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CLL Support Association
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After one year on Ibrutinib, BEST NEWS EVER!!

My husband has had CLL for over five years now, and was on Wait and Watch for 2 years before everything went really bad: fatigue,fevers, 160,000 white blood count and multiplying faster and faster, terrible infections. He started out with a chemo therapy: BR and that crashed all systems. He only had 4 infusions and then they said no more! He had zero neutrophils and was severely neutropenic for nearly 6 months. He has been on Ibrutinib for a year now, and after a CT scan last week and lab work today, his doctor said he was in REMISSION!! All labs were in the normal range, and his lymph nodes in his neck, stomach and lower abdomen had returned to a normal size. Praise God and thanks to all the prayer warriors out there. I know he is not cured, but we just got back from an Alaskan cruise and this was the best news ever! Take heart everyone!

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It is the science that keeps your husband in remission.

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yes, it is the fine research of amazing doctors and the courage of all those who have been in trials that have paved the way for the rest of us. But our faith keeps us grounded, grateful, and with hope.

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Congratulations! Wonderful news.

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First thing the oncologist said was Wow,Pete you look good

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Great news, the Ibrutinib magic works again :)

Jackie

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Our favorite nurse even hugged my husband

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That's lovely and makes the care feel very personal. What a great nurse :)

Jackie

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Such fantastic news kathy! I may need to have some chocolate to celebrate! ๐Ÿ˜Š

Newdawn

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what a good idea! I'll join you! :)

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Me three! Congrats Kathy

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Me four,

But only fruit and yogurt in fridge. Sigh no chocolate ๐Ÿซ

Kathy great news ! Hope I get the same results from Ibrutinib.

Colette x

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I believe you will Colette....keep the faith! This is a game changer for most of the CLL warriors....

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Thank you Kathy. I am.

Colette ๐Ÿ˜Š

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I have some dove bar almond brittle dark chocolate I would share with all of you!

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Its nearly 11.00 pm. Im reading this and thinking its a bit late to hunt for chocolate. I hope I get good news when I eventually get started on the Ibrutinib. I had to wait 4 weeks after having a blood test for hepititis as I am having ivig. Results gave a false positive and samples of every batch of immunaglobulin had to be checked.

In the meantime I had a problem with a spot on the back of my neck bleeding. Its a basal cell carsinoma. Being removed next week. I have the ibrutinib but cant take until my neck is sorted.

Im praying I get good results. This forum can give hope. Anne

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My husband has two malignant melanomaโ€™s and a basal cell carcinoma, got them all taken care of and his numbers are in the normal range. Have hope, Anne

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I will be glad when everything is sorted. Did your husband need stitches in the basal cell carsinoma?

Im glad he is doing so well.

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My husband had surgery on all three of those skin cancers with stitches on all three.

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Fantastic news! Gives hope to a lot of us ๐Ÿ‘๐Ÿค—๐Ÿ˜˜

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We are over the moon

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So to read this good news! This is super.

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We are doing the happy dance

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Hey Kathy!!!

good nooz. The Alaskan Cruise........your husband qualifies as great nooz :)

S.

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OMG Scott....the Alaskan cruise was so wonderful...complete with whales, bears, eagles, and sea otters....not to mention good food and too many cocktails!

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You're killing me......man I so need a vacation from my life :0 It shows you had such a good time though.....that is great great!!!!!

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Scott....your time is coming...I know this to be true...then you will post and we all will be jealous; love you man!

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You always say nice things to me. Will you be my #1 CLL Girlfriend all day tomorrow?

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Always and forever

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I am so envious. Im praying that by this time next year the prospect of a holiday like that comes closer. Iv booked to go to the coast for 5 days. Its about 2 1/2 hours drive. Trouble is its a week after I have the skin cancer on the back of my neck removed and then starting the Ibrutinib. I hope I feel ok. May have to stay near to a toilet if my tummy plays up.

Bad timing! Anne uk.

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Just drink lots, lots of water and I donโ€™t think your tummy is going to feel bad at all

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I have wondered how Im going to drink enough when we are travelling and staying in a hotel. Even though we are staying in uk I havent worked out how to drink enough when we go out. Im finding if we go shopping I dont drink enough. We have a coffee but thats it. My daughter has a box that plugs in and can be used as a fridge. We could use that to chill water in the hotel. During the day Im going to need bottles of water. Its such a lot of water. Anne

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Super news Kathy. Long may it continue.

Sue

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Thank you so much.....we are staying in the moment and enjoying the wonderful news..

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Wonderful news! Congrats!!

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Yes, sweet lady.....this is great news for all of you!!

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Hi Kathy, great news.

Ann

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Thank you Ann...after the last couple of months, we all needed good news!

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Love ibrutinib and Alaskan Cruises! Awesome news. - Mindy

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oh Mindy......we are so blessed....and we had such a wonderful cruise with so many animals and so many beautiful views...

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We were on our first Alaskan cruise on Disney Cruise Line last year during this exact week and it was the most beautiful scenery I could ever imagine. This diagnosis has been an expensive one for our family because we are all about the bucket list adventures now and enjoying every minute!

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I know what you mean.....we are not waiting around to do things anymore!!

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Iv been to a few places in the last few years.We are in uk and this last year has been miserable. My numbers were going up and the hospital didnt want me to travel. They didnt know about me flying to Lanzarote with my family last May. I didnt realise there was chance of dvt. As you will know its hard to make plans and fatigue stops many things. Its only recently that I have started to hope. I need another bucket list.

You have wonderful news and it gives us all hope. Anne uk.

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Fabulous news.

Peggy ๐Ÿ˜€

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Thank you Peggy....and thank you always for sharing your joy and positive thinking to this whole group...

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Hi Kathy

You've just made a lot of people very happy !

Thank you for sharing.

ygtgo

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We all have had some hard news to process, so happy to uplift this wonderful group with our news

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We all love good news!!! Thanks for sharing!

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So understand that....I was so down for a couple of months after losing such wonderful people....so when we get good news....we must celebrate and share it.....

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Panz, how is the Ibrutinib working good still?

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I am so very happy with where I am on Imbruvica 420 and with the IVIG every 4 weeks I am the best I have been I 30+ years. I just love life and I have energy now I forgot what that ever felt like. I have been in Imbruvica 420 since January 5th of this year!

I did have a few minor side effects for about 3 weeks but it has been clear sailing ever since. I now feel so good I will be able to handle whatever comes my way if need be.

In the meantime I am trying to calm my brotherโ€™s anxiety and apprehension as he will be starting Imbruvica 420 the end of July or the first of August. He has been on Watch and Wait about 4 years....all counts are normal except WBC being 170,000 but the nodes in his neck are getting more involved and rather painful....this will be his first treatment and I am just so excited for things to get under way as I just know it will serve him well.

How are you doing? Has the bout with diarrhea gotten any better? I didnโ€™t experience that side effect as I am on such a strong IronRx the two seem to balance each other out. Very nice chatting with you. I would love to know just how you are doing.

๐Ÿ™๐Ÿ˜๐Ÿ’•โ˜˜๏ธ

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Good to hear. I am ok still on watch and wait WBC still stable. Diarrhea went away after a couple days. I think i just caught a bug or something.

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This is very good news....may it continue for a very long long time!!! But please stay in touch!

๐Ÿ™๐Ÿ˜๐Ÿ’•

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When you were diagnosed Panz, all they had back then was Leukeran?. Does the Ibrutinib work better?

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That is not easy to answer. Leukeran was the only oral chemo they had back in 1989...they had a few IV chemo but those were on the harsh side. Leukeran served me well and they were amazed that it continued to do the job for me. I had 10 sessions in 27 years off and on as needed....each time it would take a little longer to get the number back in line so last December when it was time to treat it was decided that it was time for a change as there were now so many out there. So January 5 of last year I started the Imbruvica 450 and I just love it. I had a few minor side effects all lasting just a short time. I feel the best I have felt in years.

How are you doing?

๐Ÿ™๐Ÿ˜๐Ÿ’•โ˜˜๏ธ

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Are you 13q Mutated Panz, i can't remember?

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Panz has said in previous posts that she doesnโ€™t know her chromosomal profile.

Newdawn

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To be totally honest I donโ€™t really know, however, currently I really donโ€™t care what I am as if it isnโ€™t broken donโ€™t fix it. That could turn on me and if it does we will have to deal with it. Mine is a strange situation for sure but it is working for me. My original doctor was very nerdy, young, intelligent person and he got so fed up with the slow process for treatments for all Leukemias and so left his practice and went into research about 20 years ago and he turned me over to a nerdy colleague of his....this was in MI where I live in the summer....then about 15 years ago we started being โ€œsnowbirdsโ€ which means we go South for the winters.....we chose FL so that leaves me with a nerdy older guy that I just love who treats me while in MI and then while in Florida I am being treated by a teenager doctor who is with the Florida Cancer Specialists. It is a great arrangement as I asked that they work together when I needed treatment and they have done that at every step of the way and to my knowledge have never disagreed on how I should be treated and that is a huge confidence builder!!! So I feel I have the best of both styles.๐Ÿ™๐Ÿ˜๐Ÿ’•โ˜˜๏ธ

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What age were you diagnosed Panz?

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One month short of 47 years.

๐Ÿ™๐Ÿ˜๐Ÿ’•โ˜˜๏ธ

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You sound so lucky

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I'm so happy for you and your husband, Kathy!! This is wonderful news!

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Thanks so much.....our sons and their families were giddy!

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Great news, Kathy. Thanks so much for sharing. So glad you enjoyed the Alaska cruise too. Maybe you'll share some photos with us. :-)

Paula x

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I do have some lovely shots....just have to get more savvy on how to post things!

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We can't put photos in replies to posts, but we can put one with any post that we ourselves have started.

You could add a photo to the start of this post, as it was you who started it. Scroll to the bottom of your original post, and select "More v" then "edit".

Your post will then appear on a different screen, at the bottom of which you'll see a box that says "Add photo". Select that, and a browser screen appears, where you can select a photo to post, then click "open" If your photo is a very big file, it's best to resize it first.

It will take a while to appear on the HU page, but when it appears, you then click "post" and the deed is done. I hope it works for you...

Looking forward to seeing Alaska,

Paula

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Thank you. Just posted a glacier pic

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WOW! Amazing place! Wonderful photo! Thanks for posting!

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Thanks so much for posting! Good to know about others progress along the way! Congrats!

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Thanks so much....this group has lifted us up many times in the past, and we are always interested in hearing about their stories.....

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Glad to hear of this terrific news - celebrating with you! It is a magical trip for people to sail up to Alaska and sounds like you had a wonderful time.

Sandy Beaches

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Sandy, so magical indeed..........when we went into Glacier Bay, it was unbelievable....we also kayaked in Juneau. Saw 5 whales, and sea otters and so much more!

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AS all has been said, I will just echo, Thank God for Science ๐Ÿ˜Š (try to support both camps)

UK Sparky

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Thanks Sparky.....I love your ability to say something so simple.....so well!!

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Great news.

jenny uk

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Thanks Jenny, we are wrapped in a cocoon of happiness right now!

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So happy for you and your husband!

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Thank you Rose.....the sun is shining a bit brighter this week!

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Such Happy news, donโ€™t know you but was moved to tears. I have been on Ibrutinib for 3 years after CLL and stage 4 Lymphoma and itโ€™s heartening to hear lovely news. We are the lucky ones on Ibrutinib enabling us to have more time with our loved ones. Cheers, Viv

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Oh yes, Viv.......we were devastated when he was first diagnosed, and worried about the length of time we had with family and friends....but now, we just try to appreciate every moment we have!

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Wow! Great news!

Enjoy the Good Health!

Glad you had a wonderful vacation

You both earned it!

Be well!!

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Thank you! Being a caretaker is hard, but I have a wonderful man at my side.....and it is fun to tell people "good news"

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So very pleased for you and your husband, what a relief this must be, I hope that he gets stronger and stronger and remains in remission. My husband was diagnosed just over a year ago and on W/W and he has kept well but a routine blood test he has been recalled to do another due to the liver function readings, now I am worried, we are being optimistic as he feels and lives well but now must wait and see. Good luck for the future.

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Dear opal, thank you so much for the good wishes. My husband was the picture of health as well when we found out he had CLL....there were many setbacks, but we are so blessed by all the advances and new treatments available. Try not to worry too much ( I know, it is hard....my husband says I worry enough for both of us!) What helped me was finding out as much as I could about CLL, and joining this group. Please let us know how the liver function reading shows!

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Hi Kathy, thank you for your kind reply, my husband thankfully is a very positive person and outwardly he shows no concern although he must feel anxious inside. We wait and see and yes, I will let you know the outcome, it's nice to know people care x

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Wonderful news!!

And it brings more hope to all of us who are on W&W. Someday soon they are going to be able to cure us all.

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Yes, Carajito......my doctor said 2017 was a pivotal year for CLL research....and with combination therapies, my hope is that a cure is on the horizon!

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So happy for you! Hoping for a very long and uneventful remission.

Sandy

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Oh, I agree with that.....very uneventful and very long!!

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Great news, enjoy your lives ๐Ÿ‘

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We are trying to do just that.....planning another trip!

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Love hearing good news like this!

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I know! So much heartache in the world, it is good to be able to do the "happy dance" once in a while!

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Fantastic news!!! So lovely to read this post this morning. My husband has been taken ibrutinib for almost 4-weeks now and so far so good xxx

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Hooray for Ibrutinib!!! Just make sure he drinks a lot of water ---I am constantly putting a glass in front of my husband!

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Very happy for you both.

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So good to hear about news like this! Awesome!

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It is awesome! And I was so happy to share good news with special people!!

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What great news to come home to, long may it continue, God bless, Terry

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Thank you Terry.....we had many people praying for this.....

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I was on Ibrutinib for 6 years. Your husband will likely need to keep taking it to retain the remission for as long as possible.

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Yes, our doctor told my husband that----but I love to hear that you were on this drug for 6 years....my husband is 11q deleted, so I don't know how long it will last....but for now, we are enjoying his good health

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I believe 11q responds very well to Ibrutinib. Can't guarantee anything, but this should cruise him out enough years that the next big thing will be available, and Venataclax is already available. I am now on Venataclax and better depth response than Ibrutinib. Good thing for many for Ibrutinib is my success, in getting 6 years. But I did not fail. Just took the chance to go off. Well, yes, it came back fast. So now on Venataclax,, now I will rely on the results of those in the Murano study to guide my future.

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This is such wonderful news and so uplifting for those just starting treatment. Thank you!

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You are most welcome....and there is so much hope!

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Glad everything went good,god bless. Thanks for sharing. Grumpy

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Dear Grumpy.....God bless you as well....we are enjoying celebrating this---my husband has been golfing this week.( his favorite summer activity) ...and this news made the week even more special

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Great news!!!! I love success posts with my coffee. What a great way to start the day. With God all things are possible.

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I agree......Lots of prayers of thanksgiving went up! I do love my coffee as well......best part of the morning!

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So very happy for you both!!

Bless!

Mimi in GA

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Thank you Mimi......so nice to share with the HealthUnlocked family!

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Excellent news , congrats and god bless! Thanks for sharing the great news . Just a few questions , how old is your husband and will he have to take a low dose of ibruntnib for a long time ?

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My husband is 66, was diagnosed 5 years ago.....2 years only on Wait and Worry, and is 11q deleted ( not the best news there.) He will have to continue on Ibrutinib until it no longer works for him.....his doctor is not ramping it down. He will continue at 420 dosage until severe side effects as well. God bless you as well!

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Thatโ€™s some great news , thanks for sharing !

are they going to be using A combo therapy at all ? Usually start with Ibrutinib and end with Venetoclax. also is he taking acalaibruntibib or ibruntnib?

I think acalaibrutinib is the Gen 2 version.

Did he modify his diet at all ?

All the best and

God bless

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This such great news and so good for our community to celebrate ๐Ÿพ๐Ÿ’ƒ๐Ÿป

I am supposed to start Ibrutinib in July and feel a bit apprehensive about side effects.

I have high blood pressure, which took some time to get under control and had a heart attack 4 years ago.

Your husbands successful treatment is going to be my shining light.

Thank you for sharing and long remission๐Ÿค—

Dana

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Dana, My best advice is to drink loads of water and eat well and exercise while on Ibrutinib, My husband had some mouth sores, ( he does a salt water mouth rinse) , and he has had some minor joint pain that comes and goes....He has a great sense of humor and a great attitude....I think that helps! He did not do well on chemo, so Ibrutinib is an answer to prayer!

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Great news about your husband Kathy! That cruise must have been amazing. I always wanted to do one up there. My wife and I are afraid to do cruises now though with all of the medical problems that you hear about on them.

Chris

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Chris, we are very careful about hand washing and even take a mask for the airplane in case someone is coughing around us....we have been on about 8 cruises (all over the Caribbean) and have had no problems....Alaska is now our favorite cruise! So wonderful!

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Kathy,

I have only done one pleasure cruise and that was to Bermuda back in 2008. I did plenty of cruising during my twenty years in the navy, but that wasn't nearly as fun...:)

I wore a mask the whole way to Hawaii and back about 5 months after completing FCR. That was pretty uncomfurtable after a while, but well worth it. A week in Hawaii did wonders for my recovery...:)

Chris

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Targeted drugs are working for many. Letโ€™s hope he stays in remission for many years. Iโ€™m on watch and wait and hope they I can one day get I+V.

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I agree.....I think I and V is going to be a game changer. Best of luck!

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Happy News!!! So glad you got such a great report.

Alaska Cruises are awesome.๐Ÿ˜€

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We are very happy.....and we have been on 8 cruises, and Alaska has been our favorite!

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We have been on 14 or 15 and Alaska was our favorite so far. We at looking at doing the Panama Canal but not sure how 14 days would be.

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We are looking at the Boston to Montreal one....possibly in the fall when the colors are beautiful. We had friends who did the Panama Canal and LOVED it!

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Great and encouraging news.Thanks for posting this uplifting result of Ibrutinib.

Miller1960

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I am doing cheers for Ibrutinib.....some minor side effects for my husband, but well worth it

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Congratulations. Here is to many more cruises to come.

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Yes, nanamoore...we have been on 8 cruises so far, and are looking at the Boston to Montreal cruise (going on the St. Lawrence Seaway). Thanks for the good wishes

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That is the best news. Enjoy it and stay healthy

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We are doing our best to stay healthy......he has had a few infections lately, but with his neutrophils in the normal range, he is beating them

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So heartening to read your news. Celebrate away! It's your time.

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Yes, we are celebrating.....my husband gave up booze (except for a few glasses while we were on our cruise) while on Ibrutinib, but he has raised a glass of nonalcoholic beer this week!

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Wonderful!

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Thank you so much! We really could not believe it when our doctor said it!

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Wonderful news

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Thank you .....now prayers for a LONG remission

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