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[SunandMoon]

Hi. I was diagnosed two years ago. On watch and wait. Some platelet changes but WBC and RBC holding pretty steady. I feel solid with my oncologist. I struggle some with the emotional side. Reading about others' experiences helps with that. Thanks!

[Jm954 Administrator]

Hello SunandMoon,

Welcome to our friendly and supportive group. Good to hear that your results are holding steady.

Lots of good advice here about how to live well from PaulaS in a previous post.

healthunlocked.com/cllsuppo...

Wishing you well

[SunandMoon in reply to Jm954]

Thank you for the welcome, and I appreciated PaulaS advice. Very happy to have found this community.

[PaulaS Volunteer in reply to SunandMoon]

Hi SunandMoon,

Welcome to the group - glad you found us. And nice to know you found my "Things we can do" post helpful.

I've just looked at your profile and seen the explanation of your avatar name and picture Seeing a total eclipse like that must have been an amazing experience. Fantastic photo that your brother-in-law took of it!

Best wishes,

Paula (in Sheffield, UK)

[Hidden in reply to PaulaS]

Hi Paula

I hadn’t seen that post you’d done before but I’ve just had a quick look thru and we’ll done that’s a good check list for any newbie. I think I’ve learnt the hard way with most of those headers but it’s a shame something like that with a few additions couldn’t be offered when you join the site as a download.

How are you at the minute.

Stuart

[PaulaS Volunteer in reply to Hidden]

Hi Stuart,

Thanks for your reply. Like you, I wish I’d been given that check list when I was first diagnosed.

Ideally I'd like to see everyone who's newly diagnosed be offered a time with a specialist nurse who would sit down with them and go through that list (or a similar, improved list). They could discuss what is relevant to that person’s situation and together make an “action plan”. Later there could be followup meetings with the nurse, where feedback could be given and any questions asked.

This would help new folk feel supported through their early days of shock, and give them a feeling of some sort of control, at a time when often we feel so helpless and isolated.

I try to look out for newbies and send them the link to that post, but lack of time and energy means I often miss them. (Do feel free to point folk there yourself!)

My original post (“Coping strategies”) was in three parts and had even more points in all. But after a couple of years I trimmed it down and re-posted it as one article, to make it more user-friendly. Lots of people gave suggestions, and it was hard knowing how many to include. Had you any additions in mind?

Thanks for asking how I am at the minute… Answer - tired as usual . The side effects of Ibrutinib have hit me much harder and for much longer than I was expecting. I keep thinking I’m through the worst and things will be better now… then something else hits me. But that’s another story.

How are YOU doing?

Best wishes,

Paula

[Hidden in reply to PaulaS]

Hi Paula

The problem is when your diagnosed your bombarded with leaflets and information and appointments and that goes way over your head as most people are consumed with fear and aren’t thinking straight.

Your right things could and should be done better in terms of being more informative and running thru processes. I think step one is to give people access to a site like for patient to patient interaction to give people reassurance as when you get told “leukaemia” you think impending death, step two is you should be given a self help coping strategy guide like you’ve put together explaining everything in a simple format not just a basic book explaining what Cll is in an outdated format.

Much of what I’ve learnt since being diagnosed has come from this site or learning the hard way, I suffered with pretty much every symptom and side effect of Cll for about ten years prior to being diagnosed due to the ignorance of my local GP who’s whole practice seemed to be trained to say one word to every symptom which was stress.

I suppose I was lucky to get Ibrutinib as part Of the Flair trial and has worked great for me and I’m doing well thanks,I’ve learnt a lot about avoiding symptoms and side effects I’ll send you a few suggestions over to see if they help you.

I’ll have a read thru your post again to see if I can think of an additions, I’ve got a lot of ideas some for this site I’d like to discuss as well.

Best wishes

Stuart

[PaulaS Volunteer in reply to Hidden]

Sorry you had to learn things the hard way, Stuart. But I'm so glad Ibrutinib is working well for you.

I'll always remember my haematologist telling me that about 70% of people have no problems with Ibrutinib. And out of the 30% who do have problems, some have side effects that eventually go away, some have side effects they learn to live with, and about 5% have to stop the Ibru because of serious problems. (Not sure where he got those numbers from and what time scales are involved).

For some reason I optimistically assumed I'd be amongst the lucky 70%, as I was in relatively good health to start with. But it hasn't happened that way. Anyway, most of my Ibru side effects have stopped over time, so I keep hanging on and waiting for things to improve.

It's always good to hear from people who've had problems that did get better over time. I'll be interested to hear your tips for avoiding side effects, and any other ideas you have.

Best wishes,

Paula

[SunandMoon in reply to PaulaS]

Nice to hear from you, Paula.

Yes, I really did appreciate your post a lot. Relieved me of much of my guilt about resting more. And also spurred me on to get the shingles vaccine. I'm going to search it out right away. I got the pneumonia vaxes and boosters on the others, but had been wavering on the Shingrix.

I'm from Minneapolis, Minnesota in the US

[PaulaS Volunteer in reply to SunandMoon]

Hi SunandMoon,

I’m SO GLAD my post helped relieve you of guilt re resting more. NEVER feel guilty about having to rest! It’s bad enough being exhausted with CLL, but it makes it much worse when we feel we’ve got to struggle on and “fight it”.

I kept on fighting for too long.. It was such a relief when I realised that I really did need to rest more. And with more rests, I actually functioned much better (even if it was for less hours in the day).

I wish you well in your search for Shingrix. Some doctors are now giving it to CLL patients, but others are being cautious and want to wait till it's been in use longer.

At least one person in this forum (in America) has had Shingrix, and they had no problems (just the usual post-vaccination symptoms of sore arm and feeling a bit off for a few days).

When I asked my haematologist (in England) a few weeks ago, he’d never heard of Shingrix. But he was interested and pleased to know there was a non-live vaccine for shingles on its way. I'll be very keen to get it when it's available here.

It will be very interesting to hear more people’s experiences of Shingrix – including yours, SunandMoon..

[SunandMoon in reply to PaulaS]

I will keep you posted. I am grateful for your gracious, open advice. I hope you continue to be well. Rest.

[PaulaS Volunteer in reply to SunandMoon]

Thanks SunandMoon . Have you got anywhere in your search for Shingrix yet?

I'm very interested to hear different people's experiences, as I'd like to report back to my doctor here in Sheffield, who had never heard of Shingrix but was interested to know more.

Best wishes,

Paula

[MsLockYourPosts Passed Volunteer in reply to PaulaS]

Shingrex is in short supply in many areas in the US, and specialists seem divided on whether patients should get it now or give it more time because it's new. My doctor said absolutely, my pharmacist said he'd put me on the waiting list - none in the neighborhood.

[PaulaS Volunteer in reply to MsLockYourPosts]

Good to know your doctor is recommending Shingrix Pat, and that you're now on the waiting list for it.

Do let us know when you get it...

Best wishes,

Paula

[MsLockYourPosts Passed Volunteer in reply to PaulaS]

Based on my pharmacist's response, and posts from others, it seems that shingrex is somewhat available in some areas of the US and isn't expected anytime soon in others. I suppose my situation leaves me knowing what my doctor thinks about the to get it, or not debate, while at the same time leaving me in the position of waiting for more data about effectiveness, which other doctors think is important.

[PaulaS Volunteer in reply to MsLockYourPosts]

I can understand that some doctors want more data about the effectiveness of Shingrix for the immuno-compromised. But as long it's safe for us, I think most of us would like to get it, and not have to wait for more data re effectiveness.

Like all vaccines, it probably won't be as effective for us as it is for other folk, but even a little protection from shingles is better than nothing. It's good to know that YOUR doctor is happy to give it you, Pat. Just a pity that it's unavailable in your area (and many others).