimaginable time! Hoping your progress will bring you the health you now deserve. Beautiful photo too.
Jm, thank you for sharing your experience. Your strength and courage is paying off! I am so glad to hear you are doing better now. We often wonder if we can persevere through times like this but you did and hopefully are now on the road to complete recovery. 3 cheers for you!!
Oh Jackie, you've been through so much .. thank you for being so honest. Hopefully the worst is now behind you and you can just focus on regaining your strength. Dogs and being outdoors are healing indeed. Wishing you good results at your next appointment and praying for a cure for you, you certainly deserve some respite after such a difficult experience.
Many thanks Jackie for sharing, and all the education on how it can all work.
It reminds me years ago after telling the management at work that I had CLL, one of the top managers made some very dismissive comments to me and demanded to know why I wasn't simply going for a transplant, and didn't believe a word of my reply.
Now I am sure of one thing. Those two furry friends will be doing everything they can to get you well again. Sounds like they have made a good start.
Jackie, it is so great to hear that you are slowly on the mend and heading in the right direction after such a tough experience. Thank you for sharing this experience with us to give us hope in the possibility of our CLL one day becoming treatment naive. One of these days I want to share a story of my brother in law and how he did with his stem cell transplant after he became treatment naive for lymphoma that he found out about a day after I found out that I had CLL. He is my hero as I am sure that you are to many of us. I pray that you will one day soon be able to go on full forest walks with your beautiful dogs. Stay strong!
That sounds so hard, you’re strength and endurance are an inspiration. Thankfully it sounds like you are through the storm, sending you positive vibes and thank you for your honest account.
I am so glad to hear from you! I did imagine that your silence here meant you were struggling. Thanks for sharing your journey with us. I'm really happy you are recovering and your nodes shrinking is definitively good news! Take care x
Oh, it really feels swell to finally see your post on HU, Jackie!
You have been through a hellish experience but I think it's so important that you went into detail because it provides important information that can be useful to others. Plus, we want to appreciate what you went through in order to get well.
Thank you for going to the trouble of doing it.
I hate the thought you went through what you did but am so grateful you are now feeling better and can enjoy the pleasures of your fur babies...snd outside doing it!
Jackie, you sweet soul! This must have been so difficult for you to write. Thank you for your kindness in posting your journey for the rest of us. I pray for your cure.It makes me smile and warms my heart to read about your walk in the woods with your furry friends. At the moment, mine is snoring on my lap...maybe I walked him to far today. It's such a gorgeous Fall day. I hope you and your girls enjoy longer walks with each passing day. Take care.
Jackie, I'm sorry to hear it has been such an awful experience...I don't even want to begin to imagine. Thank you for sharing all the bad, it prepares others for what's to come...I hope your recovery continues and that you will get the test results you hope for. All the best Jackie and take it easy, be kind to yourself ❤️❤️❤️Petra
It’s so good to hear that you’re home and gaining strength day by day after such a horrible experience! Thank you for your honest report. It is valuable information for many on HU. Best wishes to you and your family.
I have been hoping we would hear from you soon. Getting a little worried. Never fear! As I suspected, you have been on a rocket ride to the edge of the universe and back. Here’s keeping my fingers and toes crossed for your upcoming October BMT. Happy, happy you are among us, leading the way. Thank you ever so much for what you have done and continue to do. Bud
So very good to hear from you. The *good, the bad and the ugly* is appreciated. It must have been difficult to recall the details. To know you are back and healing is sweetened by the photo accompanying your post. Thank you.
At some point , may we know why it took so long to switch to tacrolimus?
I asked why, if cyclosporin is so awful, do they not use tacrolimus. The answer was that my nausea, vomiting and tremor was at the extreme end of the spectrum and most people have only minor issues that resolve over a few weeks but mine worsened worse despite 9 anti sickness tablets every day. I could also hardly stand or walk more than a few paces because I was so weak and dizzy which added to the nausea, life was very dismal and at that point I couldn't see how I was going to ever improve.
When I was first diagnosed my ex said "why worry, you can just get a stem cell transplant". As if it was akin to taking an aspirin.... even then with limited knowledge I was aware it was no walk in the park. You have my admiration for your courage and determination not to give up.
Hi Jackie, I’m in week 3 of having SCT and I totally empathise with your hospital stay- that cyclosporine is a tough drug and I had same issue as you but they’ve kindly given it to me IV this last week. Lots of anti-nausea meds has helped to. I hope you continue to recover, and get the energy for more outside doggy fun!
Hi there, I do hope your experience is better than mine but don't be reticent in asking for tacrolimus if it all becomes too much. My understanding I that it is not a cost issue, just that hospitals have more experience of cyclosporin. For me, just opening the packet and that smell was enough to make me vomit I was taking 9 anti vomit drugs a day IV and I was still vomiting all the time, I couldn't concentrate on anything . I lost nearly 30 pounds in 3 weeks.
i have been wondering Jackie and glad to hear from you. What an ordeal you’ve been through, pleased to hear you’re on the up at last.
Thank you for sharing your story with such honesty, These treatments din’t come without a cost to your body and it seems you’ve had more than your fair share.
So pleased and relieved Jackie to see your post. Hopefully the worse is firmly behind you. I'm sure there are many like me that have been watching and waiting to hear how you are.
Full of hope that your future, after all you have been through is a bright one.
Thank you for an honest warts and all recounting of your experience. That was a tough post to write, because in doing so I'm sure you kind of relived the whole experience.
You are one tough cookie, sure we are all proud of you, and the others who walk that path but have not felt able to share their SCT journey.
It was so good to hear from you Jackie. I am sorry you have been through such a difficult time. Sending best wishes for continued recovery and the best possible outcome.
When I saw the picture of your girls, I knew you were on the road to recovery. I have two yellow labs that are my best medicine. Thanks for sharing your journey and may your strength continue. Sally🙏
Jackie, I had to read your post twice, I think I couldn't take it all in the first time. Horrendous, I'm so sorry you had such an awful time. It sounds that the worst is now over, and I sincerely hope the BMT is positive and you continue to feel and get better quickly.
I am happy that you are finally feeling better and hope you continue to progress. I am also glad that you shared your experience with us. My doctors told me that I will have to go with the same process and I hope I have a good outcome. Thanks again for sharing.
So happy to see your post on here but of course so sorry you have been through such a hard time. Thank you for sharing what must have been a hard post to write and I can only imagine your struggle over what details to include or exclude. Onwards and upwards from here on I hope and do keep us posted as you gather strength.
just reading the previous 56 replies Jackie. Ditto to all of them. You had a hellish experience at a time when choices had dwindled. Very grateful for the details. Especially the detail that you made it back into the sunlight with the girls.!
Oh wow, that is rough and you are one tough lady!!! Thank you sharing and being brutally honest about your experience! I'm glad you have your dogs to love on you and keep you moving!
Jackie, thank you for sharing. So happy you're headed in a better direction now. I'm sure everyone here wants to know the good the bad and the ugly. I don't like the unknown. I'll keep you in my prayers. Cindi
It’s good to see your name on here again Jackie. You were missed and I don’t doubt many are relieved to hear that you are safe. They say when you’re going through hell, keep going and you clearly have.
I hope things continue to improve, your bmb goes well and the walks with the dogs get longer and longer! Take care, sending all good wishes & virtual hugs. Lynn
Welcome back! It’s awesome to hear you have been successfully treated and are recovering. Wonderful news for a wonderful lady!
I greatly appreciate your detailed explanation of the past 90 days. Not how you wanted to spend your summer vacation I’m sure but it is over! Your post isn’t for the faint of heart but it is insightful and the knowledge is incredibly helpful for folks like me who may face this treatment in the future.
I hope your recovery picks up steam and you return fully to your normal routine very soon.
Oh my, Jackie. That was an ordeal. I had to look up cyclosporine because I had no idea why you had to take it. It’s to prevent rejection of the donated cells. I am glad they were able to find a substitute; sorry it took so long.
Enjoy being outside in the woods with your best buddies
I am so sorry things didn’t go as smoothly as hoped, but I’m glad you are beginning to feel better. Take care of yourself and keep us updated on your continued progress!!
Thanks for your detailed information on your stem cell program. I have been thinking of looking into it, there is a lab here in Costa Rica that is researching medical use of stem cells in partnership with another lab in California. I've been invited to visit but will wait until I'm closer to needing it.
I've been on ibrutinib for 4.5 years, and for the first year has side effects, but after reducing the dose to 280 mg per day they stopped. My blood work is that of a healthy person - so far so good..
As you continue your journey I would very much appreciate it if you could let us know from time to time the ups and downs of you program. I'm sure all of us are hoping for a complete recovery and would love to hear that, but if there are further bumps in the road it would be interesting to know what I might expect.
I have a Dalmatian and a giant poodle, and I agree, they are the best of friends - always there for you. What a comfort when you are down and they cuddle up to you!!
Jackie, I was thinking of you a lot lately and was thinking that if we don’t hear from you this week I will message you. You had really rough time with your transplant and I’m. so happy for you to get it behind you and enjoy your walks with your beautiful ladies again.
Here is 🥂💗 to nodes shrinking and hopefully you will be cured 💐
Jackie they always said to me service ARMY strong-I now say Jackie strong. Please care for yourself and let your Furry friends bring lots of happy days! Fran
You have the strength of warrior and you are helping so many people through your journey - I'm sending hugs to you and prayers up to heaven for a speedy 💖 recovery
Jackie, so glad you didn’t sanitize your challenging (to say the least) journey. It felt important to hear all of it, in exactly the way you told it. Thank goodness they took you off that drug and that things are improving.
Wishing you the best and please keep us posted. 🙏🏼🙏🏼
Thanks so much for the update, Jackie, and for including the good, the bad and the ugly. Lots of us were longing to hear from you but completely understand how you couldn't write earlier.
Glad you had your dogs alongside you. I know what a comfort dogs can be.
Wishing you all the best for the future and for more energy to return,
So good to hear from you Jackie. Thank you for the update and so pleased to hear you are starting the journey to getting back to normal. Take care of yourself and keep cuddling those furry friends.
Thanks for your sharing your experience Jackie, I had been wondering how you were going. Sorry to hear the first few weeks were so awful, especially all that N&V - horrible!! Wishing you a much better time in the weeks and months ahead, and success with the impact on the CLL 🤞🏼🤞🏼🤞🏼. Walking with your beautiful dogs must be good therapy 🐶 🌳 😊.
Thanks for sharing your journey with us Jackie. Sounds like you had a horrible time but hopefully you are on the road to a cure now. Woodland walks with your dogs must be pure bliss after everything you have been through.
How did I miss this post? Very inspirational Jackie, makes me feel dumb for all the small stuff I worried about this month. Great to see you posting again!
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I was taking 9 anti vomit drugs a day IV and I was still vomiting all the time, I couldn't concentrate on anything . I lost nearly 30 pounds in 3 weeks.
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