So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
Remission : So the PETSCAN and the bone marrow... - CLL Support
Remission
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SwiftT
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Congrats on remission!!
Question though, why would you still need a transplant? (Forgive my ignorance lol I know very little of this stuff still...)
Carol 🇨🇦
Because remission is not a cure. And if it comes back it will come back more aggressive and faster
And your not the only one that’s ignorant I’m most definitely ignorant when it comes to this
Pardon my ignorance too. I understand that our CLL cannot be cured?
So what is better than remission for us? What would transplant achieve?
Rgds
Vinnet
Again not ignorant. And remission doesn’t mean cured. It will most likely come back so they’re saying transplant is the cure. So they tell me that’s why I want a second opinion
Positive news. Now onward brave soldier.
looking for a match can take time. I was sent to Dana Farber january 2019 to do the peliminarys. They found me a 10 point match. Then the imbruvica brought it down to lower levels. Why are you going all the way to MD anderson in texas from New York? there are several excellent bone marrow transplant hospitals in northeast
SwiftT• in reply to
My brother is a 50% match but I want a second opinion before we proceed. There are a lot of side affects and risks with the transplant. I want to make sure I’m making the right decision
• in reply toSwiftT
unknown to me there appears to be low risk versions of b-pll. someone else on the site sent me this info. since you said you have no bad markers -
ashpublications.org/blood/a...
That is a really good article! 😊
Any idea which of the three groups you fall into?
• in reply toJm954
since i don't know if your asking swiftt or me. Swiftt says he has no bad makers.
Bad for me i am both 17p deleted and tp53 mutated. Until i was sent that info i thought all b-pll were like me. since they are not i don't see way someone with low risk b-pll should be different than low risk cll.
Old information from years ago just blare out Transplant
SwiftT• in reply to
Oh thank you I’ll read it for sure
what kind of transplant are you getting again. there are more than one but i don't think you answered me the other day.
Congrats on remission. You could be in remission for years and something else as far as treatment could come along.
I would definitely get second opinion. 💕
Congratulations!! 👍👏👏👏👍
I’m so happy on your remission my fellow b-pll er. I know this stem cell decision is so difficult. I think about it every day and like you so unsure. I have been reading on the car t therapy but it’s still in trial. Whichever way you go I know it will be a good one.
SwiftT• in reply to
Thank you MrCandi praying for you. This decision is hard. Lots of side affects. Long time away from my family (6weeks in hospital) just lots to think about
Awesome.
MsLockYourPostsPassed Volunteer
Wonderful news! I’m glad that you are getting a second opinion about proceeding with transplant. It’s a very big decision. Knowing that you are in remission means that you have time to do your homework and get other input. The advances in transplant procedures are as amazing as those for CLL treatments. Haploidentical was unheard of not that many years ago. Now the procedure is saving patients who would have had no hope before.
I hope that you and your brother get along. My cousin’s son received a transplant from his brother 4 years ago. His brother now has an opening for lots of friendly ribbing about favors owed in return. Start working on comebacks. LOL!
Oh we’re good. He volunteered to be my donor I didn’t even have to ask.
My cousin’s are very close. But they get some very funny exchanges going about who owes who - all in good fun. My cousin actually had a twin - match was too close, and a sister who matched (male trumps a woman who has had children, as well as his donor brother. They all get in on the joking around at times. We’re all grateful that things have gone so well that they can joke about the whole thing. Hoping for the same for you if you go that route.
My dear hubby did transplant that caused him very serious GVHD and ...... I was very sadness and have been regretting for more than half year for the transplantation. His sisters is 10 point matched, so the Dr advice him to do, but the GVHD developed very complicated and the more medication has to be taken every day that brought the Liver and Kidney big burden. The biggest problem is that the immune system was damaged. More GVHD controlling and other medication may caused Cll relapse again or develop to DLBCL, it is very difficult to death with CAR-T or do another Chemo. Sometimes the risk is out of your control. Now I can not control myself to recall the whole journey. It is a long story. First, control with medication it may extend your life for several years for Waiting new method or medication. The transplant is the last way to choose. Hope the information for your reference.
Swift,Really encouraging for me n all others like us. Congrats .God bless all the suffering humanity Amen
your age perhaps dictates maybe the transplant. i;m 18 years older than you. I'm closer to the last roundup. And you have no bad markers. My siblings have both had breast cancer and were ineligible. good luck to you also a siblings cells are almost like getting ftom self
Why MD Anderson if you live in the Northeast? You’ve got Dana-Farber within a few hours of wherever you are.
I take it you were seeing an oncologist, and not a CLL specialist. Ibrutinib isn’t the only next step. There’s Acalabrutinib (fewer side effects), Venetoclax, clinical trials, etc. MD Anderson is, of course, fabulous, but an elite cancer center has some disease centers that are great and some that are world’s best. Right now, you definitely have what you need closer to home.
Stem cell treatment (if that’s what you are considering) is always an option, but if you’ve recently gone MRD negative (do you know that term?), it’s probably time to enjoy a holiday from treatment. There are risks with any treatment, stem cell included. Why not enjoy the break and seek treatment only if/when it’s needed. Also, I don’t think it’s so cut and dry that when it comes back, it comes back with a vengeance. Seeing any good CLL specialist will be better than an oncologist. Personally, I’m happier knowing I’m getting world-leading care close to home (in Boston).
Texas was highly recommended to us. And I was seeing a lymphoma doctor 🥼. Not sure why but according to her Roswell doesn’t have a B cell pll or a cll specialist. And they won’t give me any of the drugs. I asked I wanted to use the transplant as a last resort. To see what they came up with in the next year. But my doctor and her boss are against that. That’s why I’m seeking a second opinion
• in reply toSwiftT
there are no b-pll specialists. Not enough of us.
SwiftT
I agree with Lily Pad Master that there are closer top flight flight cancer centers, such as Dana Farber, to you than MD Anderson. I also agree that MD Anderson is arguably the best cancer center in the WORLD especially for complex cases like yours. You made a very wise choice. I wish you all the best.
Mark
• in reply toLily_Pad_Master
Lilypadmaster-what did you decide to do with your mrd negative status after your acalbrutinib/wenetoclax/gazyva trial.
Lily_Pad_Master• in reply to
As it turns out, I have a single calcified lymph node that has refused to go under the 1.5 cm limit. So, I did not get the option to discontinue treatment. It was a bit worrisome at first, because the most recent CAT scan actually showed it going up by a few millimeters. But my team carefully explained to me that the scan can only get so many slices of such a small area, so if it happens to find the larger part one time, it might look like it grew from the last, which might not actually be the case. I'm still MRD-, which is what really matters and I don't have much in the way of side effects from the meds any longer. It's just a bit of a PITA with all the pills. But, this also has a chance of driving an even deeper response. Thanks for asking !
• in reply toLily_Pad_Master
at least you don't take the gazyva any more
SwiftT, I am very happy for you. What did you do to achieve total remission? I went to MD Anderson and it is the #1 place in the country to go to. They do their very best to get you in and have your tests and treatment planned for you. There is also a hotel on grounds that makes it easy for your family to provide you with support. I don't think they would treat you unnecessarily with a transplant if you didn't need one. I wish I could understand more. I know very little compared to everyone else on this board so I look forward to any information I can get. I truly wish you the best of health and hope all goes well in Houston. Gerry
Thank you Gman I truly appreciate it. I’m looking forward to getting this second opinion from them. Now if my current hospital will play nice and send over my documents so I can get the appointment that would be wonderful
Congratulations on good results and remission !. You have a very hard decision to make about stem cell transplant. After the initial month in the hospital i think there is still about a year for recovery. I have b-pll and 17p tp53 (which disappeared from the last bone marrow biopsy) and RE transplant due to b-pll I was told 60% chance of success, 10% chance of death within the first year (and the dr thinks that is good, but is it? I don't know). For now, I told the dr my decision is to stay on medication since it is working and to go to another medication if needed when/if venetoclax stops working
Remission is a wonderful word. I live in Miami, Fl and went to NY Weill Cornell and saw Dr Richard Furman to get a second opinion. He is a CLL expert and came highly recommended and he was fabulous. I agree that a second opinion is the best idea. I am not an expert, but I wouldn't rush into a transplant because if you are in remission for a year, there may be a better treatment then. Good luck.
the tougest thing about having b-pll is having talks with my MD whom i think is very good and i like. However occasionaly she is a pain-and i;m sure to her i am also.
there are no drugs with indications for b-pll. So we get treated as high risk cll, practially no studies of b-pll.
so our typical conversation,
ME-i read this recent article about high risk cll. I make suggestion.
Her-But you don't have cll- you have b-pll(shocker)
ME - but you treat me using therapies for high risk cll.
HER- Yes.
LOL-then i sigh
SwiftT• in reply to
Same conversation on this end as well
81ue• in reply to
My online chart summary for when I had Rituxan instead of b-pll says"You were seen on Thursday January 2,2020. The following issue was addressed:Chronic lymphocytic leukemia." I plan to ask the doctor about that. The infusion room is attached to the dr's spread of office spaces and exam rooms for ease of sharing info with nurses.
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