A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic BTK mutations) and following the failure of the Bispecific T cell engaging antibody treatment to make any impression on my rapidly accelerating CLL I started Venetoclax and Rituximab in April 2022 as my 4th line of treatment.
It was slow to make an impression on my considerable amount of disease with not even laboratory evidence of any tumour lysis and at 6 months I still had residual disease in my bone marrow and some lymph nodes. My lovely consultant started to plan for the worst and I underwent tissue typing to find me an unrelated volunteer stem cell donor. The rationale was that Venetoclax wasn't going to last that long and that with my aggressive and genetically unstable disease Richter's was a possible development in the future. Pirtobrutinib remissions were not long enough to give me the disease control we wanted.
At 12 months, April 2023, I reached uMRD in both blood and bone marrow although I still had a few marginally enlarged nodes (2.5cm). My Dr rang me with the results and said that if I was going to have a transplant then now was the time to do it. I gave him my usual protests about being too old and not wanting a transplant and he countered with the fact that I could wait if I wanted to but I might not be able to have it in the future if I relapse or become unfit for another reason. I knew he was right my CLL is undetectable and I am very fit and well but I didn't want to face it.
I thought about it for a week, then gave the go ahead and the process started. The potential donor, a lovely young man in Germany, was contacted to check he would still consider donating. He said yes and he underwent all the necessary health checks. I've had three weeks of investigations to ensure I'm as fit as I appear and amazingly I am! My donor donated his stem cells on 12th June and they were flown over to Birmingham to be processed. This week I've had more tests and a PICC central line put in for all the chemo and blood products to come over the next few weeks.
Monday the six days of chemo starts, intravenous fludarbine, Melphalan with Alemtuzumab to reduce my T cells. On the 7th day I get my new stem cells and then the waiting starts. Apparently there will be difficult days and I'm not sure how often I'll be here but hopefully I'll be out sometime after six weeks.
Hospital is going to be hard as I'm used to walking my three labradors for hours and hours every day. I will miss the outside, the woods and the fresh air so much but hopefully it will all be worth it. I'm so grateful and feel very fortunate to have a proactive doctor and a suitable donor.
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening leukaemia. Hardly a ‘good’ cancer ! 😕
Sending best wishes to you all
Jackie
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Jackie thank you for sharing your update with all of us. Please remember that you have the support of everyone here, and we all send you our most positive thoughts and wishes.
You are strong, fit, steady, practical and wise, and I feel each of those attributes are really going to serve you well now.
And I love this picture of your three beautiful, smiling girls!
I’m on holiday presently as you know Jackie but you’ve been in my thoughts and concern.
I know how much you’ll miss your wonderful canine companions (your hubbie too but he can visit! 😉). You have a challenge ahead but it’s one you’re entirely up to meeting. How unselfish that a young man in Germany has volunteered to donate his stem cells. I feel like giving him a grateful hug!
Sending the hugest best wishes possible. You’re very special to us all.
Thank you so much for the update! Difficult days ahead, and you will miss the walks and the dogs. I wish there was some way to replicate that!! But I don't think Zoom as progressed that far. We'll get chatbox ai to get to work on that and maybe before you get out they'll have a "star trek" bluebell walk for you. It will be great when you get out of hospital! Sending you strength and love and courage. You're in good hands and you're in good shape 💪👍 Fantastic!!! ❤️
On reflection I agree. Watching a couple of last week's races on TV was scary enough for me. Recent VR simulations of TT racing on YouTube look incredibly realistic, and the immersive 3d experience must be truly stomach churning. I don't think your medical minders would approve.
I can understand how much you’re going to miss walking with those three beauties Jackie.
I will keep you in my prayers for everything going perfectly and you will be able to be cured soon. You have been very kind and generous with your understanding and advice to us here. I appreciate your help at the beginning of my journey very much.
Wishing you all the best, you have been brilliant to this community, with your knowledge and support. Your lovely labs will be waiting for you. Thinking of you
Oh Jackie, you've had such a difficult couple of years but I admire immensely the way you've kept fighting on. It can't have been easy at all and I'm sending you my warmest best wishes for the easiest possible treatment and a successful transplant.
I completely understand how you feel about having to stay indoors as I too have always spent most of my time outside. To be confined to hospital in summer is especially cruel timing but I hope and pray you will be able to enjoy many happy and healthy summers (and winters!) in future.
I hope so too, I believe there's been research confirming hospital patients do better both physically and mentally when they can see trees or plants. From the sixth floor you should be able to see quite a way I would think.
I notice you've had a huge number of responses, just shows how important you are to this community and how very much we care about you.
Well done Jackie, yes it is a brave step when you are feeling well, but you are wise and knowledgeable enough, to know that this is the right time to beat it before it decimates your life. I have been on this site for a very long time and always feel that I have no right to participate as I am fortunate that I am one whose Cll while a pest, is stable and not needing treatment. But I follow and care about so many who have not been as fortunate as I. That certainly includes you, you matter to so many here.
When you embark on this journey to a new life, know that I too and I am sure many who do not write wish you a successful treatment.
Mere words cannot convey the strength I wish you as you see this through.
Jackie, I'm so relieved to hear that all is in readiness for your treatment next week. My wife and I are very much looking forward to walking your woods again with you, only this time you'll be cured. Meanwhile I can see you've Lottie, Grace and Mabel, patiently waiting to help you through the difficult days ahead, along with both your immediate family and friends, along with this large international family that you have tirelessly supported for so many years.
Keep those pups and leisurely strolls as the carrot at the end of the stick!! Even though I don't know you personally, you have supported me along the way and I wish you the very very best!
Well I'm wishing you all the best and I'm confident you will smash it. .my consultant has said as it stands when I fail ibrutinib 6years now that like you ven with a view of a stem cell within two years as I'm 17p . My brother in-law had a SCT last year at 63 after failing r chop for non Hodgkin and he is now completely clear better then ever All the best
Jackie, I just want to send you my best wishes for a successful outcome with your impending treatment. Also I want to thank you for all the valuable advice you given me in the past.
I had a nephrectomy in January and walking into my home from Hospital to be greeted by my golden retriever was the most magical start to my recovery. I love the idea you have of cctv in your kitchen absolutely brilliant therapy for you!!
Jackie, this is kind of an emotional read...so selfless of the young German lad...difficult and scary days ahead but the focus is on a positive outcome and I always think that I don't mind having a difficult time as long as it's worth it at the end...and I know you will have the same attitude. I so pray it goes well and that you will do great...who knows what your update will be next year on this day...maybe a photo with 4 dogs and telling us you have just done a 5km walk and you are off to the Caribbean the next day 😀All the best, we are all rooting for you.
Good Luck with the procedure! Please keep us posted. We'll miss you if you can't be online a lot. I am sure you will be really busy for a while, but hoping to hear how your procedures go and how you are faring through this.
Sending you every good wish for a fantastic outcome, Jackie.
You’ve given so much to this community through your tireless support and advocacy. Now, it’s time for others to support you and I look forward to hearing that everything has gone as well as can be and you have achieved a hugely successful result.
The time will fly by and you will be back walking the woods with your lovely canine companions before you know it. I’m sure your dogs will be anxiously awaiting your return.
I’m so impressed that your son was a stem cell donor at twenty two. Wow! That says volumes about him as a person and you as a mother who instilled such selfless values in another. After you get this procedure behind you please consider having a story written about you and he. It is an inspiring tale and I’m sure it would compel a reader somewhere to become a stem cell donor.
By the way, you will love the PICC line. I wasn’t excited to have mine put in when I had a hospital stay in December but what a positive difference it made.
I wish you well Jackie. You are going to do wonderfully. Stay positive. You’ve got this!
Thank you for your lovely message Mark. I'm determined to be out as soon as I can and running half marathons by September (not a full one, I don't want to be too ambitious!) x
You have stayed and continue to stay the course, you marvelous soldier. Leading from amidst us. So, as you surge on, we surround you on all sides, holding you up wherever you need. Feel the energy everywhere you turn. You are Winnie incarnate: you “Never give up. Never, never give up”. Thank you. Bud
Thank you, Jackie- for what you give to this community and for sharing your journey in such vivid details. It really helps me to understand the process. & Your amazing son (a donor at 22!) is a reflection of your parenting and unconditional love. Cheers to the young German for completing the circle back to your family. *moist eyes* here. Thank you for the stunning photo. Your *girls* are so lovely and your devotion to them will keep you strong and thriving. Our arms are around you & all will be well. xox Diana
Dear Jackie, so dear to so many of us on this site. You have helped my wife and I through some low and difficult times with her CLL. Be assured, we will be storming the gates of heaven with prayers for you over the next 6 weeks.🙏🙏🙏🙏🙏🙏
Hi Jackie,I wish you all the very best for results and the weeks ahead. I appreciate challenges you face, however I'm sure you will come through. The 'incarceration' may be tough, but think about the other side and those long walks that will be getting closer daily.
Please do share a little when you feel up to it as many of us are interested and you've done so much for us.
Love the photo of the labs, our Newfie x St Bernards says hi.
OMG Jackie you brave thing. What a roller coaster of a time you have had with CLL. I am overwhelmed with admiration for you and your beautiful dogs. I have owned labs my entire life and they were my rock during treatment. I know you will miss them dreadfully but they will be loyally waiting for you when you come home. I send you every possible good wish for the weeks ahead. Patrick
Wishing you all the Best with this new treatment!Appreciate your input on this site and look forward to your continued advice and comments after you’ve completed this part successfully!
We care about you and hope that it all goes smoothly!
best of luck Jackie. I read an article once about a gentlemen who had been fighting CLL for the best part of 30 years. He had a stem cell transplant and is Aliance and healthy. Your be back with the dogs before you know it, with that brand new immune system!
Sending positive thoughts and vibes your way. May your recovery be fast and uneventful. I hope if I have to go through this process I am as prepared and as strong as you 🙏
Jackie, because I hadn't seen a distressing post from you since you started venetoclax, I had wrongly assumed you were doing well. I'm so sorry to hear where you are and of course wish you well.
I wonder how much we share, including the same consultant and a love of labs. My venetoclax treatment is no longer effective, a biopsy on my grossly enlarged neck lymph node suggested a risk of Richters, and after having had all lines of currently approved treatment, I'm hoping to start the Loxo/Pirtobrutinib trial next week. If that doesn't give me a reasonable remission, who knows, I'm 79 next week, and although I feel well and am fit, I don't think I can face a stem cell transplant (even if I was offered one).
You were very helpful to me some time ago which I'll never forget. i wish I could help you now. I shall be thinking of you.
Roger, sorry to hear V is no longer working for you. There are some promising treatments coming up so all is not lost.
My Dr felt now was the time for us to seize the opportunity, I hope he’s right but I’m definitely feeling anxious and a bit I overwhelmed with what’s ahead for me.
Jackie, you are amazing! The thoughts and good wishes of us all at CLL Support go with you. We'll be with you all the way, and I'm going to persuade you to speak at one of our conferences about your experience later this year. You can even bring your dogs!
Well you should be clear by now that the love and support of this whole beautiful community (which you have been so instrumental in helping to build) goes with you into your treatment. Wishing you nothing but the best in the days to come 🙏💚🙏
Good luck. That would be a lovely picture to have in your room with cheerful thoughts to distract you. I will be thinking of you,. You are so kind to us all.My dog is long gone and I miss him. We used to say ' can you run' and he would race around the field and we would laugh. He would pinch a sock out of the washing basket and guard it on the lawn and he would run away if you moved.
The reason I mention this is to remind you to think of happy things and have a list of things that make you laugh and smile. I will look on the bright side for you and you will know we are all thinking of you. Love Anne xx
Good luck tomorrow. We met a chap the other day and he looked great after a stem cell transplant in Oxford.Several years ago we stopped to speak to this man and he was a customer at the bank I worked in, but he was talking to my husband and it seems they stood together at football. I used to see him at the hospital. He had too many red blood cells and he looked unwell. It has worked. Sorry Im waffling again.
Just want to join others on here to say thinking of you at this anxious time...as you say it's a big decision to take when you feel healthy, but of course that's why you need to act now, as you are doing.
Thank you for everything you do for this community, sharing your experiences n knowledge so openly and clearly for us all to benefit from.
I hope you feel the love we are all sending back to you..and your family who will be anxious too.
Wishing you all the very best and looking forward to your updates when you feel up to it.
Jackie just had to add my thoughts and prayers for successful outcome for this complex journey. I hope for every anxious thought you can replace it will all the love and good wishes from this group. As a long hauler of this disease I will be watching your progress with much anticipation and admiration. Thanks for the picture of the Labs I can tell they are routing for successful outcome. Fran
When I get anxious about it (most of the time!) I try to remember that they have done this hundreds of times and are a national centre of excellence so I'm in good hands. I'm not good at other people making decisions for me though, could be hard for me!
like the others, I’m rooting for you too. Best of luck and just get through the next few weeks. Play some bird song and seascapes, even whale music if that helps(!) and get back to walking the dogs really soon. xxx
Thank you camper2, birdsong is a good idea. Unfortunately, no fresh air as the windows won't open. When I was in there last year I 'adopted' a pigeon that came to the window regularly. It was like Alcatraz!
I know just what you mean...I have had several (thankfully much shorter stints in that same hospital unit) n it's tough during the summer with no air and need to keep blinds down too in this heat. But you will enjoy walking your dogs so much more n feeling the elements in your face when you get out of there so hang on to that thought! You might trade your adopted pigeon for a city (sea)gull this time if you are lucky!
Let me join everyone here in wishing you all the best, Jackie. 💕
You have been wonderful in providing the medical details of your situation (educational for someone like myself), but also sharing your feelings, whuch makes your posts so relatable.
I am so grateful you have been given this option and are in good medical care. My thoughts are with you and routing for a most successful outcome. No doubt your beautiful labradors will be eager to assist in your recovery. 😍
CLL with all the risk / reward decisions we have to make is a very anxiety driven disease. I hope for you when this is all finished you can look back with the assurance of, Wow I got it right. Rooting for the best outcome for you. Thank you for all the selfless kindness and knowledge you have given to us.
Jackie - Being brave doesn’t mean you’re not scared. It means you do it anyway despite your fears. I wish the most boring stem cell transplant ever. Kudos to you for braving this, to your doctors, to your son and your donor.
When we were on our vacation to see family and friends this past week, we stayed at a lively AirBnB. It was a cottage behind a beautiful home. As we followed directions in the dark and emerged into the back yard, I hear a couple of woofs and was then rushed by four Golden Retrievers welcoming us to their home. After a session of petting and head scratching, we entered our cottage. Each time we left or returned, this was repeated. It made for a wonderful, memorable stay.
Patti, that’s lovely. I felt like I was walking with you to that cottage. It sounds heavenly. I’m looking forward to holidays, the theatre, cinema, restaurants etc when I’m better, things i haven’t done in a long time. x
having been through this process, again with a German donor, make sure you have access to TV Wi-Fi etc . There will be long periods of boredom so fortunately there is plenty of sport or films to choose from nowadays. Good Luck
It was in 2008 in Leeds. Had a Donor Lymphocyte top up from same donor after 7 months (planned). Suffered a couple of infections in next 12 months which required readmission but recovered okay. Back to normal in about 3 years. Be sensible and keep away from any coughs and colds. Nowadays just on annual follow ups
Thank you for the great update. U are very blessed to find a matching donor. I will keep you in my thoughts and prayers for nothing but success during your journey. Looking forward to hearing from you soon. Your dogs are beautiful too. 💜🤞🙏
Hi Jackie. Thank you for sharing with us. There's a lot to be read between the lines. Wishing you all the best in the next part of this journey. Here's to a complete recovery 🌿
It's great that you have such a proactive consultant Jackie - you certainly deserve only the best. Thinking of you & wishing you a speedy recovery from your SCT.Take care
Wishing you all the best for a smooth and complete healing. You have been so giving to help so many of us with CLL. We all recognize the selflessness of your son. Sending prayers to you and your family.
Wishing you all the best as you face this difficult treatment.
Seeing your beautiful companions reminds me of former President Bill Clinton. When he decided he needed a dog ( actually his consultants said he needed a dog to round out his image in the white house ) he could have chosen any dog. What did he choose? A chocolate lab. Yes, they are a handsome breed.
Well wishes to you Jackie on this stage of your journey. May you sail through the next six weeks and be back to walking those gorgeous pups through the woods in no time. Kim
Jackie, my thoughts will be with you during this time. I always make sure I read all your posts. Always so informative and helpful. Wishing you the best of everything. Take care xx
Good luck, Jackie! My neighbor got through a stem cell transplant for a different blood cancer several years ago and is off to Alaska this week on a cruise, she stayed positive and you can too! Keep strong, I will pray for your good fortune and healing. Maria
All the best and I hope the transplant gives you a lasting remission Jackie. Beautiful photo of your dogs - they will be waiting for your return home 😀
I love the picture of your pups, they are beauties. Wishing you well on this next stage if your journey. The first person who reached out to me on this forum had a transplant decades ago!!
Hi Jackie, it’s about 6am Monday, London time, and it’s unlikely that you’ll read this today. I’m sorry that I didn’t see your post earlier. Your CLL friends from all over the world are all thinking of you today, wishing we could personally support you as you have supported so many of us. Looking forward to your next post and hearing that the transplant was successful.
Wow, how did I miss this post? I just have not been reading the forum as regularly as I used to, I guess.
Best of luck to you Jackie, my good friend I’ve never met. I hope you will keep us all up to date on your progress. As you must know everyone on here, including the dozens upon dozens you have helped, are pulling for you. Jeff
Hi Jackie, a week has gone by since your post, and today I suddenly started thinking of you. Hope all going well, and I am sure you are in all our thoughts. 😘
I hope that if your procedure has started that it is going well Jackie. I know that you are a strong willed person and will make it through this and be back with your wonderful dogs on a wonderful adventure through the woods. I will be praying for a smooth journey for you and a great recovery.
Thank you, I’m trying to keep active with walking up and down the ward between various medical interventions. Averaging 7,500 steps a day so far and making walking friends. x
7,500 steps a day in the hospital is impressive! I recall walking around and around the floor I was on this past January trying to keep active. I didn’t set any records although I was moving quicker than a few of the nurses at 7AM on New Year’s Day! Light exercise will make you mentally and physically stronger and it helps break-up the monotony and boredom. Carting around the IV isn’t ideal but you are proving it’s an obstacle that can be overcome. Awesome work!
That is a great idea Jackie! I did the same after having a fusion done in my lower back. Some days my wife would have to coax me into do that, but I know that it pays off with recovery. It was strange walking past one room on the floor that had a COVID positive sign on the door though. I made sure to walk on the other side of the hall when passing it...
Keep up the great spirits and enthusiasm! It will hopefully pay off for you...
glad to hear you are doing well Jackie. Good luck! Thank you for all the wonderful advice you give us all, and thank you for telling us about your treatment! You have been through so much! 🤗🤗
I'm afraid I have been a bit behind the door and missed your post. I am just catching up and want to send you all good wishes for a successful outcome to the transplant. Your steps are certainly impressive, and without your gorgeous dogs too! It makes you feel so grateful that there are donors out there like yours in Germany and your son here in the UK.
Thank you for posting your journey and lots of positive vibes coming your way.
Jackie - So sorry, somehow missed your post ??!! My finger is exhausted scrolling on my cell phone thru the many hundreds of awesome replies, lol. You have a well earned huge fan base like my fav but no longer band, Pink Floyd.
Here’s hoping alls going well now and that your stem cell procedure was an A+ ?!
I have always enjoyed reading your posts (and replies) …. AND your admin efforts on developing/updating the needed vaccines for us CLLers (a pinned post btw for those that havnt read it) is to this day one of my all time favs. I referred to often, a life saver post that can be. Great post work on that critical topic Jackie!
Keep us posted on your journey and oh…. your pups 🐶 🐶 🐶 are awesome looking. Life with pups is the best, right?
Dear Jackie I have not been on Health unlocked for quite some time, so I just learned of your stem cell transplant. Wishing you all the very best! You were a lifesaver for me on many occasions Xo
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