I have Trisomy 12 unmutated. Age now 77 years. Diagnosed in April 2015. I was extremely tired, spleen was enlarged and lymph nodes in my groin, under my arms, under my right (jaw) throat and strangely small nodes that come up on my upper lip under my nose beneath the skin.
I've been on 420mg of Ibrutinib (Imbruvica) for five years. My now 6 month oncologists visits show my WBC's in the normal range and most likely in remission. Although, I believe my immune system is compromised as evidenced of recent pharmacy mistakenly gave me a shot for shingles that was old and a live virus. I believe this resulted in me getting Pericarditis (rare) and hospitalization (for me extremely painful) a few days after the shot. I understand that should you have CLL you should not take live virus shots. The Pericarditis in me was a virus that settled in the pericardium two-layered fluid-filled sac that covers the outer surface of the heart.
I've had other problems the past two years that I believe are not related to CLL. Spinal operation just recovered, chronic low sodium, a case of pneumonia recently and other.
Also, I still have occasional small lymph nodes that pop up occasionally under my nose. These are a few small nodules under the skin that go away in a day or two. Fatigues still haunt me. Former military for 27 years (VN Vet in-country) and job another 18 years after the service. stayed in shape, 10K and half marathons runs frequently in my 30's to 60's. I'm in good shape, do PT three times a week and walk 3 miles 4 times a weeks at a brisk pace. With said, I am a stress monkey-type A) that I believe impacts me and condition.
Therefore, I believe you can go into remission from CLL, but not fully cured.
I will ask my oncologist at Moores Cancer Center, UCSD La jolla, CA. am I cured or can I be cured.
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halldp
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CLL patients with mutated IgHV treated with FCR have an almost 60% chance of being 'cured', if you consider remissions lasting around 15 years as a cure. Coincidentally, there's around a 1% chance of a spontaneous remission with CLL, also nearly always in those with mutated IgHV. When it comes to inhibitor drugs like Ibrutinib, we know that remission lengths aren't as dependent on the prognostic factors for the previous chemoimmunotherapy treatments. We also only have less than 10 years data and only a few years of data for combination treatments, so we really don't know if we can be cured with the newer treatments. CLL specialists are certainly very positive that a cure is imminent, so live in hope!
1) Mutated IgHV correlates with a more stable version of CLL, with a longer time to treatment and (at least with the older chemoimmunotherapy treatments such as BR and FCR), longer remission times. The newer treatments such as Ibrutinib, have largely eliminated that disparity.
2) Ibrutinib maintenance treatment totally changed the treatment paradigm. With older, limited time treatments, the depth of the response, i.e. achieving MRD negative, now U-MRD, correlated with the length of remission. Ibrutinib works so slowly that only around 10% achieve a deep response after 4 or more years. That has made it impossible to compare FCR and Ibrutinib without waiting the years to see what happens. The new combination treatments have now brought us back to the old treatment paradigm we think, but we won't know for sure for another 3 to 5 years...
Neil
without one of those new sequencing tests-on your marrow- for mrd status it's a guess. testing just the peripheral blood would not be definitive. a test on the marrow which gave a u-10 would be a good answer.
You and I share many common factors - I'm also Tri 12 UnMutated, but "only" 72 yrs old. I never got to Viet Nam, but was in the USMC reserves while in University. My "flavor" of CLL is very agressive and comes back quickly whenever I stop taking any of the newer non-chemo treatments (you can click on my icon to see my profile & treatment history). Fatigue, node enlargement and viral infections are what drive my need for treatment.
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I wish I had the slow growing Tri 12 Mutated type of CLL, that had gotten some patients more than 12 years remission from FCR Chemo, but I am thankful that the newer Non-Chemo drugs have given me 12 years so far.
Any evidence or statements that they would give a reduced intensity HSCT to someone over 70?
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And any data on the success % rates for CLL, vs. the incidence of GVHD or mortality.
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The data I recall predicts a 30% success and 10% mortality for younger patients on the full strength HSCT, so that would seem to be pretty poor odds of being cured and alive.
Another approach for me is trying to stay in good physical shape, walking, PT, and a frame of mind. Luckily, I have my wife and we are very close and my faith. Yes I have all kinds of weird things that happen to me. Could be I'm 77, maybe the ibrutinib 420mg daily and of course CLL clearly giving me compromised immune system. I try to manage that by boosting immune system by eating right, sleep, activity like walking and PT.
As Neil points out, a significant number of people taking fcr have likely been cured. Therefore, cure is possible for Cll.
The statistic that best predicted cure, or indefinite remissions for those who for some reason don’t like using the word cure, was how quickly someone reached mrd negativity. Those who got mrd negative with fcr were those most likely to have very long remissions.
People are getting deep mrd negative remissions very fast with some of the new therapies like venetoclax and ibrutinib. This includes people with mutated and unmutated Cll.
I therefore consider it quite possible, if not probable, that some of these people on the new combos will be cured. If fcr can wipe out Cll in some subset of people, why not one of the new combos who get some people mrd negative even faster?
One final thought. The end game doesn’t have to be cure. It’s survival. Someone might never be cured of high blood pressure, yet live to be 90 controlling it with blood pressure medicines. So it might be for some of us with Cll and drugs like Ibrutinib. People may live to and beyond their normal life expectancies by controlling their Cll.
I don’t know why some doctors stick to the mantra that fcr is incurable when it’s not. People with some solid cancers are considered cured with five year remissions. We have people approaching 20 yr remissions with fcr.
Your question was more specific, is there a cure for YOU? No one knows. I think it’s possible venetoclax could be added to your Ibrutinib and put you into an indefinite mrd negative remission. So yes, I think a cure for you is possible.
Unless your doctor is a prophet too, I don’t think he knows how long the remissions on the new drugs will be and if they will be long enough to be considered cures.
There is a cure for Cll, a bone marrow transplant.
And why would you not consider someone with a 20 yr remission cured? Because there is some slight chance their Cll might return? Everyone has a chance of getting Cll.
Most people are in their 60s or so when they get diagnosed. I think cure occurs where the progression curve stops going down and flattens. That’s what happen with fcr. The very vast majority of people who made it ten years out on fcr without progressing stopped progressing. The curve went flat.
If my Cll goes ten years without progressing after I stop all Cll meds, I am calling myself cured. I know there are a few who progress after ten yr remissions, but it is a very few.
Can you elaborate on what you mean regarding Ibrutinib? Do you think most people can remain at bay with just imbrutinib for at least 10 years? Just curious as this is what my Dr suggested he would treat me with if needed now. But in the same sentence he stated at my age I’d probably need at least 6-7 lines of treatment to live my normal life span. So in my opinion it’s a little contradictive as I’m 46 my normal life span would be 80’s and if I can live 30 plus years and 10 of those would be with imbrutinib that wouldn’t make sense. Obviously, I know everyone is different on that medication however based on what you mentioned of few progressing on imbrutinib. Thank you
70% of first line Ibrutinib patients remained progression free with a median range follow-up of 5 years. Why shouldn't we see a flattening of the curve with Ibrutinib as we saw with FCR, which incidentally happened at 7 years?
In the follow up study up to 8 years, pubmed.ncbi.nlm.nih.gov/322... "Estimated 7-year progression-free survival (PFS) rates were 83% in first-line".
We aren't there yet, hence the estimated PFS. So naturally your doctor can only base his forecast to you on what he knew. Given the"Median PFS was not reached with first-line ibrutinib." in the extended study report, I'd say you could consider your doctor's forecast as conservative, particularly if we see similar results on second and third generation BTKs that have a lower side effect profile. That's without considering how people will go on time limited new combination treatments with no long term bone marrow impact, which can happen with older chemotherapy treatments. They should also be at reduced risk of the longer term adverse events seen with Ibrutinib.
I agree with what Neil wrote. Your doctor knows a million times more than me. I think his comments on you needing multiple lines of therapy in the future are based on his assumption the future looks like the past. It might and it might not.
As you can tell from posts on here from some old timers, a lot of people have cobbled together treatments. Cll has proven it can work its way around some treatments, so we have to hit it with another one.
But that is not true for everyone. There are a lot of people who had only one treatment, fcr. You do not see many of them on here probably because they are functionally cured and don't feel the need to talk about their cll anymore.
As Neil wrote, the ibrutinib curve might flatten at 7 yrs. At some point if our cll has not figured out how to get around ibrutinib, it might never get around it. I think more likely venetoclax will be added for many, resulting in long remissions or cures.
I understand why you worry about this, but be aware you could be wasting a lot of emotional energy. Ibrutinib and venetoclax might be obsolete by the time you treat, replaced by even better drugs. Or and ibrutinib/venetoclax combo could cure you, just as fcr has cured many (at least for those among us who think 15 yr plus remissions are very likely cures).
I think what you need to know now is that you stand an excellent chance of living your normal lifespan with cll. There are no guarantees, no warranties you can buy. Doctors are not prophets. You might be one that takes multiple therapies, you might be one that I/V combo alone puts into an indefinite remission.
Cll is curable. The fact some transplants fail does not make Cll not curable. The fact some transplants work make it curable. It’s not a matter of being promising as you write, transplants are proven to curative for some people.
FCR cures people as well. If you want to consider 20 yr remissions as long remissions and not cures, that’s one point of view. I think most doctors would consider that a cure.
Even in scenarios where a transplant, FCR or Car-T patient is cured in most cases the patient’s immune system remains weak which requires ongoing medical intervention. I find this reality depressing.
At this point in time of treating Cll , car T and transplants are usually last or later result remedies so you are dealing with a Cll population who has very challenging Cll.
I think as to the fcr group that is functionally cured, I believe many lead normal lives. A depressed immune system doesn’t mean one that is not functional.
I think Ibrutinib and venetoclax combinations will do as well or better than fcr, this is my opinion based on what Dr Keating told me.
There are no free ride treatments for Cll. But I continue to think cure is possible with the newer treatments and I don’t think all those who are cured will need some life altering ongoing medical treatment. I am doing quite well just on a pill a day.
I hope you are correct. I am doing well, too. I haven’t had a cold or infection for many, many years. In fact I can’t recall the last time I was ill. I had my quarterly check up this past week and all of my blood counts were excellent. So much so that the doctor told me to stretch my appointment out to four months instead of three to keep me away from the hospital for a bit longer. All of that is great news but I am also keenly aware that my immunoglobulins are trending down. They weren’t checked at this visit but last time they were. At that time I looked at a graph of my my last three or four immunoglobulins results and it looked like a black diamond ski slope. My point is we are battling a progressive disease and it has a cumulative effect on our immune systems. Yes. For some the effect is more gradual than for others but the disease does havoc on the human immune system as do treatment protocols. I haven’t seen any medical papers about restoring a damaged immune systems but that doesn’t mean they don’t exist. I certainly hope someone somewhere is researching this topic.
There is some evidence ibrutinib restores part of our immune system, namely t cells.
And while our immune systems might not ever be fully restored, if we can cure our cll or get into very long and deep remissions, we are stopping or slowing the progression of our immune system worsening.
Ye sit can be depressing if you think about it. But in the same sense, I guess everyone can be depressed. Everyone is going to have their immune systems deteriorate over time and die.
I think if we eat healthy, exercise, get good cll doctors and throw in a little luck, we can live for a long time with good quality of life without cll dominating our lives.
Thank you both. You and Neil. I’m just trying to make sure of my choices as the last time my Dr suggested imbrutinib and he is most certain as it it CLL marginal zone lymphoma so I don’t want to get treated for something if the imbrutinib couldn’t help both.
That’s kind of why I “waste” my energy on all of this as it isn’t classic CLL and my Dr is fully aware. I’ve done a lot of research on both diseases so just trying to make sure I can make the right decision for myself since there is some issue on the correct diagnosis. So I find support here for CLL and other sites for MZL. It’s not all anxiety related. Just nice to here opinions of the CLL site and peoples experiences. My diagnosis isn’t cut and dry like most are diagnosed. So thanks for your input
Where you exposed to agent orange? I am a trisomy 12 mutated taking Ibrutinib now for 1 year. Old lab reports indicated I have had Cll prior to 2005. It has been very slow moving. My lab work and CT are all normal. Except my neutrophils aren't quite normal range yet.
I also had chronic low sodium. I wonder if it is related to Cll? I had pneumonia, legionaires disease. My electrolytes were really off the wall. I have never had any lung problems.
I was told in 2012 that I would probably see a cure in my life time maybe 10 years. I chose to believe him. Its amazing the changes that have taken place since 2012. 2013 Ibrutinib passed. Every year more and more drugs are coming down the pike. It is out of our control and doesn't hurt to think positive. I believe they will come up with a combo. Venetoclax sounds very promising to me.
Dogger805 - Yes - Often exposed to agent orange in areas as recognized by the VA where I patrolled on day and night ops. At 36 I had prostate issues and treatment. Yes for chronic low sodium that keeps me going to the ER as directed by doc's. I can name other symptoms, but not sure if its age 77, Ibrutinib (Imbruvica) or CLL. I know that with the help of Healthunlocked, my CLL support group at Moores Cancer Center UCSD and my wife a nurse (RN) of 37 years staying up helps and comforts me. I want to have the best quality and length of life as I can.
Ibrutinib will lengthen our lives however the side effects are tough to live with sometimes. I haven't had to go to ER and since they took my hydrochlorothiazide away it just has been on the low end of normal.
I am an Air Force brat and both my husbands were in Vietnam. First one Air Force and current one Marines. I asked because I heard sometime a go that there maybe a link between exposure to agent orange and Cll. I was exposed to the A-Bomb testing in Nevada as a child and developed thyroid cancer years later. Its been over 10 years since treatment so I am considered cured. I also had Cll at the time, however not noticed.
Its wonderful your wife is a nurse and will be able to understand and help you.
Fascinating to read your story. I am 81, also an in country VN vet. My physical symptoms very much similar to yours! I just finished a Gazyva series with very positive results. Oncologist now has me on a 5 year watch and wait. I am feeling much better! Good fortune to you Buddy!!
I uncovered a report from the Mayo Clinic which stated that no one had ever been medically cured of CLL. I also attended a webinar from MD Anderson last fall where the presenting doctor Berger felt that if you were in remission for 10 years, consider yourself cured. The doctors are largely are split on cured/not cured, just like split on chemo drugs vs. inhibitor drugs. Only time will tell and still largely dependent on your genics. I was 0% unmutated IgHV and had very aggressive CLL. I expect to get 3 - 3 1/2 years of remission before relapse, but my doctors would be first one to say that is a guess. Blessings.
In 3 1/2 years who knows what we will have to fight this disease im sure better meds and who knows if by then we'll have a cure. I don't know but for some reason doctors are very careful with the word cure.
Sharing some interesting information: I did 22 years army, my brother in did 30 years we both developed leukemia, I have Cll, My brother inlaw developed AML He was treated at TriStar Centennial hospital in Nashville, Tn. (I would NOT recommed them.) While we were there getting him treatment. The staff told us the 3 kinds of people they most often treat are farmers, landscapes, and MILITARY. I wonder if the Military or Veterans Administration have ever looked in to why the military is in the top 3. Besafe-- hoping for cure.
I was told there is no cure for CLL. You could be in remission, but not cured of this cancer. I went for a coloscopy as I was having colon problems and I have CLL. They found lymph nodes in there that are pre-cancer. All we can do is continue with oncologist. Maybe one day they will find a cure.
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