Follow ups when on Ibrutinib

[VLAD11]

What is the follow up regiment when starting Ibrutinib? How to see if any changes in abdominal lymphoma mass?

[PlanetaryKim]

I am seen once a month by local GP-oncologists, which includes blood work always and a physical exam if I need one - i.e., if lymph nodes or spleen size or anything else visible/palpable needs to be checked. I now see my out-of-town CLL specialist once every 4 months. But when I started ibrutinib, he probably saw me within the first month of starting... just to check that I was doing okay on the drug. Now the monthly check-up is done by local GP-oncologists at my local cancer clinic. Specialist is copied on all results.

kim

[TimHB]

I'm in a clinical trial, so it's a little different. I was seen by my out of town CLL specialist monthly for the first 6 months, now quarterly for the next 3 years. But I've been getting weekly blood draws, and my local hem-onc is in frequent contact with me, and I've been seeing my GP monthly, or more as needed. With everything I have going on, I have 2-3 doctor appointments a week with my various"ologists".

[cajunjeff]

I do blood work locally once each month which I send to my specialist in Houston. I see him every three months. I am still in my first year of ibrutinib. I am hopeful at some point I can just do my bloodwork every three months. Sometimes I don't feel hardly a pinch when they stick me, other times it hurts. I hate needles, its just my luck for me to get a disease that requires me to get stuck all the time. LOL.

They do an examination on my visits. To my understanding, all my nodes have gone and my spleen is back in its normal hiding place where they cannot feel it.

[Lola69]

Been on imbruvica almost 34 months I go every 3 months for blood work. He asks me questions on how I am doing. Sometimes he palpates me sometimes he does not.

[dmmck]

I saw my oncologist monthly for two months. Now I have labs monthly and see him every three months. I can email him any time, and he responds within 48 hours(usually within 24 hours). I can also ask for a phone appointment if needed.

[Jm954 Administrator]

Sounds as though it's different in different countries. In my NHS hospital it's follow up and bloods just every quarter.

[AdrianUK in reply to Jm954]

Mmm I would check what the more expert centers are doing. That doesn’t sound frequent enough to to me especially not at the beginning. But I’m not an expert and I am naturally more cautious.

[Jm954 Administrator in reply to AdrianUK]

It's fine and the gap keeps my anxiety levels down being so infrequent. I would say I'm in an expert centre so I'm happy - well, as happy as you can be with CLL!

[AdrianUK in reply to Jm954]

Surly they didn’t just start ibrutinib and then bring you back three months later straight away? No local blood tests in between? Any chance to contact if any problems?

[Jm954 Administrator in reply to AdrianUK]

Monthly, I was having Rituximab every 4 weeks for 6 months then 3 monthly 😊 I have contact numbers if needed.

[AdrianUK in reply to Jm954]

Well that makes more sense. Id erroneously got the impression they’d starred you on the drug and waved good bye to you for three months! This makes more sense and sounds like it’s fairly standard practice tho interesting that the BNF recommends monthly FBCs ongoingly....

[mrsjsmith in reply to Jm954]

As am I Jackie,

Started monthly and now just moved to three months and am also happy with that timing.

Colette 😍

[AdrianUK in reply to mrsjsmith]

It’s one thing to be started with monthly then moved to three monthly if things are stable at some point which I can just about understand. What I can’t understand is a doctor sending a patient who has just started Ibrutinib off and not seeing them for three months.

For a start the BNF recommends monthly monitoring of FBC if anyone on this drug (not just at the beginning by the way) as well as monitoring for Afib, unusual infections and a wealth of other side effects. To me ibrutinb should be thought of as a chemotherapy related treatment and taken VERY seriously. Not treated flippantly.

See

bnf.nice.org.uk/drug/ibruti...

[mrsjsmith in reply to AdrianUK]

I am not aware of anyone saying they started at 3 monthly visits ? I was on monthly for 6 months and now quarterly. As I am also on monthly IVIG I also have the usual tests then.

Colette

[AdrianUK in reply to mrsjsmith]

I got the impression that was what Jm was saying. But perhaps not. And for sure hopefully not!

Doctors can sometimes be quite bad at monitoring patients on drugs in general terms.

We certainly had this issue in psychiatry where people would be left on a medicine with no monitoring at all for years even tho it could lead to kidney problems which were.

But for sure a big part of all this is patients being aware of the kinds of things they should ask for help with even if they aren’t due a review. Eg obviously for ibrutinib any signs that might indicate atrial fibrillation where you wouldn’t even want to wait a day let alone a month or three!

[Lola69 in reply to AdrianUK]

I only see my doctor every 3 months since starting Imbruvica but can call or just pop up if I feel the need Had 1 bone marrow in 2015 and one pet scan since my diagnosis. diff. city diff. protocols , each patient is unique. ..

[Beattiem-UK]

I've just finished three months on Ibrutinib (Uk). I have been travelling to see my CLL specialist every month. I should have seen her two days ago for the third visit but I was struck down with an acute vertigo episode that I'm still struggling with. As I would have run out of meds my husband drove the four hour round trip to pick up my prescription from the hospital pharmacy. She must think I'm doing OK as She's given me seven weeks supply this time. She has asked me to get my bloods taken at my GP surgery though as soon as I'm well enough to leave the house.

[Audrey10]

I had a catsscan before starting Imbruvica to see how massive my lymph nodes were. In my case stomach was full of swollen lymph nodes. After 5 months on Imbruvica a follow up catscan was preformed. My results showed a 50 percent reduction in size. Life is good.

[annmcgowan]

Hi I am on Flair trial. For first 6 months I saw CLL specialist monthly, thereafter 3 monthly.

Ann

[AdrianUK in reply to annmcgowan]

Do you do FBCs in the middle or are they happy with three monthly FBCs after the first six months?

[annmcgowan in reply to AdrianUK]

Hi Adrian 3 monthly blood counts are all I get now. I am going for bone marrow biopsy,first one. My specialist said my bloods suggest I am in partial remission. He needs bmb to confirm.

Ann

[AdrianUK in reply to annmcgowan]

Fair enough I guess. Especially when the initial six months have passed uneventfully with a monthly visit at that point. It’s interesting tho that the BNF recommends monthly FBCs with no time limit on that. These sorts of decisions are never quite as evidence based as you’d hope to be honest! But for sure if you have concerns in between your appts you would be able to contact your FLAIR research nurse or your CNS right?

[annmcgowan in reply to AdrianUK]

Yes Adrian that is correct, i do have contacts I can use. I will take this up with them when I visit the unit for my BMB next week.

My GP, in the early stages of diagnosis, on watch and wait,did offer to do bloods monthly. The offer was not taken up. Presumably he would still be happy to do them if required.

Thank you for the information.

Take care.

Ann

[VLAD11]

Thanks to everyone for responses and suggestions. This was my first post and I’m just overwhelmed with how much care, kindness and power this community has to offer.