Update from my Appointment

[Moonmyst]

Hi All,

I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned:

1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information.

2.My blood work is totally out of whack. Of note, my WBC is 130, with Lymphs hitting 117. No wonder I’m so tired and out of breath and sweating… however, my hemoglobin is fine, I’m happy to say.

3.My spleen is enlarged to about 4 cm below my ribs, large nodes in my abdomen, under both arms (over 3 cm) and in my neck (over 2 cm). But, hey, I’m told they’re “rubbery,” which is apparently a good thing! I’m so proud…

4.I gave up 8 tubes of blood for all requisite tests needed to move forward.

5.So… I have been advised to start chemo – 6 cycles of bendamustine and rituxan. I am scheduled to have a port placed next Thursday.

I am, quite honestly, feeling pretty overwhelmed. I know this is chronic, manageable, and non-life threatening but it has become very real very quickly.

That’s all for now but I’ll continue to post as things get moving. Thanks for reading!

Moonmyst

[cllady01 Former Volunteer]

Moonmyst, One step, one day at a time is difficult to manage when all comes at you so fast. I do hope the pace and the number of "things" to arise, will slow down for you so you can get back to a steady and manageable routine.

Keep us posted as you can, we want to be here for you. And, we will learn from you and at another time be seeking you to be here for us.

[Moonmyst in reply to cllady01]

Thank you for these gentle words of support and encouragement. I will continue to update and will be here to lend my support as well.

[HopeME]

Why not Ibrutinib or another novel agent? I started treatment at about your age and was given BR. My “specialist” “saved” Ibrutinib for second line. Most true CLL specialists would have started me on Ibrutinib and skipped the BR but I like you was overwhelmed and scared so I followed direction. If you gave eight tubes of blood they are still analyzing your situation but yet they have selected a treatment? I would strongly suggest you take advantage of the CLL Society’s virtual second opinion program. It’s free. It’s quick and some of the best CLL doctors in the US contribute. You should also ask your doctor why not Ibrutinib?

Best,

Mark

[NaturalWaze in reply to HopeME]

Just want to chime in and say I go to a top CLL specialist (Dr Lamanna) and one of the trials she is running is BR/VR. She also offered Ibrutinib as an option.

[HopeME in reply to NaturalWaze]

BR and Venetoclax? I’d be very surprised if she is offering straight BR to anyone but I’ve been wrong before.

[GMa27]

Ports are great. I had FCR and was uneventful. Hoping you have just as easy a time as I did. Make sure Rituxin is administered very slowly- not less than 4 hours. Ask them how many hours. 🙏💕

[Hidden]

Moonmyst, the port was great. The end result of 6 (2-day) cycles of BR was well worth it!

My last treatment was March 30, 2019, and so far my numbers are good.

My main advice, especially right now with COVID, is stay home while going through the treatment and for 3-6 months after while your immune system builds back up.

The main concern with a port is infection, as it provides a valved opening directly to your heart and bloodstream. You don't need to fear it just be very aware of it. I had to learn to sleep on my back with it, as I'm normally a side sleeper that will roll around in my sleep.

One very good piece of advice the head Oncologist gave me, "Eat healthy meals." I was eating lots of protein (eggs, meat, fish) and going for lots of vitamins and minerals from fresh fruit and salads.

Keep us posted and we'll be here when the cabin fever has you climbing the walls. 😎

[Smakwater]

It is encouraging to hear that you have confidence in your medical team.

Hoping great results for you Moonmyst!

JM

[Big_Dee]

Hello Moonmyst

Wish you the best going forward. I did all 6 cycles of B+R, had a few side effects first two cycles, but all side effects resolved in week or two. Almost 2 years post treatment and fell great. Went form 197K WBC to 18K WBC in 10 days after first B+R treatment cycle. Blessings.

[Patrick1960]

Hello Moonmyst,

First off I am sorry you have to go through this. It is very scary at first. At least you do not have to go through a stem cell transplant like I had to 5 years ago. That was a horrible time for me. I was diagnosed with Mantle Cell Lymphoma, very rare, similar to CLL. I was first put on B+R treatment cycle for 8 months. The first treatment did not go well as I had an allergic reaction to Bendamustine. I was treated very quickly and they managed to get it under control for the rest of the treatments. Then came the stem cell transplant. The whole process kept me of work and isolated for 14 months. Follow what Johne1 said and eat lots of proteins and get lots of rest. You will be very tired through all this. My cancer went into remission for 3 years then came back with a punch. I was then put directly on Ibrutinib, which was just approved a month before my cancer came back, and that started working right away and 2 years later I am still in remission but have to take this drug for the rest of my life. I would definitely ask your doctors if you can skip the Chemo and go straight to Ibrutinib. It comes with it's own side effects and everyone handles it differently but it's better then dying. I was lucky enough to have this drug covered by The Cancer Society here in BC Canada. It's cost $110K a year.

Keep us all posted as you go forward and just keep focused on the next day, week, month then year. Stay healthy and try to be as active and positive as you can.

All our hearts are with you.

[venk_46]

Hi,

I had taken 6 cycles of Bendamustin and Rituxan ,started in Nov 2018 after wait and watch period of about 5.5 years ,when my WBC touched about 250 k and Hb around 9 . I had lymph loads enlargement and also spleen enlargement . I had no abnormalities like 17 p deletion, No CD 35 AND ZAP 70 , and I am IGHV positive . I had no night sweats ,lost weight by about 10 % in 5 years

I had no major issues during 6 cycles of treatment.

My doctor followed the following .

In view of very high decease load of high WBC, he put me on steroids for a week and brought down the count of WBC before start of 1 st cycle

Started Ist cycle with a slow rate of infusion of , my blood counts fell significantly and BP

had fallen to low level with fever . These were very anxious moments for me . I was put on antifungal ,anti viral and antibiotic . I was given infusion of wbc and platelets.

I had no issues discharged after 5 days .

From Cycle 2 on wards I had no major issues and used to get dischrged after 2 days of watching.

I was given bone marrow boosting injections ( G CSF ) after every cycle

After the end of 6 th cycle iwas given IGg infusion to boost immunity.

I was kept on antiviral and antibiotics for about 4 months.

I finished my 6 th cycle in April 2019.

I had no issues and no medication of any kind.

I am aged 74 now and male ,live in India

[Siberunner]

It can definitely be a bit overwhelming at first but you will get through it. Prayers that it all goes smoothly for you.

[casanova]

Liking your team and having excellent two way conversations is a big plus. It can feel over whelming but one step at a time.

I had six cycles of B+R several years ago after disease progression again following FCR. I had no issues other than the initial Rituximab infusion (same when on FCR). After that no problems, Check that the Rituximab will be administered very slowly and have your call button ready if you start to feel at all "off". Should you react they will probably stop the infusion until you feel better and then resume more slowly. I had no lasting issues.

Wishing you well.

Maureen UK