My wife is 13q mutated and started Ibrutinib as a first line treatment in January at 48 years old after 5 years of W&W
This choice was made over chemo because she’s a high risk of other cancers
The side effects were very painful and after a month, her hematologist decreased her dose to 2 pills a Day which became more manageable.
I forgot to say that she also has Lyme disease and after 9 month on Ibrutinib, all her numbers are normal but she feels that her quality of life has deteriorated drastically.
We asked to go down to one pill a day but her doctor refused and when I suggested he add Venetoclax to reach remission, he told me it was better to keep her on Ibrutinib forever.
I am not a doctor, or a CLL specialist but to know that you need to take a pill for the rest of your life with a poor quality of life is not really uplifting and I feel doctors should seek remission,even with a risk , over longevity if that’s what the patient desire
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Sergi
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Quality of life is also so important. Did the doctor explain why he/she would not use venetoclax? Would you think about a second opinion? There are many options fortunately and should be explored especially if there is a deterioration of her daily routines. I have the same markers and was told if and when that time comes I would probably be giving venetoclax as an option. I would ask for more of an explanation from the doctor maybe there is another reason.
The doctor said that ,since Ibrutinib is working well and his plan is to keep my wife alive for the next 40 years,he doesn’t want to try something that might fail and then having to go back to ibrutinib could not work anymore.
I’m not a doctor but it seems to me that you need a second and possible third opinion. Ibrutinib can cause Afib and other issues. If she isn’t feeling well on it, then she needs to go to plan B. There is still a Plan C and Plan D etc. Inrutinib is not the only drug out there.
Hmmm, I have those markers as well and have been doing Venetoclax and Rituximab without most of the nasty side effects of Ibutrinib. I will be on it for only a year.
I think might want to get another opinion as well, or at least get some answers about his ban on Venetoclax.
Sergi, not only are all Cll patients different, but top Cll doctors can be different as well with differing opinions.
Some very good Cll doctors think long term disease control is best for some patients. Not all patients tolerate combination therapy well. Other doctors, like my current doctor, want to wait before adding venetoclax to see how it does in other trials. In his view ibrutinib works well for me now and there is time to decide what drugs to add later.
You should seek a second opinion, as should anyone questioning their doctor’s opinion. I think it’s a matter right now over which reasonable Cll expert minds can differ. You might find a doctor ready to add drugs to your wife’s therapy now. Or you might end up with second opinion that staying the course is best.
I did want to respond to let you know that there are some very good Cll doctors now whose focus is on what keeps us alive the longest, not what gets us into remission fastest, two things that are not always mutually exclusive. If the quality of your wife’s life on ibrutinib is really poor, that’s certainly a good reason to seek a second opinion. I have my issues with ibrutinib, but so far I have been lucky the side effects have been very much worth the disease control I get.
If your doctor gets mad you are getting a second opinion, consider switching doctors. Everyone has that right and most good doctors are fine with second opinions. They should be. Good luck.
My doctor is in France and very open to suggestions
The side effects are tricky because Ibrutinib triggers Lyme disease symptoms and also the psychological fact being free of CLL would definitely improve our life
I live in New York but don’t have healthcare here but since I’m also a French citizen,my wife and I get coverage in France where all chronic diseases are covered 100%
As Lyme disease is named for Lyme, Connecticut, would a consult with an east coast doctor be possible - either a Lyme specialist or one of the big name CLL specialists? Hopefully, one of them would be familiar with the possible interactions. Your French doctor might be willing to consider the input, especially, of the CLL doctors at NY Pres., Sloan Kettering, or Dana Farber.
That sounds good.....Unfortunately last time I consulted a CLL specialist at SK , the cost without insurance was $1500 to tell me stuff I already knew from my French doctor
You don't say how your wife's quality of life has deteriorated. Could it be related to the interplay between her Lyme Disease and her CLL. I hope she is able to put together a team of doctors with doctors in both areas who will work together to find a way to help her feel better. We need more doctors who understand quality vs quantity of life.
I was told I had to take Imbruvica for the rest of my life and was experiencing horrible side effects to the point of having to take prednisone along with the Imbruvica to make it almost tollerable. I changed doctors. I went to my internal medicine physician and he was terrific and found a wonderful oncologist group for me. He has been a Blessing and explains everything so that I can understand. He told me that there are many options that are now available to try. He reduced the Imbruvicna dosage and I am now in remission almost two years.
I started venetoclax in February the result was 8 months in hospital from complications the medication was so strong it wiped out everything resulting in daily transfusions for blood platelets potassium magnesium nutrophils. I am now on Ibrutinib and finally out of hospital most of my numbers are in the normal range now except HB which requires weekly transfusions and I suffer from upset tummy daily which keeps my weight quite low and fatigue which means I need a wheelchair to go places.
However so happy that I no longer have a DNR order attached to me and was able to attend my daughters wedding last weekend when unfortunately I was unable to go to my sons or brother in laws weddings in the summer. I hope things improve for you soon.
I am a Dutch girl living in France. I have the same markers as your wife. I started treatment November 2018. I am participating in a blind trial and I got the BGB3111 (Zanabrutinib) part of the arm. I am doing very well on it with little to no side effects.
Where is your specialist located? Mine is in Institut Bergonie in Bordeaux which I highly recommend. Maybe you could go there for a second opinion if you are doubting present treatment. I would want someone on my team that also understands Lyme's disease.
Bon courage Sergi I wish you and your wife the very best.
Our doctor is in Montpellier at the CHU st Éloi ,he’s the head of Hematology at the hospital and participate in conferences on CLL all over the world but I still feel that a second opinion might be needed.
How are your wife's Vitamin D, vitamin B12 and red cell counts? Lack of either of those vitamins affect red cell count; I take vitamin D orally each day, and have b12 injections every 3 months. I am very anaemic, we got the red cell count up and banished the breathlessness by adding folic acid, but then it started to drop again, we tested vitamin b12 and found that was low. I had my first injection last week, cognition improved within hours, the other things, especially the breathlessness are slowly slowly getting better. Vitamin D was added a few years ago by a gastroenterologist who helping me with problems in gut biome after being on multiple antibiotic for many weeks after a sepsis. That was prior to CLL though. I hope you are able to find the right second opinion and the right treatment for your wife. If the crazy stuff wasn't happing in UK now, I would suggest several excellent places for 2nd opinion, but don't know how long you will have the rights as an EU citizen.
Her latest hemoglobin,paletets and white cells are completely normal after 8 month on Ibrutinib but she’s getting close to menopause,heavy bleeding,no bleeding...that might not seats well with the drug
The main with menopause is that it is hard to know whether or not a symptom is caused by menopause or something else. I don't know much about Lyme disease, but it may be there can be confusion about what is causing something - Lyme, CLL or Ibutrinib. I have other conditions, T2 diabetes, coeliac disease and chronic pain after an accident. So there is definitely guess work.
My oldest daughter also has Lyme, her disease has brought on significant seizures, thankfully controlled by medications, and a non life threatening heart condition called POTS, hoping she will outgrow. Occasionally she was sidelined by excruciating joint pain that her doctors felt was Lyme related. I researched anti-inflammatory foods and over time she definitely felt improvement. Now we follow an anti-inflammatory diet and have seriously decreased her incidents to maybe 2x a year. I am only suggesting this because she really had a very hard time and often told us that she didn’t live a very good life. She now eats a very restrictive diet, but she is now able to live an incredibly active and pain free life. I think she would say it was worth the trade off. I am seen, not yet in treatment, at Dana Farber and I agree with Yuck about what the rationale of thought is about Ibrutinib. Also, from reading lots of folks experiences on Ibrutinib, there seems to be a common thread of joint pain of varying degrees, most appear to dissipate in time. Wishing you and your wife all the best and I hope you get it sorted soon.
Our logic lately is a succession of events triggered Lyme symptoms:
Ibrutinib acts as a blood thinner so periods are very heavy so fatigue and anemia sets in and immune system is weak and cannot stop inflammation from Lyme .
Sergi - Howdy from Texas! I am 13q, SLL, unmutated and I have been on ibrutinib for 5+ years & doing well. About 2-3 years ago, I asked my doctor at M D Anderson if we should look at adding venetoclax to the ibrutinib to try to get to MRD-negative but he didn't want to jeopardize the success we were having with ibrutinib alone. My side effects have been typical - fatigue, muscle cramps, joint, muscle & tendon pains, brittle nails, frizzy hair - but no A-Fib, that I know of.
However, now my doctor is watching some fibrosis type abnormality in my lungs that they don't think is caused by the ibrutinib but ... the doctor said that if we have to change meds, there is a clinical trial to consider - CG-806.
Although my doctor was uncertain how well ibrutinib would work back when I started on it in April 2014, I can tell he is excited to have an effective drug. Initially, he was thinking it would only work for a couple of years. Now, it looks like it will work for the long run. I am 72 so I just need it to work 'til I get Alzheimer's, and then I won't have a clue.
I understand doctors don’t want to play with your life especially with all those new drugs but my wife is only 48 and she needs to get some remission plan in the near future
I joked about Alzheimer's but know it is no joking matter as my twin sister has Alzheimer's. It runs in my family so I'm trying to enjoy each day/year I have left and hopefully, neither SLL or Alzheimer's will interfere with my remaining years.
Keep us posted on your efforts to get your wife on combination therapy. With ASH2019 just around the corner, maybe there will be more encouraging results with regard to combination treatments that will be beneficial to all of us.
I would like to know more about specifically how she feels quality of life has changed while on IBN. I have been on it for six months and have some quality of life issues, but I am told they will abate, if not, we will try Venetoclax. I have had decent toleration of RTXN two times in the past, although I ended up with a surgical type of infection both times in my body and had to be opened up and drained.
I have to say that overall I feel life is not as good on IBN. Before I had a good number of great days, some bad but also about every 5-6 months I would crash and end up in the hospital for a week. They’d typically use serial doses of IVIG to get me back. Since my last crash last January, I have been on monthly IVIG and in April I started IBN. At first I thought the bone pain wasn’t something I could handle it was so bad, I was chewing Advil regularly, and Aleve at night. Some have said here that they could not take these pain meds, my doctor said yesterday he wasn’t concerned as long as we understood the additional bleeding risk, which I live with anyway because I have a severe case of ITP which keeps my platelet counts in the single digits.
While the bone pain started to subside i have noticed a fair among of lung issues, not quite pneumonitis which I have had a serious problem with before, but tightness. I have also felt that I had a constant heartburn which we have been trying to deal with using some OTC PPIs, but the consistent cough I have had because of the meds I am on has worsened under IBN and our theory currently is that my cough is made more severe by a worsened case of acid/bile reflux which itself was worsened due to gall bladder surgery back in 2017. So today, the cough is the biggest concern, although I am still having some hip pain which I think is left over from IBN.
My issue today is a facial tick because after a coughing spell which can be deep and often, I am getting these above the shoulders muscle spasm which is causing my face to contort and my head to turn to the left. It is the absolute wildest sensation I have ever had, but IBN is the root of it, unquestionably. My wife was concerned about Parkinson’s, but there is now way this isn’t drug related.
So after six months, I have had a ton of side effects, some of which have abated and some which continue. I have had a large reduction in WBC, my neutrophils have improved by a 5x factor and my bad lymphocytes have dropped from 81% to 21%. So I am getting some benefit. Do I expect more from a pill that Iswallow every day that costs $400.00, yes. Do I expect that it should be less of an impact on my system, I do but I have to realize that it will take some months to re-engineer my system with this drug to have significant enough affect.
We have agreed to stay on for 12 months, at which time we will either continue or switch to VTCLX/RTXN combo therapy. My clinical trial results on similar there pay were much worse than IBN for sure, but I was also taking Zydelig which I think has become the bad poster child for this type of drug.
I am open to discussion if anyone wants to talk through any of the specifics of this.
I too am 13q mutated. My doctor let me make the choice of ibrutinib daily fo the rest of my life or obinutuzumab and venetoclax combined. I am sitting now getting my very 1st infusion. Had one reaction all day. Severe nausea, but passed and rest of the day went great. I agree a pill for the rest of my life didn't sound like a good option given that I would probably suffer GI issues daily as well. I was totally down for 1yr and done. I'm expecting complete remission at the end.
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How remission is decided... 
Remission on Acalabrutinib and Venetoclax 
Complete Remission
Relapsed after 40 months in remission
