CLL - newly diagnosed

Welcome to Connect, @gerryk.
I'd like to introduce you to members who have been talking about chronic lymphocytic leukemia in the community. Please meet @ikampel2, @katemn, @rafe61 @KathleenWarren @chucky2g @lynnkay1956 @69holding @nellieblue @gmack and @eliejose. Some have been living with CLL for years without treatment, others have had some treatment. You can read more about their stories here:

- CLL treatment that concentrates in shrinking the spleen without undergoing chemo http://mayocl.in/2bU2rQx
- Chronic Lymphocytic Leukemia (CLL) http://mayocl.in/2bKKUx7

I look forward to further discussion about treatment options, including immunotherapy. I thought you might be interested in this resource http://www.theanswertocancer.org/description-of-cancer-immunotherapy/leukemia-immunotherapy-treatment

Gerry, is your oncologist suggesting treatment might be necessary soon or are you doing research for down the road?

gerryk, I am 70 yrs old and have cll. I was diagnosed 7 yrs ago. Some<br>people with cll never need treatment. My biggest problem as far as<br>symptoms was as a result of my ever increasing white cell count . It got<br>to a point where my white cells caused swollen lymph nodes and spleen. At<br>that point my Geisinger cancer doc said it was time to begin treatment. I<br>was able to get into a clinical trial. There were 3 random types of<br>treatment. The first was the current standard chemo route. I think that<br>drug is Bendamustine along with Rituximab. The second was several infusions<br>of Rituximab in iv form over a period of a couple of months while taking<br>Ibrutinab in capsule form daily. the third was just taking ibrutinab daily.<br>I was chosen for option 2. They list several possible side effects. For me<br>the iv could have been water. I had zero side effects. I take the Ibrutinib<br>daily and the only side effect I experience is an occasional dry cough. I<br>am very happy with my treatment. At this point my bloodwork is much<br>improved and my lymph nodes are not swollen. I was told another person at<br>Geisinger is doing option 3 and is doing well. There are over 500 people in<br>the trial. For any Vietnam veterans out there cll is one of several cancers<br>caused by being around Agent Orange. If you were there you are considered<br>exposed. GMACK<br>

GMACK<br>First of all, thank you so much for the response..... it will be most<br>helpful to me in managing my expectations.<br><br>Just to let you know, I am a Canadian thus, no involvement in Vietnam or<br>Agent Orange .<br><br>Ibrutinab seems to hold the most promising solution..... I met a Canadian<br>who was also in the clinical trial and he indicated that it saved his life.<br><br>I do have a "Marker" in my cell count which is known as ZAP70.(48%) I have<br>been advised that it progresses a little faster which may result in<br>treatment 2 years earlier.<br><br>I have also heard that chemo results in significant fatigue..... don't know<br>if you experienced that.<br><br>I feel OK now but recognize that will change over time.<br><br>Ibrutinab or possibly immunotherapy would appear to give me confidence to<br>deal with this.<br><br>Again, thank you so much.<br><br>Gerryk<br><br>*Gerry Kowalchuk*<br><br><br>

Gerry
You may never feel poorly. I would not trade my health with most 70 year olds. I play golf 3 times a week. I never received chemo. The Rituxin was a targeted therapy and had no side effects. I hope you do as well as I have. By the way my family doctor told me that if he was told he had to have cancer and had a choice it would be CLL.
Good Luck!
GMACK
Gary Mc Afee

My husband has recently been diagnosed with this cancer. I'd like to know or talk with some one who has had this or cared for some one with this diagnoses. My husband is not showing any symptoms yet other than high white blood cell counts which keep going up.

Welcome to Connect, @fonseca.
You'll notice that I moved your message to this existing discussion so that you can meet @gmack who was diagnosed with CLL just last fall. I'd also like to introduce you to @mikeyp @KathleenWarren @ikampel2 and @69holding who have experience with CLL and @katemn who's husband has CLL.

Fonseca, is your husband's care team recommending "watch and wait" treatment at this point in time?

@fonseca, do you have a first name .. makes it more personal! I can only speak from my own personal experience. My husband was diagnosed in I think 1995 or 96. Was working himself to death .. very stressful business owner .. getting 3-4 hours sleep a night. Was told he had Stage 4 CLL. So what did he do? Sold his business , divorced his wife of 36 not so good years, went on a long road trip by himself to re evaluate his life. Came home .. started working out .. eating in a more healthy manner .. lost weight .. took up golf and fishing .. re established old friendships.

When I met him a year and a half later .. I was not about to marry a man about to die so I met with his Oncologist .. was told he was back at Stage ONE!! That he would NOT die of CLL .. he would eventually die of an infection. Travel forward to 2014 .. we have a wonderful GOOD Oncologist (do your "due diligence and find a GOOD ONE!). My husband is now THIS MANY YEARS LATER .. now back at Stage 4 .. BUT there was a NEWLY approved Chemotherapy that our Oncologist said could be "potentially life changing" .. IMBRUVICA. My husband had tried a couple of other things SO when Imbruvica was approved .. my husband has now been on it since October 2014! As we have been told .. it is NOT a cure .. but is "life sustaining". He is doing wonderfully on Imbruvica .. some bruising so what the heck!

@fonseca, I have told you this long story .. Why .. because since I met my husband in 2000 .. we have had a WONDERFUL life .. have traveled all over the world .. had a glorious life! THAT is why I took the time to tell you our story! Our secret? DENIAL! Our attitude through all our health issues .. If it is NOT staring us in the face .. it does NOT exist .. we just go on with our lives and have fun! PLEASE .. you do the same! Life is what YOU decide to make it! Make it fun! Hugs to you both! Katherine and Richard

I have had CLL for over 6 years. Watch and wait is a common way to address this. My doctor told me some people never need treatment.In my case my white cell count kept going up to where I did need treatment. In 4 years my count exceeded 200 thousand and lymph nodes in my neck and under my arms were swollen. My spleen was also enlarged. At this time treatment had to start. I got into a clinical trial in which rituximab was given to me in by IV in I think 1 treatment a week for a month then I treatment a month for a couple of months. All that while and to this day I take I take 3 140mg tablets of Ibrutinib daily. My white cell count is down to 12 thousand, lymph nodes are no longer swollen and there have been no side effects. There was a group of people in the trial who only took Ibrutinib and I understand they are doing well. A negative about Ibrutinib is that it lowers your immune system.My immunoglobulin numbers are low. I have not had any problems related to this. I hope this helps you.
GMACK

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).

@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