Have to share this episode of CLL ...Last week i posted about leg muscles problem and Stopping Ibrutinib , All answers were helpful ... Aussie Neil suggested Acalabrutinib and my Oncologist agreed .... I stopped taking Ibrutinib for 8 days awaiting my new drug .... but on the 9th day waiting for Acalabrutinib ...with my Rbc wbc hemoglobin and platelets perfect , I rapidly developed rather large lymph nodes (2hard marblesize and 1 soft 2times as large ) on my neck ... immediately texted my oncologist who said to restart the Ibrutinib and live with the leg pain until the new drug arrives ... now, 2 days later the nodes are a tad bit smaller and my apprehension has somewhat subsided . I thought I was in remission as the blood work was perfect a few weeks ago .. Thoughts ?
Stopping Ibrutinib: Have to share this episode... - CLL Support
Stopping Ibrutinib
All I can offer is that while one might technically in remission on ibrutinib, that doesn’t mean their Cll is not present and waiting to kick in once Ibrutinib is removed.
Outside of a clinical trial, one can be in remission if their labs are normal and they have no swollen nodes. With chemo, these remissions are durable. With a btk inhibitor like ibrutinib, the remission might last only so long as you are taking the drug.
Inside of a clinical trial, you usually have to have an mrd negative bone marrow biopsy to be considered in remission. Few people on ibrutinib alone achieve mrd negative remissions.
Hopefully your problem gets solved when you start acalabrutinib. You might want to talk to your doctor about adding venetoclax to your acalabrutinib. That would give you a better chance to get into a durable remission that would continue after you got off your meds.
Thanks Cajun , Aussie Neil also suggested Venetoclax ... I will ask about it at my next meeting ... it has never been discussed.......thanks for your insight into remission
Someone who is on a clinical trial with Ibrutinib and Venetoclax I agree 100%
Cajun,
You don’t need to be MRD- to be considered to be in remission or to have had a complete response. There are several criteria to be met, but MRD- is not one of them. But, that being said, MRD- in bone marrow generally indicates a deep and durable remission.
I was right at cusp of MRD- in bone marrow (.01%)after 6 rounds of BR and have had completely normal blood work with no enlarged nodes (had a CT scan 18 months ago to confirm) for 4 years. By any clinical or objective standard I’ve been in remission, but was not technically MRD-.
KC,
Great to see you posting, my BR compadre although I’m on ibrutinib now.
Jeff
Hey Jeff,
I've become more of a lurker than a poster these days. It's not that I'm not interested in what's happening in the CLL community, it's just that I'm trying to remain more balanced in my internet activity. I'm sure once I start relapsing and have to face treatment, I'll focus more. When that happens, I'm hoping to get onto one of the clinical trials that attempts combo therapy for limited duration.
I hope ibrutinib is working for you.
i looked at your prior posts. You seem to have started and stopped ibrutinib several times?
Hey I voted , yes I have been off and on several times and it always worked getting me great blood tests but now I understand that the CLL is lurking in lymph nodes waiting for A chance to re attack ..
Hi fish,
You seem to have a bit of a checkered history with Ibrutinib and I can’t see anything about a BMB having been done to establish a UMRD status (which as Jeff has said is more unusual with Ibrutinib as a mono therapy anyway).
You have a history of swollen nodes appearing or reoccurring even with normal blood levels it seems from the 2.5cm node they found on your clavicle.
I’m wondering if whilst you’re bloods are good, there’s still active disease in your nodes. As Dr. Koffman’s reminded us in a post recently, ‘CLL can relapse in the nodes and still be U-MRD in the blood and marrow.’
Has Venetoclax ever been suggested to you especially in combination with a BTK? Sounds like you need a ‘heavy hitter’.
Was this additional issue of the auto-immune disorder ever pursued? I’m wondering because I have severe joint and muscle problems but I have established arthritis and a strong possibility of the auto-immune condition Sjogrens Syndrome.
In your case I’m wondering if enough diagnostics have been carried out to establish exactly what is happening because it is a tad unusual to have nodes come up so rapidly and in significant size in that time frame. When did you last have a CT scan?
What’s your chromosomal profile as a matter of interest?
Hope you get some answers and relief from this soon.
Newdawn
Hi new dawn , auto-immune was driven to death a while ago with no indication of a problem ...CT scan was 6 months ago . No problem ... History major so will look up BMB and UMRD when I get home and will respond ... thanks for your input , the General opinion that I should discuss Vento and Acalabrutinib with my oncologist is well taken and will happen at my next appt . In the meantime acalabrutinib will be taking over ....I will reread your post later today and respond more eloquently.. I really appreciate everyone’s input , it all goes into my thinking ... thanks for your help ...
Hi this is A P I have been on ibrutinib for four & half year with great results until last year 2019 when I developed sepsis in April then again in August I have been taken off ibrutinib for five months now only symptom i am experience is extreme tiredness back to see my constant 24th of this month hoping bloods are good
Hey guy, Acalabrutinib was suggested by Aussie Neil and Newdawn ... when I approached my oncologist with the idea (as i was having many problems with Ibrutinib after 6+ years) he said lets try Acalabrutinib ,,, now 2 months into Acalabrutinib (100 mg daily) minor problems like rashes and itchy.. hope you get the same results ..
Hi there, I agree with Newdawn in that I'm surprised that with 6 years of Ibruitnib (even given its been on/off) your nodes came up so quickly after stopping it.
I hope acalabrutinib works well for you and doesn't cause the leg pain that you have experienced with Ibruitinib, let us know.
Jackie
No leg pain with Acalabrutinib , rashes (tretonin controlled ) and itchiness (cortisone controlled )..2 months later
It's wonderful that your oncologist is so receptive to your input; however, with your chequered history of peaks-and-troughs in developing nodes it <may> be that a more targeted investigation of your CLL status by a blood-cancer specialist is now warranted (rather than by a general oncologist who certainly will have far more knowledge of solid-tumours than blood-cancers).
My thinking is that a hematologist with a specialty in CLL might add valuable insight into what looks like your pattern of on-again, off-again control of your disease. Involving a CLL-specialty hematologist doesn't require you to leave your oncologist; rather, it would involve a consult with another specialist to add to your oncology team. Another pair of eyes might see something that you and your oncologist-partner have so far missed.
Caven
On ibrutinib you are in partial remission that´s is why you take it for life .... for now
your oncologist should have probably told you not to stop or maybe lower dosage until Acalabrutinib arrived.
My Dr , when asked what would happen if i would quit Ibrutinib ,told me that the disease comes back quickly ..... Let us know how you react to the new drug
3 days after resumption of Ibrutinib , lymph nodes are getting noticibly smaller ..Awaiting Acalabrutinib with baited breath.
After 2 1/2 years my oncologist d/c’ed because I developed atrial fibrillation. He says the afib will cease when my system clears out the Ibrutinib. He will be doing flow cytometry every 4 weeks when I have IVIG to monitor lymphoma activity. He will start treatment (probably V) if I become symptomatic.
The same thing happened to me when I was told to stop taking Ibrutinib for seven days before a colonoscopy and endoscopy procedure. My consultant was on holiday and I got a call from the hospital to stop taking the drug. That was on a Friday. A couple of days later I experienced a period of irregular heartbeats, palputations, and a lymph node in my lower jaw began to swell.
On the Friday I had the Endoscopy procedure and back to the hospital on the Saturday for the Colonoscopy procedure. By this time I couldn't walk too far without feeling faint. Lying on the trolley waiting to go into the room I felt okay again. When I got back home my heart was pounding away and I was getting terrible chest pains. I rang the emergency service and an ambulance arrived. They did a quick cardiograph test and said my heart beat was irregular and I was blue lighted to A&E. They first tried to get my heart rhythm back again but in the end reverted to administering a drug that stopped my heart and then it started back in rhythm again. On returning home I started the Ibrutinib again and after a few days the swollen lymph node settled back down and I've not had any further problems.
My Consultant was none too pleased when I told her of my experience and told me never to stop taking the drug abruptly again.
I too suffer with thigh and calf muscle cramps. I'll ask her about Acalibrutinib on my next routine visit.
Wow , thanks for the input
I had terrible terrible leg pain and cramps. My oncologist put me on 400mg of magnesium and that helped tremendously! I have been on the magnesium for over a year. I still get occasional leg cramps but NOTHING like it was. I am also on Ibrutinib since April 2018. I didn't read all the back posts so sorry if my input was already tried. 
Also on 400 mg magnesium but no help on leg cramps , I suppose they could be worse ..
Oh dang. That helps me so much. The other thing that I do when I do get them, is drink tonic water. That seems to be a middle of the night thing. Especially if I have become dehydrated at all during the day. Lots of water and Quinine helps!
Be aware that the FDA considers that the risks associated with the use of quinine for treatment of leg cramps outweigh the benefits:
webmd.com/pain-management/n...
Quinine carries extensive warnings about possible side effects, including:
- Potentially serious interactions with other drugs
- Abnormal heart rhythms
- Thrombocytopenia, a blood platelet disorder that can cause hemorrhage or clotting problems
- Severe hypersensitivity reactions
All of these risks are particularly relevant to anyone with CLL, particularly if taking BTK inhibitors, such as Acalabrutinib, Ibrutinib, Zanubrutinib and TG1701
Neil
Interesting, however, I will certainly still take a few sluqs of tonic water in the middle of a painful cramp. Works very well for me with no effects other than the cramp subsiding. I don't take Quinine pills, just whatever is in the tonic.
While there isn't a lot of quininie in tonic water, it's the ingredient that gives tonic water its bitter taste and can be enough for individuals sensitive to quinine to be at risk of serious side effects. While the FDA considers that the amount of quinine in tonic water is safe: healthline.com/health/quini...
this is what can happen in those who develop sensitivity to quinine independent.co.uk/life-styl...
Here are more cases of patients who were specifically using quinine to prevent leg cramps
ncbi.nlm.nih.gov/pubmed/169...
Dr Terry Hamblin, the CLL specialist who discovered the importance of IgHV mutation status, appreciated the challenge we can have with painful leg cramps and felt quinine was safe enough to take, but perhaps it would be safer to take magnesium tablets, given the above. I found doing so worked for me, but I found out I had to take it regularly and take a higher dose after being very active to stop them becoming really painful on waking up the following morning,
Neil
I'm on 400mg magnesium which works great! However sometimes there is a bad cramp at night (such as last night in the shin). A few glugs of tonic and such relief almost instantly. Benefits so outweigh the risk for me. 😊. To each his own tho for sure!
Perhaps we need to have a new, separate post on this topic. I've heard that magnesium creams and sprays can provide near instant relief. A limited topical application, rather than systemic, would be the better way to go.
Yes it’s a hot topic presently Neil. I take 375mg daily but the recommended daily amount is more like 320mg. I find the cramp eases if I double the amount but am wary of doing so. I’m wondering if the magnesium sprays and creams are absorbed systemically thus further increasing the recommended daily amount?
I continue to suffer horrendous cramps especially but not exclusively at night.
Newdawn
400 mg of magnesium dead no help , tonic put me in hospital twice with heart problems , but a few drops of CBD oil (no THC) applied topically got rid of cramps in 5 seconds .. 500 mg , expensive but who cares if it works
Worth another try fish. I did try it but it had no effect previously and it was from a reputable source.
Newdawn
I've used magnesium spray. Somewhat effective also.
My wife took Ibrutinib for about 14 months. That whole time she had horrible, horrible leg and calf cramps.
One though on muscle cramps, are any of you taking mineral supplements calcium /magnesium and potassium possibly also? Additionally there are trace mineral liquid drop supplements from the great Salt Lake that I add to my purified water daily.
Stretching muscles (especially legs and if you sit a lot ) at least 2 times a day is very important. If you feet are cold at night sleep with lose socks on and or also you can heat the foot of your bed with a heating pad stuffed down under the sheets. Compression socks that go up the entire leg to under the knee may help. There are various compression strengths so a do has to weigh on this. However, bombas just came out with a line of very light compression...be sure to also move your feet. toes, and massage.
Just thoughts DLC DDS
With regard to the term remission I think there is some confusion in its use.
After diagnosis I was given FCR chemo in tablet form for six months and at my next meeting with my consultant she said I could consider myself in remission. That was in 2008. Nearly eight years later my CLL began to show above the radar and was told there was a drug I would be taking to enable my immune system to combat the CLL. I was no longer in remission and 12 months later when NICE finally agreed to fund Ibrutinib I felt the relief almost immediately. I was able to live a normal life again but after my episode related above I do not consider I am in remission because I require a drug to stabilise my condition and without it CLL rears its ugly head again.
I think you’re confusing the terms ‘cure’ with ‘remission’ Wessex. Remission is a temporary (but sometimes long lasting) diminution of the severity of disease and in CLL usually requires the pretty definitive result from a bone marrow aspiration/biopsy which is a incredibly accurate in detecting 1 cell in 10,000 and more. Outside of trials, many CLL’s are told they are in remission from the results of flow cytometry or just by normalised blood results.
There is the term ‘partial remission’ too but in CLL the holy grail is UMRD which means undetectable and can lead to remission over a decade or more. In some people who achieve this, their CLL does not lead to the need for further treatment.
It sounds like your initial FCR treatment effected quite a good remission but as with all CLL treatment at the moment, none can be said to definitely offer the elusive, total elimination which would constitute a cure.
Regards,
Newdawn
I have had to stop Ibrutinib a number of times over 5 years for illness or medical procedures and my nodes do also start to enlarge. They have always returned to normal on resumption of the drug.
Thanks , I needed that
I went through about two years of severe leg and abdominal spasms with Imbruvica. I found that an awful slug of Apple Cider vinegar each evening before bed was very helpful. They have since resolved and are very rare.
another insight , love em , thanks
Wish I could help fish61. I had a similar outcome with lymph nodes and tumors, 30 days being off Imbruvica my lymph nodes blew up to triple their size before hand. Went back on and within two weeks they were vastly improved, Now, my side issue is the Afib. My oncologist (ironically based on my research and prodding) took me off Imbruvica again a week ago; he has strong suspicion that it is the direct cause of my Afib. Just have to keep experimenting I guess. Please keep us posted. Thank you
Pharma co’s just give you the info they have acquired , it is up to us to figure out what works .
I've been on Ibrutinib for a few years. I started to get leg cramps (mostly calf). I find that over the counter magnesium supplements makes it (mostly) go away. That might help. I hadn't associated the cramps with my IBT, but maybe they are connected.
Been on 400 mg of magnesium for a year and the pain is Still there , but thanks for your input...
magnesium depends on source and how you absorb it... I take more and from several sources Life Extension makes the one I take. I also take some additional mag citrate with my calcium Hope you are also taking calcium etc. I eat all organic produce and my diet is about 70% plant based. I eat a huge variety of vegetables and big salads. RAW Nuts too have minerals ..hope this may help
DLC DDS
A while back my blood work showed no cancer cells, so oncologist did another test and determined disease still in my bones. My understanding is ibrutinib works just on the blood, but check that with a doc.
Agree
Actually Ibrutinib works on CLL cells in several ways, It primarily inhibits the "stay alive and clone yourself" messaging from the CLL B Cell Receptors by blocking the BTK enzyme. That disrupts the messaging that keeps CLL cells in their supportive micro-environment first in the nodes and spleen, so they spill out into the blood, where they die. About 66% of those on Ibrutinib see their lymphocyte count increase in their blood tests for a few months before it begins to fall for this reason. It takes a lot longer to work on CLL cells in the bone marrow - years in fact. Only about 10% of those on Ibrutinib reach U-MRD after 5 years.
Neil
Thanks Neil , another question.... since all blood tests are in good to excellent zones... is the fatigue that I feel from the CLL or a side effect of the Ibrutinib ??? And How can I tell ?
Given you still have active CLL, it's probably causing your fatigue. Did you notice any improvement in your fatigue in the first week off Ibrutinib?
Right , I had fatigue , not as much as I have now but definetly fatigue and weakness ... it is mainly the CLL ... thanks for the info ... why didn’t I think of that ?
Increased dose of Ibrutinib to max of 420 from 280 . Got swollen, red face, swollen lips. Lower dose of I did not control disease. Dreading trying to ramp up to Venetoclax. Want to try Aca!abrutinid also, but apparently have 17p deletion which is an indicator for Venetoclax.
Hi Doris,
I’m not certain where you are located, I am on a phase 2 trial of Acalabrutinib, Obinutuzumab and Venetoclax at Dana Farber in Boston, Massachusetts and I am both TP53 and 17p deletion.
Sandy
It is 9 months later , on Acalabrutinib , leg pain and cramps are non existent but I have noticeable weakness in my legs that no amount of conditioning or vitamins D , B12 , Magnesium or iron can help , I need a cart to lean on while shopping at Costco ,... Aussie Nell suggested it is probably caused by the CLL ....any current thoughts ?
Off ibrutinib
Ibrutinib or Acalabrutinib
Ibrutinib / Imbruvica?
stopping Ibrutinib
