CLL Support Association
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NEVER GIVE UP!

I’m a 71 year old female of Irish decent. I was diagnosed with CLL in 1991. It remained in remission until January 2017. My oncologist started me on IMBRUVICA (3 capsules, 140mg each) in March 2017. The only “side effect” was bone pain in the beginning. Dr. H assured me that it was temporary & was in fact a good thing, an indication that the medication was working. It took a couple of months to see improvement in blood levels. I now have CBC’s every 60 days & continue to show improvement... I might add that in January of 2009 I was diagnosed with end-stage Non-Hodgkin’s Lymphoma, totally unrelated to the CLL. My vital organs had started to shut down. In the doctors words, “We’re not sure we can pull you out of this”, so the family was called in. After dozens of blood transfusions, I started R-CHOP Chemotherapy, & here I am 9 years later! I guess the moral of my story is NEVER GIVE UP!

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I love hearing story’s like yours. Regarding your long life with this. I hope you get another 27 years

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Wow maoowen46, a great story from a positive frame of Mind! Thankyou

Marc

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Thank you for sharing. You must be an incredibly strong person.

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It is always great to hear positive stories, thanks for sharing. Strong personality do help, I believe.

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You are a warrior!

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You’re a strong woman with a great attitude. Thanks. Love your story. Sally

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Hi Maoen

What is RChop chemo.

Pls excuse my ignorance

Regards

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It’s named after the drugs used in the treatment

R - Rituximab

C - Cyclophosphamide

H - Hydroxydaunomycin

O - Oncovin

P - Prednisolone

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Best Wishes maowen46...just curiuos, do you know what your markers are? I'm Trisomy 12 and unmutated was diagnosed in Sept of '07 and have been on W&W ever since but treatment soon..

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Nice to meet you.. same age same ethnicity.. but you have been on the CLL highway 7 years longer than me.. well done!

I too had a Richter's transformation to DLBCL.. with a 6 months prognosis... that was 6 years ago... my RCHOP and radiotherapy, in-fact cured me of that lymphoma.

I could not agree more.. NEVER GIVE UP... !

~chris

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Hi, Chris! Nice to meet you, too! I’ve been Lymphoma-FREE almost 9 years! ... No problems with the CLL since it reared it’s ugly head other than fatigue, which is hard for me because I’ve been very active all my life. I actually pushed myself too hard about a month ago & ended up in the hospital for 4 days with Hypoxia! My Dr., who has a great sense of humor, told me to start taking naps. He said “... they beat the hell out of the proverbial dirt nap”! lol

Stay in touch!

Maggie

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Funny... I get vasovagal syncope, same result..dirt nap...

mayoclinic.org/diseases-con...

The Doxorubicin just ruined my heart... but it is still working.. had an ECG yesterday.. 💓💓💓😄

Did you have DLBCL... diffuse large B cell lymphoma?

~chris

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Lucky for me, mine was just a one-time occurrence. I over did my exercise routine by walking 4 miles instead of my normal 2, causing a shortage of red blood cells carrying oxygen to the vital organs. I spiked a fever, had a seizure & ended up in ER... MODERATE EXERCISE!!!

After 5 months of R-CHOP, no damage from doxorubicin for me! Maybe the blood transfusions helped ward off the damage. I was at the hospital every other day for weeks. Rcv’d more than 100 Units.

I’d have to get out my old medical documents from 2009 to answer your question about DLBCL ... I spent a lot of time on the Internet researching when I was first diagnosed with lymphoma. I was stressing myself out & driving my doctor crazy with questions… He finally told me “Stay off the damn Internet!” At that point, I even stopped reading his reports & started focusing on the positive. I have an appt tomorrow. I’ll ask... much easier than reading medical reports! 😁

What do they do for your syncope? What restrictions, if any, does it put on you? How are you feeling?

Maggie

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RCHOP effected my heart... so heart meds like Xarelto, Bisoprolol, Ramapril, etc... help prop things up...

I recently acquired aspergillosis and that severely limits my physical activity... but its improving...

Vasovagal issues, I learned my triggers... fasting blood draws at 8 am, and waiting in long lines at checkout counters... so I'm very adept at queue jumping... I throw a coughing fit... they send me to the front of the line... 😜

The alternative is I pass out... my doc said I need to learn to do head stands.. but I feel that is also a good way to get a dirt nap or worse LOL... 😴

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WOW! You’ve got a lot on your plate! I love your line-jumping technic! I may borrow that one from you & use it myself. lol ... My only other health issue is a recent diagnosis of pre-diabetes. Doctor sent me to Diabetes Awareness classes at one of the local hospitals to learn how to control it with my diet. Unfortunately, my will power is pretty much non-existent. ☹️

Standing on my head would put me in traction! Chiropractors would be fighting each other to get my business! Grocery stores, etc. would probably not appreciate using that tactic in the stores. 😜

Stay positive! Attitude is 90% of the battle!

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Good for you ...it gives all of us hope! Thank you.

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