Top 3 ? - Questions for first visit to CLL specialist.

[Juliette02]

Hello everyone I do hope you have all had an 'easy' weekend !

I have a quick question .. And I mean that most sincerely because I know how generous you good folks can be with your time !

I have my first visit tomorrow PM with a CLL specialist. I did see a 'general' haematologist last Oct when I was diagnosed and like us all became a member of the W&W club.

Anyway since Xmas it's been a bit of a rough ride and while WBC is still low by comparison it doubled in a week with the rounds of -Infection- wrong antibiotic- Infection - wrong antibiotic- infections - 'good' antibiotic ! ... You get the gist...As well as acid reflux, fatigue, sweats and shivers, swellings, till the 'good' tablets kicked in to offer me some relief.

Anyway my Doc was and is as helpful as he can be and was more than happy to refer me for a second opinion.Clearly at this appt' I have my 'aches & pains' to discuss however I would like to try and hopefully 'work' with this chap at this meeting and it be proactive rather than reactive ... using my appt' time carefully and apart from discussing my current and recent symptoms what would be the 'top' three questions ( I am stage A ) a relatively new CLL'er, should I be asking

Kindest Juliette x

[nkferg]

The main one I can think of it has all needed testing been completed? (If they want to do more, check with insurance as some tests are hard to get covered.)

You may be on W&W for a very long time (hopefully). If you are low risk, you can probably have a local hem/onc monitor you. I would still see the specialist yearly to keep them in the loop. I would get the specialist's opinion prior to any treatment.

Seeing the specialist is the best thing you can do for your care. CLL treatment has changed a lot in the last 5-6 years, and will change more as other trials finish up. A specialist will know the latest treatments and trials that may be available to you when you have to go down that road. If you are high risk I would only see a specialist if you have the means.

Somewhere on the site is a post about questions to ask. I tried to find it, but ran out of time. I am in a trial and have a 2 1/2 drive today to see my doc. Best wishes with your visit. I am sure you will get plenty of responses on this post.

[Juliette02 in reply to nkferg]

I wanted to get into the specialist 'system' as I wasn't at all confident in the local Haematologist - Given what they didn't ask and surprisingly couldn't answer in hindsight.

Re Specialist - Clearly there will be far more poorly folk he will be dealing with - However should it be another 12 months +, hopefully ! before I see him again at least I will be on 'his books' which is reassuring in its self.

Thank you for taking the time to reply - good of you given your journey and treatment today - Good luck 🙋🏻

[lankisterguy Volunteer]

First develop a list of all the questions you have, then rewrite it with the most important at the top. Hand that list to the doctor and have a recording device ( smart phone ) to record the answers (with permission from the doctor). A second person- spouse or informed support person can help in addition to the recording.

You don't have a lot of time to read/study but whenever you can start reading:

cllsociety.org/cll-101/

read each of the subjects down the left column and those in the boxes across the bottom.

Also I suggest writing down several lists- and handing them over to the doctor or nurse: The symptoms that persist- after the good antibiotic, separated clearly from the ones that were cured by treating the infection- don't mix them up. All the drugs and supplements you take. All this preparation will save time and brain space to get past the routine data and on to the higher level discussions.

Len

[Juliette02 in reply to lankisterguy]

Thank You Len

Good advice and most reassuring !

Although I have been making 'notes' 'lists' plus my GP has prepped a few notes together.

So not too much 'cramming' the night before.

Great Link by the way and thanks once again 🙋🏻

[jenxgen in reply to lankisterguy]

Great advice Len, I too have recorded my dr consults and it has been great to go back and review things I missed the first time. I went alone to appointment so it made recording even more valuable

[Newdawn Administrator]

Hi Juliette,

I see you're fairly recently diagnosed and possibly still at an early stage with not relatively high numbers. Given your situation and because you're in the UK (so unlikely to be offered cytogenetic testing like FISH yet), I'd be wanting to know to what extent the present symptoms are B symptoms and CLL related. So I'd want my immunoglobulins tested because if they've dropped, it could explain the specific infections. It's like our body loses the blueprint to fight off certain antigens.

Maybe not enough time has elapsed to establish a trend yet but you may want to know your chromosomal profile. You could request a FISH test but you may not wish to know at this point.

The third question is a simple one but loaded. I'd ask what if anything you can do to help yourself with this. Are there any deficiencies (which ordinarily may not be tested for). Vit D, B12, magnesium etc. Supplementing my VitD has really helped me to limit infections.

You may find the specialist has his own format which will lead you down the route to what you need to know. Sometimes they will give prognostic indications to time to treatment given enough information. I think your primarily question is probably why am I getting these infections/symptoms at this early stage? Could they be menopause related (sorry I don't know your age).

Hope it goes well. Let us know.

Best wishes,

Newdawn

[Juliette02 in reply to Newdawn]

Quite right Newdawn re my age ! - Is it a flush, a flash, a sweat, a drench god knows ! I feel like I'm on a full load wash with extended spin cycle !

Thanks for that some very relevant and appropriate questions to ask, most insightful ! 🙋🏻 x

[SuzeJc]

Hi Juliette, I have my first appointment to see the same consultant today. We may be there at the same time. I've heard from a colleague that he will take time to answer any questions fully. I hope our appointments go well x

[Juliette02 in reply to SuzeJc]

Great ! Will pm you 🙋🏻