Mayo Clinic Connect
I have CLL. I had 5 chemo treatments which ended 13 months-ago, and so far, I’m still in remission. Has anyone else here been in remission from
I have been diagnosed with CLL and neutropenia. Went to Mayo atwo weeks ago for their opinion on tratments of each. Still waiting for all analyses to be completed. Mayo did some tests and are now relooking at bone marrow tests done at U of M. So far doctors at both institutions have said I have early stage CLL. But I am not sure what kind of curve ball neutropenia throws into the mix.
I have CLL and thus far just in "wait and watch", but your information is very interesting. Thank you !
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I’m newly diagnosed March 2018 and in wait and watch as well. It’s helpful to hear the status of others and receive more education and suggestions. Thank you
Dear Adriano, I'm newly diagnosed with CLL in March. How have you been managing the fatigue so far? Hope this is a good day for you. katerose
Hello @katerose, thank you for sharing your diagnosis of CLL. Although the following conversation is about Lymphoma, I thought the topic might be relevant to you because it is about being in the Wait & Watch protocol. You may find it worth your time to check out the discussion and learn how other members are handling a blood cancer while in the wait and watch approach, https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-watch-wait-approach/.
Thank you Justin. The information you provided gives me a wider perspective and glimmer of how the challenges are being met.
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I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn’t be CLL related, because you don’t see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.
I had a partial remission for less than 6 months following a couple rounds of rituxan in 2016. I had to cut back my work schedule to 24 hours per week, 3 shifts per week in a corporate group home for patients with respiratory depression, mostly vent patients, early in 2013. For about 4 months in 2016 I was scheduled to work 24 hours per week at a nursing home as charge nurse (also administered all medications and treatments). The 8 hours shifts usually turned into 9 to 10 hour shifts with no rest breaks. I had to quit that job for the same health reasons that compelled me to cut my hours in 2013. Most of the time, my shifts at the group home were just as demanding, or more so, than the nursing home job in 2016.
I drove taxi for over a year in 2010 to 2011 and then for a few months in 2014. I could tolerate working up to 60 hours per week, in 12 hour shifts as a taxi driver in 2010-2011, but could tolerate only 3 shifts per week for a total of 36 hours in 2014. My average earnings after job expenses (lease and gas) worked out to $5 per hour in 2010-2011 and less than that in 2014.
Then I got a restaurant delivery job that lasted about 18 months until I landed the nursing home job in 2016. I tolerated working about 20-24 hours per week pretty well as a delivery driver, and I was never offered more hours than that with the first job. At the second restaurant delivery job in 2016, I ended up working about 30 hours per week and was noticing some adverse effects from that. Then I was involved in collision with another car on Jan 1, 2017. I had moderate to severe rotator cuff tears in both shoulders and had to quit driving and work with restrictions compatible with "light duty" jobs. I worked an inside job, making pizza and all other tasks assigned to non-supervisory workers until I took a medical leave for a surgical repair of the most damaged tendons.
I was seldom offered more than 20-24 hours of work per week doing inside work at the restaurant . My earnings in 2017 were too low to meet the criteria for "substantial, gainful employment," which means that I passed the earnings test to get a claim approved for social security disability benefits. Because of the quickly relapsed CLL and plans to start Imbruvica, I also met medical severity criteria under the non-hodkins lymphoma listing. At that point I finalized an application for disability benefits and a favorable determination was made within two months. Payment was delayed because of a pending work comp claim related to the auto accident. A settlement or hearing on the work comp claim is still pending. I started collecting benefits in February. I have been working 4 hour shifts as a pharmacy tech since January 2018. I started out at 20 hours per week, but had to cut back to no more than 12 on a regular basis due to complications of fatigue and activity intolerance.
I started Imbruvica on 4 October 2017. After 6 weeks, I began to have frequent, hard to treatment infections, seriously high blood pressure and worsening activity tolerance and fatigue. As a result, I had to reduce the number of hours that I was working and cancel surgery scheduled for repair of tendons in the shoulder than was less badly damaged in August 2018. When I started having serious side effects from Imbruvica, it was not yet clear to me how much the imbruvica could be implicated and hoped that the side effects would become much less severe within 6 months to a year. I was disappointed. The approach advocated by my CLL specialist was to throw medications at the problem, e.g. blood pressure medication and IVIG. I got started on a blood pressure medication, but refused the IVIG. I was on IVIG in 2014 to 2016, and it helped a little, but not enough. I met criteria for CLL treatment per IW guidelines for diagnosis and treatment of CLL, but was offer no treatment until I had symptoms of spleen ischemia in 2016 that could not be attributed to anything else. The spleen symptoms improved and went away while I was in remission, then resurfaced since the relapse. My b-grade symptoms and low immune globulin levels were originally attributed to Common Immune Variable Disorder and that treatment of the CLL wouldn't help. However, I am not aware that the diagnosis of Common Immune Variable Disorder was ever confirmed. However, I was told that the b-grade symptoms could not be caused by CLL because b-grade symptoms don't happen in "early stage" CLL. Yet I stopped the IVIG and was infection free for almost 6 months following the CLL treatment. Other b-grade symptoms also disappeared for a good while overlapping with the vacation from antibiotics. I think that the diagnosis of Common Immune Variable Disorder is not supported by the evidence, it is just wrong and it was used to justify not treating the CLL.
There are some things that I recently learned about imbruvica that I did not know when I started it. Imbruvica was initially investigated as an immuno suppressant to treat autoimmune disorders and is FDA approved as an immuno suppressant to treat chronic Graft Versus Host Disease. The targeted molecule, Bruton's Tyrosine Kinase is one of about 540 kinases found in humans, and it is expressed in all cells originating as a pleuripotent hemopoetic stem cells, except T-lymphocytes. BTK allows CLL cells to live long and proliferate. However, BTK also plays an important role in the maturation of cells that express it. If BTK receptors are fully saturated by imbruvica, it is not just the CLL cells that are impacted. So it is not entirely coincidential that bone marrow suppression and high rates of infection are associated with Imbruvica. Imbruvica is designed to function as an immuno suppressant. The manufacturer never got baseline data on infections for its clinical trials, and thus cannot confirm a causal link and can even claim that there is no evidence of a link thanks to the absence of baseline data. We do know that the intensity of at least some side effects from imbruvica dose related. Lowest absorption and bio availability occurs with taking it under fasting conditions. More than double the absorption and bio availability taken with or soon after a meal. One is simply instructed to take it consistently at about the same time of day. Can a dose greater than necessary to fully saturate BTK sites augment its anti-CLL effect? My guess is that it doesn't. Why is it that when Imbruvica is abruptedly stopped there is a rebound effect: CLL clones strive and multiple very quickly for a while. Why? Could that have anything to do with lingering immuno suppressant effects? Imbruvica irreversibly binds to BTK receptors. The immunosuppressant effect will endure for a while after Imbruvica is discontinued. Immune factors that keep CLL in check are weakened by imbruvica. Is full saturation of BTK receptors necessary or desirable when treating CLL? What portion of the BTK receptors must be occupied for CLL to have its optimum effect? One must consider both the direct effect on CLL and immune functions that keep CLL in check. There is no commercially available test for BTK occupancy and I've gotten the impression that the optimal degree of saturation of BTK receptors has yet to be determined. In Clinical practice, the optimal dose can only be determined through a process of trial and error, of adjusting dosage by theraputic response and side effects. Infections are not a problem for some CLL patients who take imbruvica, yet a big problem for others. Dosing is likely a factor, and someone who already has a fairly compromised immune system and history of frequent infections will be even more susceptible to have increased problems with infections while on imbruvica. I want to see if a dose reduction of imbruvica helps with side effects and remains effective in treating the CLL before considering going back on IVIG. In fact, if infections are bad enough for me to resort to restarting IVIG, I would rather try another treatment. As bad as imbruvica is, I suspect that chemo plus rituxan would be worse. Venetaclax plus rituxan looks promising, particularly because it is reportedly more effective than Bendamustine plus rituxan. I assume that that means that is not necessarily a forever regime. Venetaclax has immune suppressant actions similar to imbruvica, but hopefully less severe. If I switch to that regime, I will not be content to "wait and see" if serious side effects eventually go away on their own, as I have done with imbruvica. Maybe imbruvica will work just fine at the current dose, and I will stick with it.
Hi, it’s January 18, 2018. Are you still alive, Dougmann? I hope so! If so, how high did your WBC get?
As of today, my CLL is still in remission. Mayo is giving me monthly immuneglobulin infusions and I have been taking a couple of antibiotics for over 6 months which may help.
However, I have a bad cold that is getting worse by the day and Rochester is very cold. If there are any nurses or physicians out there, is my immune system going to be able to reverse things?
During imbruvica treatment my white count peaked in the low 40 Ks, absolute lymphocyte count 30 K plus, Prior to my first treatment, with Rituxan, lympocytes were over 150,000, lymphatic involvement very extensive, spleen enlarged with symptoms of ischemia. It was a question of treating the CLL or removing the spleen. After rituxan, lymphocyte count bottomed out at 1K, and rose to about 10K when I started imbruvica. On 2 occasions when I had clonal and total lymphocyte counts, at time of diagnosis and shortly after relapse (prior to imbruvica), the difference was about 1K per microliter, presumably consisting of normal b-lymphocytes plus T-cells, with T-cells predominating as they should. That would be a low T-cell count and a low count for normal b-cells. CLL is known to suppress T-cell counts as well as counts of normal b-cells. I've had serious problems with infections since about 6 weeks after starting imbruvica. However, I am resistant to starting IVIG again and want to see how things go at a reduced dose before re-visiting the issue of starting IVIG. I got very little benefit from IVIG when I was previously getting it for about 2 years. Imbruvica is a serious immune suppressant that is FDA approved treatment of chronic Graft Versus Host Disease. I am hoping that a dose reduction provides adequate relief from the immune suppressant features of imbruvica without rendering it ineffective as a CLL treatment.
Cindy, how are you? What is your status? My CLL has been in remission for 26 months. But my oncologist has told me, "It's going to come back." Of course, he's right. It's only a question of when. And as I suspected, he confirmed to me that it's much-harder the second time achieving a remission. Oh well! I'd like to find out what present trials Mayo is doing. I wonder, do certain things "hold back" research progress? I think you can guess what type of things would hold back medical research. At times, I think that the most "original" medical research might be done in a country like China, although that's a bad thing to have to say. How much do religious beliefs and laws hold back medical research? Or, maybe they should hold back medical research.
@usernameca, if you are interested in learning what clinical trials are out there right now, you can go here, https://www.mayo.edu/research/clinical-trials/, and search for any disease you wish to look for. I searched CLL and found a handful of results.
This week My Dr say’s I am in Remission from Dec 2017(147,000 to 6,200 ) Nov 2018 on Chemo -Imbruvica 420 mg. Day
Has anyone started treatment with green tea extract for CLL ?
Hello @mumzie, welcome to Connect. If you don't mind sharing a bit more, have you been diagnosed with CLL? I have not heard of treating CLL with green tea extract, is this something that your medical provider or hematologist recommended?
@mumzie, your post inspired me to do some quick searching about green tea extract for CLL patients, and the early research is promising on its ability to kill leukemia cancer cells. Here are a few resources that I found on this topic after you brought it to attention to the community:
Last week my VA oncologist says I am in Remission after 10 months on Imbruvica. Also, he was moving to Calif to be w/ his son. He was Oncologist for Albuquerque and S Colorado and West Texas. Going to be a great loss ! My Exposure to Agent Orange in 1970 has really taken a toll on my health.Insulin Dependent for 47 yr’s, Cornary Artery Disease (2 heart attacks + Heart Surgery) I am 71 old and have 2 precious Granddaughter’s and looking for more days with them. Open to all questions 💒
Justin thank u for the info on green tea extract research. The exact info I read , I am just not well learned in computer copying & sending. We will ask our hematologist for his opinion. Wonder where I could find locate them, maybe a health & v itamin sstore. My husband & I are 71 , we live in Michigan. Thank you for replying . Too funny my husband said he just found them available at Walmart on the computer. Take care,Mumzie
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