Hi! Anyone who has had to stop and restart Ibrutinib because of major surgery. When is it safe to resume? Post op5 days ok?

[peneloope]

Stopping Ibrutinib surgery

[lankisterguy Volunteer]

Hi peneloope,-

For most of us our hematologist/oncologist usually prescribes the number of days before and after surgery for pausing Ibrutinib. What did your doctor say?

-

If you do not have access to your CLL doctor, and since Ibrutinib acts as a blood thinner, any incisions that have not healed well so far might be affected by the blood thinning, so you may want to have the surgery follow up team or a medical professional provide an opinion on whether the incision is weeping and may be negatively impacted.

-

Len

[peneloope in reply to lankisterguy]

Thank you for your message. I am leaving details of my situation so othersCan comment as follows: Please note I will be making decision with my hematologist tomorrow about what to do so if anyone has advise Pls share ASAP! Thank you.

I have had CLL for 11

Years and was treated with FCR back in 2013/14. I had to go back on therapy in Feb 2018 And started Ibrutinib.

I started full dose (3pills) and decreased to 2 Pills in 2019.

Doing Well and stable.

We discovered a large mass in lower abdomen attached to right ovary. Uncertain what it is but assumed ovarian neoplasm. (Waiting for pathology) Stopped IB to prepare For surgery and within 48 hours flu like symptoms Came On quickly,

(achy, feverish, horrible) followed

By severe blow up of nodes in groin under arm, neck etc... Checked blood and platelets dropped 100 points from a steady 224

Down to 124 and LDH shot up into 600’s. Doc put me on high dose prednisone (100mg) Monday and Tuesday and nodes Shrunk and platelets stayed stable.

Full hysterectomy and removal

Of the mass (6 lb mass) was completed Wednesday. I had 100 mg of prednisone the morning of the surgery and down to 20 Thursday, Friday and Saturday and Today supposed to be last

Day of steroid and then to start IB tomorrow. I have been taking naproxen and Tylenol since I left hospital.

Got out as quickly as possible From hospital because of Covid (3 Days, 2 Nights)

For pain i will have to stop naproxen today if I am to start back on IB tomorrow Which would be day 5 post op.

I am healthy, fit 50 year old and just want to do the right thing- so little Info out there on patients having major surgery while

On IB.

I have vertical

Incision and staples.

Considered major surgery.

(I am post menopausal for 8 years so That type of bleeding not an issue)

Feedback?

Thank you!

[lankisterguy Volunteer in reply to peneloope]

Hi peneloope,

Thanks for that info, BTW- it would help all of us if you could insert that info in your profile - healthunlocked.com/user/pen... then look for the white box upper right that says Edit Profile. Those details can go in the area where it now says Hi I am peneloope.Len

[peneloope in reply to lankisterguy]

Thank you so much! I tired my best to update a bit. Going on very little sleep here lol 😝 Hopeful to get some feedback. With ASH happening there may be less active readers but you never know.. thanks for the support! 💙

[lankisterguy Volunteer in reply to peneloope]

Hi peneloope,-

You did great on the update, I hope things improve for you quickly and you can get some sleep now that the steroids are stopped.

-

It must be scary to find and have that major mass removed, let's hope it is benign. The extreme reaction to pausing Ibrutinib after being on it for over 2 years seems unusual. Tumor flare has been reported by folks in the early days of Ibrutinib, but I suspect it is rare for patients approaching year 3. Was your ALC / WBC in normal ranges before the surgery?

-

I'm not certain whether Venetoclax would be available to you in Canada, but adding it to your Ibrutinib is a path being studied in the USA. Venetoclax is very effective in removing the remaining CLL cells, especially after several years on Ibrutinib - which may help resolve exhausted T-cells.

-

Len

[peneloope in reply to lankisterguy]

Thank you so much Len for taking the time to write. What an incredible support and resource you have set up here for our community. Yes, my labs were all stable before going off the IB. My oncologist has sent away blood work for testing as he too is wondering about possible resistance and if that is the Case I would later be changed to Venetoclax which is available here in Canada, thank God.

Today is my last day steroids. Tomorrow zero so will be happy to sleep tomorrow night.

I think getting labs done tomorrow to check my numbers before I take my first dose of IB will be in Order and will see if anyone else has anything to say.

My Oncologist in Winnipeg, Manitoba is legendary and I am confident in his care... at the same time, this is

an area with such little data and I have a beautiful son and husband to take care of... I must put in my time to research as much as I can and offer up anything I may find to help my doc make the best decisions for me! I am fortunate Dr Johnston allows me to be part of my overall care. I am blessed. Thank you again! Tess

[AnneHill in reply to peneloope]

I was told to stop 5 days before and after. I am having a basal cell carcinoma removed 13 Jan. I will have been taking ibrutinib for 19 months then. It will be interesting to see if I have any reaction. Its only minor surgery though. Anne uk

[peneloope in reply to AnneHill]

Thank you Anne! Good luck with your surgery. Best to you, Tess 💜

[Sepsur]

I was told to stop for 5 days before & after.

[peneloope in reply to Sepsur]

Thank you Sepsur.Did you have any issue when restarting and did your blood levels change when you stopped? Thank you!

[Sepsur in reply to peneloope]

This is for upcoming stuff. I have stopped in the past because of severe injury which was before I had restarted Venetoclax. It was a bit of a hair raising episode that worked out ok so far.

[peneloope in reply to Sepsur]

Ok thank you so much! Glad things worked out so far! Enjoy the day and stay safe & well. 💙

[gardening-girl]

peneloope, in 2016 I had a hysterectomy & oophorectomy and stopped taking ibrutinib 7 days pre-surgery and resumed taking it 7 days post-surgery. I did not experience the flu like symptoms, changes in lymph nodes or in CBC that you experienced. My Hb did drop to below 7 g/dL post surgery due to bleeding, and recovered slowly to 10 g/dL within about a month.

Please take a look at @AussieNeil's post from three months ago about Disease Flare During Temporary Interruption of Ibrutinib Therapy in Patients with Chronic Lymphocytic Leukemia ( CLL) pubmed.ncbi.nlm.nih.gov/328...

healthunlocked.com/cllsuppo...

gardening girl

[peneloope in reply to gardening-girl]

Thank you so much!! I will read your attachment shortly. I am so happy you did well with your surgery back in 2016. Best wishes to you 💜

[peneloope in reply to gardening-girl]

Thank you again for posting the article it was extremely helpful and reassuring. Today I will get blood checked and hopefully start back tonight on IB which will be day 5 post op. Ideally I would wait 7 as well but nervous because Of my flare up and I have ceased steroids... thank you again for your help! 💙

[Berrytog]

It depends on what surgery you are having. I had ten days off Ibrutinib for a hip but that may not have been enough as I got sepsis following the op

[peneloope in reply to Berrytog]

Thank you for your reply. I wrote about my surgery in my bio in detail if you are interested but I had major surgery- full hysterectomy with node removalAnd removal of large tumor in abdomen. I am day 5 post op and on the incision line appear to be healing well but will have blood work done this morning to see numbers. Thank you so much for your help and I’m so sorry about your experience with sepsis... you are a warrior! 💙

[mja511]

I've been on Imbruvica for almost 5 years. I had prostrate surgery in July and suspended Imbruvica 1 week prior to surgery and re-started Imbruvica 3 weeks after surgery. No change in any of my numbers - no side effects when I stopped or began again.

[64lusso]

My Oncologist said stop 7 days before and after and this was for minor hand surgery. He also said to check with him if the dermatologist ever recommended surgery which thankfully I haven’t needed.

[PaulaS Volunteer]

Hi Peneloope, I'm sorry to hear about your surgery and complications with the stopping of Ibrutinib. Good to know that the incision line seems to be healing well.

Other have replied already and I haven't anything more to add, but just wanted to wish you well for a quick and complete recovery.

Do keep in touch. It will be interesting to hear what you and your doctor decide today, about going back onto Ibrutinib 5 days after surgery.

Paula

P.S. I'm no expert but I would guess that the number of days to stay off Ibrutinib isn't "set in stone" and people's situations will vary greatly.

[peneloope in reply to PaulaS]

Thank you so much! I will definitely post next steps. We will be drawing blood a few times this week to see what happens there- this will be interesting and hopefully will help others! So little data.Appreciate this network and you taking the time to write. Power from

our community is healing!! 🥰

[peneloope in reply to PaulaS]

Hi Paula,

I went in for blood work yesterday and the numbers are excellent as follows:

Hgb 135, platelets now up to 261, neutrophils 2.2 and lymphs 5.5.

LDH not yet back

My platelets had dropped to 123 when I stopped the Ibrutinib so I am thrilled it is back up!!

I took 2 Tablets (280mg) Ibrutinib last night so 5.5 days post surgery.

So far so good!

Slept maybe 4 or 5 hours In chunks so am happy! Healing well and we will see what happens.. I hope to get blood labs again at the end of the week to see numbers now that IB is back and steroids gone.

Only meds right now, Tylenol. (Lots of it 😳)

Next up, staple removal the end of the week.

Thank you for your support! We are strong and anything is possible! 😊

Will post more as I learn 💜

[peneloope in reply to PaulaS]

Hi! Just found out the pathology from my internal nodes!!! Good news Hooray!!

“Lymph nodes did not show Richter’s but marked expansion of proliferation centres, consistent with ibrutinib effect”

Still waiting on pathology from mass attached to ovary.

Back on Ibrutinib successfully and healing nicely from surgery, day 7 post op!

Thank you for your support! 💜

[Kingfish6]

yes, week before & 5 days post. Maybe not restart with full dose for a few days.

[PaulaS Volunteer]

Great news, Peneloope. So encouraging to see those blood results. As you say, so far so good. Let’s hope the LDH is better too.

Interesting that your doctor agreed you could start Ibrutinib again at 5.5 days post surgery. I can understand them having certain guidelines for the numbers of days to be off the Ib, but I would guess every case can be considered individually, especially for someone in your situation who reacted badly to stopping it.

Good to hear the wound continues to heal well. You’ll be very glad to get those staples out at the end of the week! Should be a lot more comfortable after that!

Looking forward to hearing your next update.

Wishing you all the best,

Paula

[peneloope in reply to PaulaS]

Thank you Paula! The numbers are in... drum roll please.

LDH 361, with a slight increase in liver enzymes, which I assume is related to surgery.

I will go back for more blood work Thursday or Friday when I get staples

Out.

My great Doc James Johnston wanted me to wait ideally until day 7 but yes, under the circumstances couldn’t wait any longer.. I could feel the nodes coming back last night when the prednisone was leaving my system! Relentless!!

Things are looking good... thank you for the support and more news to come as it’s breaking!

Stay well and thank you! 💜

Tess AKA Penelope 😀

[PaulaS Volunteer]

Hi Tess,

Wonderful that there was no Richter’s seen in the nodes! What a relief. I hope you’ll get similar good results from the biopsy of the other “mass”.

Your bloods are looking great too. Hopefully the LDH will go down as you continue to recover from the surgery – especially after those staples are removed.

It must feel good to be back on Ibrutinib and know it’s doing its work again.

Thanks for sharing your story with us as it unfolds…

Wishing you all the best for your future healing…🙏

Paula

[peneloope in reply to PaulaS]

Thank you dear Paula for the amazing support. I feel blessed to be part of this community! (Not that Id choose to be but since I have the cancer, love the community that comes along with it lol 😂💜)

Will keep you updated! Feel free to check in.

Heading in shortly for staple removal and more blood draws- will be interesting!!!

❤️

[PaulaS Volunteer]

Thinking of you, Tess. I hope the staple removal went well (and the blood tests)

Paula

❤️

[peneloope in reply to PaulaS]

Hi Paula,

My numbers are looking great. My platelets are up to 352 and lymphocyte count coming down and sitting at about 6.86

My nodes are all gone now. 😊

(Remember my CLL started in my nodes and was SLL in presentation at diagnosis)

My LDH has been decreasing and is currently at 252. My AST was up to 138 and has dropped to 41. My ALT was 372 and is now 159.

Numbers are all going in the right direction.

Pharmacy at the Cancer Care in my city will look at putting in stricter monitoring when patients go off IB for procedures and surgeries...Monitoring with simple blood testing would catch the numbers going wonky! I don’t want anyone to suffer like I did with the Ibrutinib flare up!

Pls feel free to Check in anytime

Take care and stay well,

Tess

💜

[PaulaS Volunteer]

Hi Tess,

That’s great news! As you say, everything going in the right direction – what a relief.

It would be good if the message was spread more widely, re stricter monitoring when patients have to stop Ibrutinib (for whatever reasons). Sounds like your local Cancer Care is going to do that, but we all need to be aware and proactive if necessary.

Several folk here have had unexpected problems when stopping IB, and the medics still have a lot to learn re dealing with this.

Are you still waiting for biopsy results?

Thinking of you,

Paula

🧡

[peneloope in reply to PaulaS]

Thank you Paula.Yes, more awareness needs to be made. I am on the board for CLL CANADA and our Chair Raymond, has plans to

Share my story with members. If you are not already a member, it’s easy and free to join-‘just sign up online!

I am waiting for my pathology, yes. Apparently the pathology will take up to 4 weeks but my appointment is scheduled for December 31. If results are in earlier, they will call me in!

I am doing well back on IB with all nodes back down. I go in for blood draws tomorrow. Hopefully my lymphocyte count will be back into

Normal range as well as the LDH and other liver enzyme numbers. Thank you again for your kind messages and thoughts. 💜

[peneloope in reply to PaulaS]

Hi Paula just to let you know all blood numbers are back in the normal range! I amStill waiting for pathology but am relieved my numbers are good!

Take care

Tess

[PaulaS Volunteer in reply to peneloope]

Great news, Tess. What a relief!

Wishing you a similar good result from the pathology results..

Take care and enjoy your Christmas,

Paula x

[PaulaS Volunteer in reply to peneloope]

Hi Tess, Have you had the pathology results yet?Thinking of you,

Paula