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I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.
Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.
I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.
I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).
Replies to "I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring..."
@dougmann, thank you for sharing your journey with CLL. It is also great to hear you did not have reactions to your treatments with Rituxan.
You sound very knowledgable about your numbers, diagnosis, and treatment options. You mentioned that you transferred you care to Mayo Clinic in August of 2016 and plan to start treatment soon with ibrutinib. Do you mind sharing with the other members how you are currently doing and feeling with your CLL diagnosis?
Katherine
Thank you for your support. My first name is Gary and I am a 70 year old Vietnam veteran. I take the same drug your husband does and for about the same length of time. I am not having any problems and as part of my clinical trial I visit the fine doctors at Geisinger Medical Center in Danville Pa. every three months. When I first started ibrutinib I also had several infusions of Rituxan.
Gary
I am getting night sweats on and off, have a few mouth sores, including an emerging chancre sore, and a tender area on my neck right anterior lateral, which I suspect to be lymph node related. I have been on antibiotics 3 times since early March 2017 at roughly 6 week intervals. And I am losing weight without much effort. I continue to have some upper left quadrant abdominal pain, which was much worse in early March 2017 and gradually diminished after an especially painful episode on May 10, 2017, with unbearable pain that slowly diminished over the course of 90 minutes. It hasn't flaired up again like that again, and there has been very gradual improvement since then. I first had this problem in March 2016, which improved with Rituxan treatment, as described in my early posting. I suspect that this could be related to ischemia, and given the level of pain that I've had, I would like to identify the cause. My primary doctor contacted the head of the radiology dept at a medical center on the East Coast, who recommended a venous phase CT image of the spleen to rule out ischemic necrosis, ie, infarction. If the damage is great enough, even a non-contrast CT might suffice. However, there can be infarcts of the spleen that won't show up on the CT scans that have been ordered to date. I don't like mysteries of this sort. The CLL specialist at Mayo assigned to me also suspects the spleen and CLL play a part in this, and that further treatment of the CLL might be the remedy.
I question whether "CLL" is still an accurate diagnosis, because the estimated CLL/SLL cell count is under 5,000 almost one year after finishing rituxan treatment, and I am still symptomic. I had suggested to the CLL specialist at Mayo Clinic who is assigned to me that the CLL looks more like SLL, a variety lymphoma at this point, and there has been a corresponding shift in terms of treatment objectives, of treating the CLL because of b-grade symptoms with the aim of becoming symptom free. Even though my lymphocyte counts got above 150K per microliter at one point, I had been symptomatic for many years prior to diagnosis, with frequent infections and mouth sores, then heavy night sweats that triggered an investigation that led to the CLL diagnosis in 2014. Immuneglobulins levels were checked in 2005 because of frequent sinus and respiratory tract infections. There was no mention of enlarged lymph nodes and spleen on a chest CT in 2005. I recently had a PET scan, and treatment is being offered because of worsening symptoms and not because of critically low hemeglobin or platelet levels.
@dougmann, I am sorry I do not have more knowledge to impart other than for your mouth sores .. the ONLY two product I have found helpful .. you can probably find them cheaper at the drugstore but Amazon is an optin. Katherine
From my File Cabinet:
MOUTH SORES
1. Colgate Peroxyl Mouth Sore Rinse https://smile.amazon.com/Colgate-Peroxyl-Mouth-Sore-Rinse/dp/B00WOSEKP2/ref=sr_1_1?ie=UTF8&qid=1499301072&sr=8-1-spons&keywords=colgate%2Bperoxyl%2Bmouth%2Bsore%2Brinse&th=1
2. Blistex Kanka Soft Brush Tooth/Mouth Pain Gel, Professional Strength https://smile.amazon.com/Blistex-Kanka-Brush-Professional-Strength/dp/B01BL45LUC/ref=sr_1_2_a_it?ie=UTF8&qid=1499301193&sr=8-2&keywords=kanka+softbrush+gel
@gmack, good luck Gary .. The Imbruvica has ABSOLUTELY been life changing for my husband .. he golfs .. age 76 .. goes to all the grandkids sporting events .. yes he does get tired but being Stage 4 CLL we have an "Attitude of Gratitude" ! Keep on Keepin' on! Katherine
I'm 80 years young, was diagnosed with CLL in 2004 and was under Dr P. Kaywin watchful care for 9 years until I moved from Florida to Michigan and my condition care was taken over by Dr B. barthel of the Henry ford health system who continue watching the progression of the CLL until the summer of 2016 when a joint decision was made to do treatment because my spleen had reached a point of growth that it was pushing on my stomach. My treatment was for three monthly infusions including immunotherapy with absolutely no side effects. It has been nine months since we finished the treatment and I've gone back to live a normal life with no restrictions and only regular check ups with my oncologist and other health practitioners on a regular basis.
Nelson riveros
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@gmack, do you have a first name, more personal. I am NOT an expert in this field .. merely a spouse .. Unpaid Medical Secretary as I jokingly tell my husband. BUT he has been on Imbruvica 140mg 3 capsules 1x day for CLL since 11/12/14 and it has "saved his life" since he was told he was Stage 4 in 2014 .. PLUS serious diabetes. It truly HAS saved his life .. he is doing pretty well with periodic 6 months of IVIG treatment. I don't usually reply to this Forum .. but just wanted to give you a note of hope and support! Hugs to you! Katherine