A long time between posts. I’m going to brief when it should be long. After reporting on good bone marrow and blood results from 100-180 days out, GI issues continued to be an issue. Colonoscopies, tests and scans finally revealed low grade GvHD and a virus CMV. Unfortunately, some of the scans gave some concerns about possible lymph node growth. Late February into March lit up like a light bulb with another Ct scan and two PET scans! Needle biopsy (March ,3) confirmed my Richters is back. Stubborn little cancer and nasty!
This past Friday had an Obinituazamab infusion. Tomorrow I have my first Glofitimab infusion with admission into the hospital for 24 hour observation for likely side effects. Next week the same. Then every 3 weeks after that for a twelve week cycle.
My Dr. was quite frank in using words like dire, severe and unknown how much time!
The GI issues (GraftVs HostDisease) complicate any opportunities of being able to use boosters from my donor to fight this thing. Ironically, my bone Marrow and blood numbers are great. I’m guessing the maturity of the cells just didn’t provide enough cancer fighting ability to keep things suppressed or killed. Hopefully the Glofitimab will, 20% chance. But mostly extra time, no remission evidence.
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FiArt12X
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I don't have the words to tell you how disappointed I am for you, especially after everything you have endured.
I will have a word with the big man upstairs and keep hoping for the best for you. I'm sure you're in good hands and they will throw everything that they can at your wretched Richter's.
I’m gutted to hear this FiArt when things seemed to be progressing so well. Hope they can throw everything possible at it. Emotionally this must be one hell of a tough time and I’m sending every good wish possible for the next round of the battle.
Facing your mortality, with an almost timetable sure does change your perspective. I still for the most part have accepted this and continue to see the positive.
FiArt, I'm lost for words...you have gone through so much and I have loved seeing your updates...I can only echo others. I will pray and hope for your team to throw absolutely everything at this rotten Richters. Petra ❤️
Echoing the words shared here already, FiArt, I was so sorry to read your update. In spite of wishing you had better news to share with us, thanks so much for letting us know what you're dealing with. I just wish it wasn't so and send you every good wish imaginable as your medical team does everything it can to improve things for you.
Sorry to hear you are in this position FiArt12X after you have been through so much. I am sending positive thoughts your way and hope they attack it with everything they have. We are here for you at this difficult time
I am sorry to hear life is throwing more difficulties at you.
What I am reading back in 2022 about the "it works 20%", is there are patients who have gone in to remission. Since the early study had only 100-odd patients, and involved dose escalation looking for an optimal dose, the current statistics may not hold for larger numbers of patients. And since CLL is a "rarer" cancer, these other patients had a variety of other cancers before they got DLBCL. So your doctor is giving you current statistics, but since the patient numbers are small, one can't really say how effective this treatment can be. Especially if you are having GvHD problems. But I think your marrow/blood numbers being good may help tip things in your favor, since one problem with this treatment (like all our treatments) is neutropenia.
I hope & pray you will be one that "beats the statistics." There are people who have responded, when other therapies didn't.
I with everyone else for the wishes and prayers that you have a good outcome in your care. Like everyone else words are just not enough to express my thoughts and prayers are with you, knowing what you’re going through and my hope that your care is excellent as what it sounds to be. 🥰
Hi FiArt, I'll be less polite. What a bloody bummer!! However, there are breakthroughs all the time. And we're all here for a limited time anyway. So, if it buys you extra time, then that's a win. I'm hoping that is what will happen. It sounds like you've a good team with you, which is great. Keep us posted, it somehow helps to spread the load around a bit.
I have a great team! My Scottish Grandfather and mother (WW II bride) would have admonished me if I used “bloody” in this context. It made me smile and times have changed.
My heart and thoughts are with you and yours as you push through this treatment. One of these trials is going to stop/slow Richter's and I pray that it is yours. Each day is a gift for us all. I wish you some laughs, joy, and peace in each every one of your days - may they be many.
I am heartbroken for you...I hope it helps knowing you are surrounded by prayers from people who truly care about your circumstances and wish you only the best. You are never alone- He walks beside us to guide us. It sounds as though you have a great team also. My sincere best wishes & warmest hugs!
FiArt12X, it is gracious of you to update us, as you are facing this. God bless you and your medical team. I believe in God's hand touching our situations and strengthening us through these times.😊Sandra
Things went well so far. Finished infusion of Glofitimab at 1:00 US EST. Fingers crossed, no side effects. I will be released from hospital observation at 1:30-2. If the trend continues.
I feel strongly your attitude and trust in The Lord will win the day! This is certainly not what you expected, but you were chosen to walk this path for a reason and I can say for sure you have encouraged many others, to include myself, to keep their head up and push through even when it’s hard. Science is moving at lightning speed and like a fellow member, I too believe you will benefit from the constant advancements. There’s only one who can call the game and it’s no one on this planet 😊
My thoughts,prayers and good thoughts are with as you travel this difficult, challenging road. You have given us insight,knowledge and hope-know that we give back thanks,prayers and HOPE.Fran
I've only just seen this brave post of yours. Such a challenge ahead for your body and of course I'm adding to the huge number of those sending wishes, prayers and hopes for the best .
You've not mentioned who you have to support you, but sending wishes for strength for them--family and /or friends. Eleanor
My husband and I pray twice a day when I take my Calquence. We ask Saint Padre Pio to intercede for all of us on medications to remove these sicknesses with the aid of effective medications so that all may experience healing.
God has given great knowledge to doctors and scientists to discover medicines that can cure diseases and assist our bodies to heal.
You will be in our prayers for healing of body, mind and spirit. You seem to have a wonderful sense of where you are on this journey without knowing the day-to-day outcome. Please keep us updated.
knowing the power of prayer first hand, I am sending prayers to aid you in your setback. I am so sorry you are going through this. And %ages sometimes don't mean anything. Last January i was told i def had 6-8 months. Oddly enough, I was able to work with that. This January was told by my old oncologist 1-1/2 months 😳. I was so upset I started a countdown. Passed that too. Hoping that the new Gofitimab will surpass that 20% for you 🙏🏻🙏🏻🤞🏻🤞🏻🦄🦄
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