Diagnosed with CLL March 2022

[Jbeebe]

I was diagnosed a year ago after going to the doctor for frequent infections , night sweats and feeling very fatigued . My labs came back abnormal. I went through a series of tests after. I started treatment in November 2022 and finished January 2023. I did Bendamustine and Rituxan.

After my first treatment I was put in the hospital for a high temperature and very low wbc’s and neutrophils. I also had an allergic reaction to the Allupurinol they give you before chemo. They cut my bendamustine dose in half after that. Really didn’t have any terrible side effects.

I was placed on treatment because all my symptoms were worsening and my potassium level was increased. My spleen was also starting to enlarge.

Today, 3 months after treatment, I’m starting to feel my old self. I feel very grateful. I don’t know how long remission will be. I do know there are now so many options for treatment. Life is great!

[Pacificview]

You were in quite a cloudy rainy storm there for a while. But then you came out of it entering sunny blue skys. Reminds me of that song Johnny Nash sang, I can see clearly now. Congrats on making it through, not easy sometimes. I share your joy in a win.

[Jbeebe in reply to Pacificview]

Thank you! Life is a win!

[Jm954 Administrator]

Welcome to our group and well done on getting through your treatment as it's never easy.

Have a look at the Pinned Posts which have lots of useful information but if you can't find what you're looking for then ask here. There's usually someone who has experience of whatever you're facing.

all the very best

Jackie

[Jbeebe in reply to Jm954]

Thank you! It helps to hear from people experiencing some of the same things.

[Ptown]

Hello! It is so nice to hear about the positive turn around you have had with your health. It is amazing to think of all the individuals who have contributed their “smarts” to finding new treatments for our community. I hope you enjoy a beautiful spring. In support, Carolyn

[Jbeebe in reply to Ptown]

Thank you! I am really amazed at all the treatment options ant all the individuals that are finding new options! Very thankful!

Enjoy your spring!

[jonathan7176]

Your timescales are similar to mine. I was diagnosed and simultaneously flattened by CLL last March, remaining in hospital most of April. As soon as I was well enough I started acalabrutinib with an assortment of supporting drugs - now down to three - Acyclovir, Azithromycin and co-trimoxazole. It took me a few months, but my fitness and health have been pretty good. I'm glad to hear you're also feeling the benefits. It is a blessing.

[Jbeebe in reply to jonathan7176]

It sounds like you have been through a lot. I’m glad you’re doing well! It sure makes you see life definitely. I’m very grateful! It is a blessing.

[Soflajoe]

I was diagnosed in 2011. Received my first cycles of Bendamustine (alone) in2015 and again in 2020. There were no reactions; however it was time again just 6 weeks ago and this time it was bendamustine plus Rituxan combo. After the cycle I experienced night sweats, rapid heart beat, sleeplessness, chills, stomach pains, weakness, no fever. It’s been about 10 days since the cycle and I’m really feeling great. Blood looks good, but going for another CT in about 2 weeks to see what happening inside. Until then, I’m walking on eggs. Good luck to you!

[Jbeebe in reply to Soflajoe]

I hope everything goes well for you. It is very scary waiting on the unknown. Your blood work is good so hopefully everything else is. This is your third treatment it is a great comfort to know there are so many treatments out there

Maybe you are reacting to rituxan. After my treatment I would be tired and nauseous for a few days. I developed the worst heartburn. I’m a nurse. The scariest part to me was being immunocompromised. I had to take some time off work because of the risk.

Treatment definitely made me more energized. i definitely see life differently. I wish you the best!

[napa]

I had bendamustine and rituximab for six months of treatment ending in July 2021. The first session resulted in some hives, went to a port after second treatment, but no adverse results to my blood counts and remain good today.

[Jbeebe in reply to napa]

That is good news. I love hearing from other people and their experiences with this.

After my first treatment my WBC went from 124 to 1.6 and neutrophils were under 1. My counts have been in normal range since.

[skipro]

I am sooooo happy for you

Here’s to a long remission

God bless

Skipro