2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended
2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait.
2018 escalating white blood count and lower red blood cell count encourages consideration for treatment.
2018-2019 enter clinical fixed duration of Ibrutinib plus Venetoclax (not yet FDA approved) 15 months Ibrutinib combined with Venetoclax 12 months. A number of side effects, mostly minor but sometimes rough. Initially great bone /joint pain, later nausea and diarrhea almost daily with fatigue. Eventually figured out to separate taking medications at different times, relieved symptoms. Bone Marrow biopsy revealed uMRD prior to end of study. 2 1/2 years uMRD
2022 Bone Marrow biopsy reveals CLL mutation to BTKi resistant. Resume Venetoclax plus 6 mos. Rutuximab. I do well on this treatment with minor side effects. I personally find that a half cup of Greek yogurt in AM seems to help digestion and bowel problems. 1 1/2 yrs. Doing well.
End of 2023 extreme decline, many tests, reveal CLL transformation to Richters. 5 days of high dose Prednisone works wonders. Oncologist places me on Pirtobrutinib that also works to arrest disease. No real side effects.
Discussion of treatment options are limited because of aggressive nature of Richters. We decide to go ahead with Bone Marrow Transplant (BMT).
April 2024 disease is showing signs of returning. Oncologist suggests Chemotherapy to keep disease in check until BMT.
O (Obinutuzumab) CHOP (DOXORUBICIN (Adiamycin), vinCristine (Oncovin), cyclophosphamide (Cytoxan), Prednisone) plus Neulasta ejections.
April-May 2024 3 cycles of O CHOP until BMT in Later June. BMT donor 10/10 match June 17.
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FiArt12X
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You’ve had an eventful, treatment filled CLL journey FiArt and as someone who has similar chronography, it makes me rather nervous. There must have been times when you’ve felt like you were trying to push the tide back out! I’m pleased you have a brilliantly matched BMT starting next month and wish you well for its complete success. Since we were both dx in 2012, treatment options have thankfully expanded immensely.
Yes, there were many moments of anxiety, “push back against the tide”. My caregiver (my wife) and I have been really good at “putting IT in a box and sticking it on a shelf”. However, this last challenging 5 months, I didn’t mention the week in the hospital, has been rough. I am encouraged that the BMT will be eventually successful.
I appreciate your well wishes! I wish you well in your challenging journey to stay a step ahead of our disease.
Quite the journey indeed Fiart. (My ipad kept autocorrecting your handle FiArt to Fiat by taking out the “r”, which I suppose is better than had it removed the “i”).lol. Does your handle come from an interest in fine arts?
Good luck with your BMT. I hope you will keep us updated on your progress. You appear to have a positive attitude and that, along with your 10/10 match, should greatly improve your odds of a successful transplant and hopefully a cure.
One of the cll doctors I saw along the way on my cll journey just happened to be a marrow transplant expert as well. He told me they get better and better at doing transplants each yr that he has been doing them.
I am 71 years young. I am lucky enough to have a great medical team and facility.
You are correct about the improvement in handling the procedure and post care. The post care is where the most danger is and greatest improvements have been made.
Onward, and I will do my best to keep everyone informed.
I wish you well with your BMT. A 10/10 match is fabulous. When I think about folks who volunteer to be donors my faith in humanity is restored. That is a special type of person. May I ask how old you are?
Mark I am 71 years of age. Prior to this last our onslaught of CLL transforming to Richters I was very active. Most people say I look much younger and personally I feel much younger. I still try to be as active as possible.
I agree with you about the people that are donors. The process is a little involved for bone marrow. The people that donate a really Lifesavers!
FiArt12X, thank you for posting about your journey with CLL, and now with RT. I know how thankful you are that you have a Wilmont Cancer Center team accompanying you, and now that you have chosen a BMT, that a 10/10 matched donor has been found. Best wishes to you as this journey moves forward, and thank you for the ever-so-encouraging posts that you have made in response to others over the past year or so.
As I sit here happily off treatment after 18 months of Ibrutinib (had an SVT and Sepsis) I think how well I fell and how lucky I am. Then I read how complex CLL is and what a dangerous disease we carry with us. It reminds me not to be complacent! I hope the BMT is successful and leads to a cure for you.
I would encourage you to be aware, but not to dwell. As I’ve said before in some responses my situation is of a small percentage 2-5%. The majority of CLL patients will not experience the severity or aggressive nature I’m experiencing.
Plus for a major part of my journey my health and quality of life has been good. I will be posting more specifics posts. My intentions is to be informative, especially if individuals find common situations.
have to say your synopsis of your CLL journey is impressive, though I am sure you could have written a book on the emotional path you have your wife have walked during these trying, difficult and upsetting times. I am one of the fortunate folk whose cll has remained stable, so often feel that I am not entitled to be a member of this rather special community. I have been here for so long that many of our fellow travellers feel like friends and matter to me.
Good luck to you as you embark on the next part of your journey, having walked in your wife's shoes, I know how hard it is for her who can only stand by. Best wishes to her too. Please tell her she is thought of too.
My husband had an autologous stem cell transplant in 2022 for his CNS Lymphoma, he also has CLL. Admittedly not as intense as an allogenic transplant, but the harvesting can be intense. The chemo is the tough part and you're already getting that out the way.
The transplant itself was somewhat anticlimactic for him and I hope it will be for you as well. He even got covid while in the hospital waiting for his counts to recover, but he was still able to be discharged after about 24 days and didn't experience any covid symptoms.
Ask questions and pack as many comforts as they'll allow. We had a kettle in our room to make tea, as it was our daily ritual at home. He mainly slept/rested when he wasn't doing his mandatory walks. I believe he spiked a minor temperature that lasted less than 24 hours, which is to be expected during engraftment. We met with the team beforehand and got a lot of information, which was probably little comfort to my husband, but as his caregiver, I felt better prepared to handle whatever issues arose.
I hope this transplant gives you a nice long remission. Never hesitate to raise your concerns. Wishing you and your wife as easy a process as possible.
Thank you so much for sharing a bit of your experience. All information is helpful.
We will be good advocates for ourselves. I’m lucky my wife is excellent at assessing situations and asking great questions. Our oncologist team as well as the BMT are very responsive to questions and informative.
your journey has been long and hard I’m sure, but you are an inspiration to all of us, knowing that there are multiple options that can keep kicking this enemy back. Glad you have a great match! Blessings.
Thank you for sharing your up and down journey. As someone on their first Tx, BTKI monotherapy, how long it will last and what the next treatment might be is frequently on my mind. Your experience with significant pitfalls from which you have gotten up over and over is an inspiration. With a 10/10 match I wish you good fortune on your next treatment and that it be very long lasting!
Thank you for your well wishes. I have similar wishes for your treatment to be good to for a long time. What you can be comforted by is there is so much research and breakthroughs being made. Hopefully, if the time comes you need another treatment, you will find some very effective treatment/therapy.
My first trial (which gave me 2 1/2-3 years of non treatment bliss), 90-95% of the 300 participants were still uMRD without any need for treatment. The future is looking good!
Beautifully written. Strong and determined. So glad you have such a great match! And sounds like a very supportive spouse as well. Hugs and best wishes to you both!Please, keep us informed about your progress.
You may wish to lock your post. I'm sure that will increase your reply numbers. 🌹
you have been through a hell of a lot. As is the case for so many of us. I do not frequent H'U' too often. do you post a lot,? How old are you./ age at diagnosis? " The "Hang in there" comment from friends relatives and Md's get old, I do not hear lament in this post of yours .How are you emotionally or spiritually after it all?
I have had a rough experience during almost 7 years and with the most recent start of third oral chemo wound up with pneumonia. starting to feel resigned to what may be an uncontrollable decline .
Having said that I would LOVE to have success with this third line treatment but mortality is more and more in mind. Not depressed , just tired of the struggle.
Good on you for the willingness to embark on so many challenges.
I understand the weariness that can be caused by this disease and in our cases the struggle. It is very difficult for people unfamiliar with this type of cancer to understand our situations. I have an incredible wife, who is with me every step of the way. Most importantly is a support group I belong to through the CLL Society. Before Covid we met in person, but have been using zoom once a month. There are people at all stages of watch and wait or treatment. It is incredibly supportive to have and help others navigate through many of the challenges you mentioned. It is open to everyone. We have people that join us from various locations in the “States”. I know I couple of times talk with an international group of a similar make up. So I know they exist to be there for anyone. It’s very different to be able to talk to people “in person” with facial expressions. This sight is great but I can tell you how beneficial the support group has been for me.
I will add, my first chemo treatment, I ended up with an infection high fever and 7 days in the hospital. I had the whole spiral of my life was ending. It was an emotional rollercoaster, that eventually gave me more resolve and advocacy for myself. I do get where you are coming from! My hope is that there will be some bright spots/inspiration to and possible new treatment to give you quality of life you may appreciate.
Sending you support for the upcoming BMT. You have been an excellent steward of your condition, availing yourself of every possible treatment and opportunity. Blessings to you and yours, and for your healing.
I wish you all the very best for your all transplant. I too had an all SCT from a young German male donor and I posted about my struggle with recovery here.
Almost a year later and thankfully I am starting to feel more like my pre transplant self. It's not an easy journey but sometimes we have no choice but to grab this 'last chance' with both hands.
Jackie I find the whole donor planning amazing. I was having my IVIG this morning and in the next bed was a guy who had his last autumn from a young male in New Zealand, and I commented to his wife how well he was looking.
Thank you Jackie, I’ve had few others relate their experiences. I’m aware the recovery can be rough and take up to a year. Yet as you say, the outcome is better than what the other result would be without the treatment.🙂🤞🏼
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