I echo @Erica in welcoming you to the forum. Thank you for your supportive message to anyone who has WM and is being treated with Ibrutinib. It must have been a worrying time when your husband relapsed, but I am pleased that he seems to be doing okay on his new treatment. Take care of yourselves
PS I just reread as i posted, and realised that I started my post with I echo…, and just realised that your pseudonym is parrotperson! Totally unintentional
helo ag. sorry. not been in here not sure where the time as gone but thank you for the welcomes!
Things have gone a bit pair shaped since I last posted. My husband like other shielders has been told shielding will be paused as of 1/8.
Interestingly his work phoned him two days BEFORE the announcement to say they expected him back to work. Mmmmmmm
Of course it isn’t that simple. Occupational Health did a risk assessment and decided it wouldn’t be covid safe. I wont bore you with the details but short of demolition and rebuilding the building will never be covid safe!
Anyway here’s where it gets tricky. His work want a sick note. His GP wont provide one. Not their problem they said as his firm can’t make it covid safe he’s still shielding. His consultant is happy to provide a letter explaining his condition, medication etc.
They however are insisting on a sick note. Conversations all day Tuesday til the point I was tearing my hair out. So looked at government website again and they suggest phoning ACAS. So I did. They were helpful. Couldn’t understand why they don’t just furlough him til October and have conversations with him in the meantime. I had to explain about how unhelpful they’ve always been. When he first got diagnosed within weeks they’d sent him home saying he was a danger to others. I kid you not!
Anyway. Another phone call from Occupational Health. They are adamant he can’t go back. They also say the company don’t need a sick note because he’s still shielding.
I should add that this is an independent firm of Occupational Health consultants who “advise” his firm.
Waiting to hear back. At this point he’d be quite happy with redundancy he’s so fed up. And the stress!! They’ve no idea.
Rant over. He remains well in himself which is a small miracle in itself. Hurrah for Ibrutinib.
Hi @Parrotperson, what a frustrating time you are having, you deserve what you feel is a rant, I don’t, this is what this forum is here for because we understand as perhaps others are not able to. Please let us know how you get on and spoil yourselves.
Hi all x
I had my 6 monthly review with my consultant mid July. Because of the Covid 19 it was a telecon. However I had to travel up to London to UCLH Macmillan Cancer Hospital for my bloods to be taken a few days before. Results were all good and bloods perfectly normal with my lgm stable at 6. As we all know it’s always a relief to get these kind of appointments out of the way.
Hope all are staying safe and well?
Sara x
Oh, @sajdee that is good news about your bloods, yes, always a relief to get the results.
Yes, I am staying safe are you venturing out at all?
Yes venturing out but still extremely cautious. I was going for walks and dog walks even when shielding but that was about it. I have avoided crowded places at all times and have not been in a shop/supermarket at all.
I sadly lost my brother before lockdown, thankfully we were able to arrange his funeral two weeks before. It’s been extremely difficult not being able to hug and comfort the rest of my close family during this time. However it has also been quite a healing time during the most quiet time of lockdown. It would have been his birthday on 31st July so we were lucky enough to get together and celebrate it how he would have wanted. X
@sajdee, I am so sorry to hear you sadly lost your brother before lockdown, I cannot imagine what it has been like for you and your family not being able to get together and grieve and I am so glad you were able to get together and celebrate on his birthday recently. Take lots of care and don’t forget we are here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to talk.
Hi @sajdee, I’m glad that your bloods came back ok and everything is stable. How have you been feeling since the appointment? I know I’m always drained once it’s done!
Gosh - what a hard time you and your family have had. I’m so glad you were able to celebrate his birthday together. Those things are so important! I can’t tell you how much I miss hugging people. Let’s hope we can do it again soon. Sending you a virtual one now! X
My goodness @Parrotperson. It doesn’t sound like it’s been an easy situation to sort out. A rant is definitely deserved and I would be ranting to. It helps to get it off our chest doesn’t it! I really hope things sort themselves out. Please let us know how you get on x
Hi All
Thanks for positive responses from May post, I haven’t been logging on.
I enjoyed my walks, seeing different scenery, got to know some new neighbours, but was sorry I felt so tired after adding in this new activity.
Had less fun diversions with eye appointments, but glad hospital was able to sort them out.
In August added in occasional trips to shops, hairdresser and libraries and in Sept outside gatherings of 4 to 6 friends, so some “normality”, although tiredness increased too.
Unfortunately my August blood tests had bounced the other way and my Consultant had changed his parameters for going onto Ibrutinib and said it would probably be necessary after my blood tests at the end of October. Initially I was resistant but have come to the conclusion that I need to do something to fight this tiredness, so will probably start taking Ibrutinib in November.
Patricia
Hi @Patricia, great to hear back from you, I also love my walks, yes, the scenery is always different .
I am glad you got some appointments and trips up to date during August. I am still chopping away at my hair, I wonder what the back looks like !!
Sorry to hear your tiredness (or fatigue?) is proving so difficult to cope with and that your August blood tests have bounced the other way so please keep letting us know how you are. If you would like the speak to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
Take care.
How have things been? X
Has anyone on Ibrutinib for WM found it caused weight gain over time? Thanks
sorry just seen this. My oh is on ibrutinib for WM. He has gained weight nut not excessively.
He did lose a lot before he had chemo and was 49kg at one point so now he’s back up to 60kg
which is about what he was before chemo. Once he was on ibrutinib he gained a little more
If you are concerned speak to your consultant. Obviously you have you have to stay on ibrutinib but he/she may have information that may help you.
