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Posts (7)

Nov 29, 2018 · I have very difficult muscle twitches on imbruvica. Any advice? in Blood Cancers & Disorders

I have been taking ibrutinib for over 3 years now and I have no problem with muscle twitching. I do however get muscle cramps in various parts of my body. I am not sure if is related to the drug. The cramps usually last for only a minute or so.

Aug 12, 2017 · CLL - newly diagnosed in Blood Cancers & Disorders

I have not changed my diet but here is some info that might offer some comfort. I am 70 and have had cll for 7 years. My white cells increased every quarterly checkup until they reached over 200 thousand. At that time my lymph nodes and spleen were swollen. I went into a clinical trial and take ibrutinib daily. No more swollen nodes and my white cell count has gone down to 12 thousand as of yesterday.This drug is now FDA approved. You may never need treatment but if you get to that point that drug worked wonders for me. Good luck to you.

Jul 4, 2017 · CLL - newly diagnosed in Blood Cancers & Disorders

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.

Mar 11, 2017 · CLL - newly diagnosed in Blood Cancers & Disorders

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.

Sep 6, 2016 · CLL - newly diagnosed in Blood Cancers & Disorders

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!
Gary Mc Afee

Sep 5, 2016 · CLL - newly diagnosed in Blood Cancers & Disorders

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

May 21, 2016 · CLL treatment that concentrates in shrinking the spleen without undergoing chemo in Blood Cancers & Disorders

@nellieblue I have had cll for 71/2 years. In Nov 2014 I started in a clinical trial. At that time my spleen was enlarged and my lymph nodes were swollen. I was given a targeted therapy in a series of infusions (no side effects) called rituximab and since then three pills every day called ibrutinib. The swelling in my spleen and lymph nodes went away. My white cell count goes between 12 to 14 thousand. At one point before treatment it was over 200 thousand. I am not sure if these drugs are FDA approved.I hope this helps you. gmack