Hi.....does anybody have any objections to a health professional "without" CLL occasionally contributing to this forum?

[daisyruby1]

I don't have CLL myself, but am an experienced haematology nurse & currently coordinate a CLL phone forum for The Leukaemia Foundation Australia. I have contributed minimal posts on this site so far, partly as I am keen to hear peoples views & if they consider it acceptable for me to contribute when possible?.......despite not having CLL myself. Any comments appreciated & kind regards from down under...

[HAIRBEAR_UK Founder Admin]

Welcome Daisy Ruby

Thrilled that you have joined us from down under. It is more than acceptable,, we are privileged to have you with us. You will enrich our community thank you for your support.

I encourage you to contribute when possible.

Nick

[Newdawn Administrator]

Welcome to the forum daisyruby, diversity of opinion is always welcome particularly from medical professionals who can add specific CLL expertise and understanding.

It's particularly interesting to hear about services in Australia and I'm sure we'd like to know more about the 'phone forum you co-ordinate there for the Leukaemia Foundation of Australia. Which part of Australia incidentally?

Thank you for you interest. Regards,

Newdawn

[daisyruby1 in reply to Newdawn]

Hi Newdawn & sincere apologies that it's "only" taken me 4 months to reply! To answer your original question I'm based in Coffs Harbour in the lovely Mid North Coast of NSW but spent a large part of my upbringing in Sydney & still miss many things about the UK also...More generally hope to get on & contribute to this forum a little more often than the measly amount I've managed so far & constant work is my only excuse! More Very Soon & Best Wishes to all the UK! & all around this tiny planet!

[AussieNeil Partner Administrator]

Hi Daisy Ruby,

Thanks for your interest in our forum and a most appreciated offer to contribute from your professional experience - both as an oncology nurse and a support staff member of the Australian Leukaemia Foundation. I'm certain that both will be of interest here.

There are a few Aussies here and at least one Canuck - so you can be assured that colonials are accepted (well as long as we don't win the Ashes). There are even some ex colonials that have the audacity to celebrate their independence from the UK today! CLL is no respecter of political boundaries and we can learn from our different yet shared experiences, whether we have SLL/CLL or care/support people with it.

I know your input will be most welcome,

Neil

[djgolding in reply to AussieNeil]

..oops! Too late - on the Ashes thing I mean!

[Cllcanada Top Poster CURE Hero]

Welcome from Canada, eh!

[pitbull]

Hi Daisy Ruby

You are most welcome to contribute to our little gathering, everyone is welcome and we know no bounds ....but don't win the ashes

Your professional knowledge will be a valuable contribution to this forum

Kirk

[MsLockYourPosts Passed Volunteer]

OK - I'm one of those ex colonials (at least some of my ancestors go back to the UK) who is celebrating today. What on earth is "the ashes"? Welcome Daisy Ruby. I'm sure that the fact that you work with CLL, but don't have it, gives you a chance to look at things from a different angle, which is always valuable.

Pat

[AussieNeil Partner Administrator in reply to MsLockYourPosts]

Be thankful you don't know what the ashes are. What you ex colonials play is just not cricket - but you still have a national fascination for hitting a ball with a stick in an entirely different ball game.

en.wikipedia.org/wiki/The_A...

Neil (who is definitely not a cricket tragic unlike an ex Australian PM and many other Aussies and Poms*. I suspect it is a cultural excuse for men to escape for a while from their more sensible partners to couch surf for a few days with the remote in one hand and a cold tinny in the other - or is it a warm beer if you are a Pom?)

* This definition of Pom is just so appropriate:

"A British person - or close equivalent to the species. Specialise in inventing sports and timing themselves on how long it takes before all of their former colonies can defeat them at it.

Usage:

"Poor sad Pom - he never really got over the Ashes"

The origin of Pom is unknown but thought to be a play on pomegranate, alluding to the red cheeks of English immigrants to Australia.

[Mikey47 in reply to AussieNeil]

Pom or pomme or pommy...all of which the Australians use to describe English people is entirely inaccurate in itself because POHm means Prisoner of Her Majesty and we all know that originally the aussies were the convicts Britain didnt want any more. So its rather an ironic word for them to use...Pohm is what we should be calling them, but we are far too cultured for that so they may remain those aussie bastards (No offence, my niece is now an Aussie citizen and I had many Aussie friends while living in London)

[AussieNeil Partner Administrator in reply to Mikey47]

I deliberately omitted the Prisoner of Her Majesty theory because it has been discredited. As you say it doesn't make sense (unless you consider that perhaps we've escaped (our taxes don't support Her Majesty and family) ;). We even offered your ancestors assisted passages to escape - hence the term Ten Pound Poms (also called Ten Pound Tourists). This is a colloquial term used in Australia to describe British subjects who migrated to Australia after the Second World War under an assisted passage scheme established and operated by the Government of Australia.

Incidentally, my state (South Australia) was the only state of Australia colonised by free settlers - immigrants who paid for land packages which funded the state's development. Buying 'off the plan' has a long. long history!

[MsLockYourPosts Passed Volunteer]

Thanks Neil. you just never know what you will learn on CLL sites.

[Parramatta]

Hello Daisyruby, I am from Sydney and I think your professional contribution would

be very helpful and most welcomed!

[Gartshore]

Welcome, Daisyruby - I follow this forum every day fae Bonnie Scotland. I look forward to your posts.

[Newdawn Administrator]

Well folks, hope the promised UK heatwave (not in the North obviously!) has perked everyone up and renewed optimism.

Kind of reminds me of a joke I heard (Neil will like this),

'What's the height of optimism? An Aussie batsman putting on sunscreen.' Lol (and ouch!)

Best wishes people, hope everyone is coping in spite of...

Newdawn

[AussieNeil Partner Administrator in reply to Newdawn]

Newdawn,

Is that optimism because:

1) There might just be some sunshine during the cricket?

2) The Aussie team might stay in long enough to get sunburnt (Double Ouch)

Neil

PS 1) I have been to one place where the locals joked they didn't tan - they rusted. And no, it wasn't in the UK!

PS 2) I have visited the UK and it was lovely sunny weather while I was there. (Mind it was only for 3 days and in June.) The highlight of my trip was being told by a complete stranger on the Tube that "I obviously wasn't from around here as I looked too healthy" - I had more of a tan than the locals after coming to the UK from our winter....

[Newdawn Administrator]

Oh I don't doubt it for a minute Neil. I'm in contact with a friend in Queensland every day and our idea of a heatwave temperature is her cue to turn the central heating off!

Mind I do live in the part of the UK where if a man wears a coat, they question his masculinity! Lol.....

Have a great weekend (whatever the weather or your nation's sporting prowess!),

Newdawn x

[Hidden]

Welcome Daisyruby1.

I'm new to the site but more the merrier seems good to me, especially informed participants. Would write more but hey the sun is shining here in Wales so off to get my share of Vit D. No I won't overdo it, be under my shade. What about the rugby then?

[HAIRBEAR_UK Founder Admin]

Big day tomorrow bbc.co.uk/sport/0/rugby-uni..., will have to position the telly so I can see the screen.

From Sunny Wales

[AussieNeil Partner Administrator]

Bubnjay,

Do you mean this?

uk.eurosport.yahoo.com/news...

Sorry to disappoint everyone, but I don't follow rugby (or any sport much). Rugby is more popular where DaisyRuby1 hails from. Here Aussie Rules football is the most popular foot ball sport, with soccer (UK football) a distant second.

Glad you in the UK are enjoying the warmth. If it gets too much for you, please send me some. Today has been cold, wet and windy with the temperature almost making it to 15C. Thankfully I was able to enjoy a sunny spell for a midday walk.

Neil

[Berrytog]

Good morning Daisyruby

Leaving the banter to one side for the moment notwithstanding the fact that Englishmen and particularly Welshmen prefer to play with oval balls, we all welcome your input as a breath of fresh air as nothing can compare with hard facts especially when it comes to those facing treatment and you seem to be the person that can advise us how best to avoid adverse events more importantly grade 5!

B-T

[ygtgo]

Welcome Daisyruby, .... I look forward to your observations, especially from your perspective via the CLL phone in.

Here in Bonnie Scotland, the sun ( as usual ) is trying hard to break through, the wind is playing havoc with me kilt,.... but at least the midges aren't biting !!!

....and yes Aussieneil, the British specialise in inventing sports, then tell us here that winning isn't important - it's the taking part that counts !! .... being a Scot, my sports enjoyment is shouting at the telly for an hour or so, until we snatch defeat from the jaws of victory.

[AussieNeil Partner Administrator in reply to ygtgo]

Ahh the wind in Scotland. Years ago I saw a great postcard from Scotland showing summer and winter comparison pictures. The two scenes looked identical until you looked closely and saw that the rain was coming straight down in the summer picture and going horizontal in the winter.

Neil

Who's great grandmother's family found a warmer, sunnier and drier climate than Skye...

I've always struggled to understand why kilts are such good kit against Scottish weather...

[ygtgo in reply to AussieNeil]

History lesson #1 .... The Scots were a people who lived in the wilds of Ireland - who one day looked across the sea, and said " Look, there's an even colder, wetter, windier place over there, lets go " .......

...... Verticle rain is warmer than horizontal rain ..... it also doesn't get up under yer kilt !

[buckinhard]

Hi everyone, I'm new to this forum and so happy to have found it. I also welcome Daisy from Aus.. The more info I can get and the more I can hear from other CLL people, the better it is for me. I was diagnose June 2012 and haven't met anyone else with CLL.

[ygtgo in reply to buckinhard]

Hi there buckinhard ....

Glad that you found your way here, though sorry that you had to....

Feel free to jump in with any queries, there are no stupid questions..... I am up here in SUNNY Scotland ( is this what's summer is supposed to be like ? ) ... I'm 54, and in my 8th year of Watch & Wait.

[buckinhard in reply to ygtgo]

Hay ygtgo, I giggled with your comment about the horizontal rain getting under your kilt ! I'm in the US. I have a small ranchette with horses, dogs, cats and hens. Tons of predators like mountain lion, bobcats, hawks, owls, also rattlesnakes, gopher snakes, king snakes, garter snakes, red racers etc.

Wow, you were diagnosed young. 8 years of W/W. I do have a question for anyone who will answer. What is everyone's WBC count they live with day in and day out. Mine is at 80,000 +, I was diagnosed June 2012.

[daisyruby1]

Hi Everyone & many thanks for all those warm expressions of welcome & fae the A1 quality banter!......I should clarify / qualify a couple of things.........firstly & most importantly I am also an expat "Pom" who calls Australia home & also lived & worked in London & in "Bonny Scotland" during the 1990's also......so I can see I have much in common with many of you but have predictably rather confused loylaties with all things sporting..e.g. the upcoming Ashes series! I should also have said "relatively" experienced haematology / oncology nurse.......to whit / i.e I have worked in x 2 bone marrow / stem cell transplant units in Sydney in the mid / late 90's & more recently until aquiring this job @ Leukaemia Foundation 12 months ago I worked as a registered nurse in the outpatient chemotherapy unit @ North Coast Cancer Institute / Coffs Harbour NSW & continue to work there 1 day / week in clinical trials. Most importantly..the one thing that coordinating the CLL phone forum has taught me is that many of you are very likely to be far more up to date with latest developments in CLL than I am, but I aim to keep up as best as I can & learn as I go, but hope to contribute whatever / whenever I can to this forum from a nursing / clinical trials / support services persepective & look forward to contributing as often as possible. Special thanks to Aussie Neil for introducing me to the healthunlocked forum & for your excellent knowledge of CLL online resources & latest developments. I hope to converse with you all again soon!....PS my name is really Chris & not actually Daisy Ruby at all! Cheers! C

[buckinhard in reply to daisyruby1]

funny comments ! I have a few Brit and Aussie friends on facebook and ALWAYS get a kick when they start the comments about their teams !! Makes me laugh !

I'm a newbie and will learn from everyone about CLL. <3

[aussiejo in reply to daisyruby1]

How does one join the phone forum? Australian with CLL.

[AussieNeil Partner Administrator in reply to aussiejo]

Simple! Send Chris (daisyruby1) a Private Message, asking him to include you in the monthly email invitation:

healthunlocked.com/cllsuppo...

[daisyruby1]

PS I especially appreciate the various quips re Scottish weather, the kilt's "questionable' abiltiy to repel it, the horizontal winter vs verticle summner rain / wind / midges etc etc......& the less I say re the Ashes (for now...!) the better but congratulations to the roaring Lions for the weekend's "hammering" of the Wallabies! Best wishes to all back in Ye Olde England, Wales, Ireland & Dear Auld Reekie & to all here doon under also! Seriously though...happy to try to answer any questions re CLL when possible, be honest when I can't & try to find the answers in the meantime!.........Cheers All....Daisy R I mean.....Chris

[PaulaS Volunteer]

I'd like to add to the welcomes to you, DaisyRuby/Chris. I think it's great that a leukaemia nurse is interested in hearing things from the patient's perspective. And maybe you can give us some insights on the doctor/nurses' way of looking at things. I'm a retired nurse myself - I had to stop work early due to excessive fatigue, which I'm assuming was due to the CLL, but I realise not everyone is affected in that way.

We're actually on holiday in Scotand at the moment, and the UK heatwave has only just kicked in this morning. But the midges (and ticks) have been here all the time.

Paula

[daisyruby1 in reply to PaulaS]

Hi Paula...a very delayed reply from me I'm afraid but thanks for your kind welcome & I'm always keen to hear anything fae bonny Scotland.......I will comment that severe fatigue is possibly the most consistently reported symptom across almost everyone with CLL I've ever spoken with & also across the spectrum of almost all blood cancers generally. It is often one of the hardest issues to manage & / or address & especially as the exact causes are not always very clear e.g. in the absence of specific issues such a anaemia or recent administration of chemotherapy etc....I'm happy to elaborate or discuss further if needed & I hope you survived those midges! Cheers! Chris

[Ernest2]

Hello Daisy,

Welcome !

Think it's a great idea for you to join the forum.

I'd like to encourage a wide spread of people interested in CLL from all angles.

Look forward to your posts and comments.

Best Regards,

Ernie

[swiftbrook]

I personaly do not have any objection.

[Safta]

welcome just because all the accompanying comments made me laugh and they do say that laughter is the best medicine.

[aussiejo]

To Daisy Ruby

I need to ask a health provider professional a question. Intravenous immunogloblin. Recent problem. Told by Nurse, missed vein, got tissue, now entry site infected. Is this common? ( the missing and the infection ) Veins very easy to see, young man, no body fat. On antibiotics now.

[daisyruby1]

Hi Aussie Jo, It is unfortunately one of the risks of any insertion of an IV cannula; yes it is relatively common to occasionally miss a vien & enter tissue & despite the fact that you are young with good visible veins etc; infection from these occasions is less common but can still occur, especially in people who are immunocompromised e.g. with CLL; it always depends upon how soon the error is detected & how well it is managed by the staff from that point onwards; from your message it sounds like the error was discovered & corrected prior to any IV immunoglobulin being infused?..the inadvertent infusion of IV IG into subcutaneous tissue is referred to as extravasation & can be quite painful & I hope this has not occurred also? Great care is taken by all health professionals to minimise the risk of this occuring when inserting IV cannulas but it can still sometimes occur for a wide range of reasons including human error, failure to properly assess the IV site or select an appopriate insertion site or properly secure the IV cannular or device etc; occasionally veins can look & feel perfect as yours sound but they can move under the skin if not well immobilised & some have thicker / harder walls (lumens) & need more pressure to puncture; very occasionally it happens spontaneously mid infusion & for largely unknown reasons; the most important thing is how soon the error is noted by the staff & how quickly effectively it is managed. It sounds like on this occasion the error was picked up & corrected early & before anything was infused? & I can only assume the site is now being routinely reviewed by your doctor / haematologist or a medical officer whilst it is healing & whilst you are on anti-biotics? Please et me know if you need more information / clarification or I can try to elaborate? I hope this helps a little?......Cheers.....Chris

[AussieNeil Partner Administrator in reply to daisyruby1]

More on Extravasation/Tissuing

uic.edu/pharmacy/services/d...

[Lenny123 in reply to daisyruby1]

I am facing need for bone marrow transplant, quite scary, with 20% mortality rate and graft versus host reaction. Can you give us some of your stories from nursing about transplants ??

Infection from IV's can be horrific, though rare. As a surgeon with Cll, am invested !! Couple of tricks-shower, before getting IV,blood draws. Wash hands forearms with soap and water at the center. Also ask for and apply alcohol swabs for at least 3 minutes, before stick, it takes that long to be effective. Nurses are rushed and may just swipe with swab.

Helps nurses if veins are prominent, drink lots of water, before, have them put on vein tourniquet a few minutes before, apply warm compress to the area to be accessed. And a couple of arm, hand exercises, with tourniquet on help too. I ask that a little Heparin be injected, before removal of IV, unproven, but I think it helps prevent vein clotting off.

[AussieNeil Partner Administrator in reply to Lenny123]

Hi Lenny,

I'm sorry to hear you are facing need for bone marrow transplant. As you appreciate, due to the high risk you've noted, with risk increasing with age, they aren't done lightly. I presume you've found an excellent CLL specialist and sought a second opinion and that you've checked that there aren't any trials available to you?

If you haven't done so already, do a search for 'CLL transplant' on this site. While a stem cell transplant is still the only recognised cure for CLL (other than perhaps a small percentage with the right genetics treated with FCR), they tend to be limited to younger patients with very aggressive CLL or older patients where there is no other alternative ( e.g. for patients refractory to available treatments due to previous treatments or unfavourable genetics).

As you've indicated, the graft versus host reaction can also result in a reduced quality of life, but there are patients with CLL that have successfully gone on to live near normal lives after transplants.

Also, check out Dr Brian Koffman's blog:

Brian Koffman's Awesome Transplant and CLL Adventure: Learning from and about Cancer

bkoffman.blogspot.com

His transplant didn't take, but he is doing very well thanks to his involvement in a trial.

Thanks for the IV tips - I'm sure many will appreciate them.

I hope you are able to find the right path for you to best manage your CLL.

Neil

[daisyruby1 in reply to Lenny123]

Hi Lenny, Like Neil I'm very sorry to hear that you are facing the prospect of an allograft transplant & wish you only the very best with it. It is difficult to know what to say re sharing my nursing stories about stem cell transplants as it is an extremely broad question. I could tell you a million anecdotes (both good & bad) that may not be relevant & never occur in your case & cause you undue & / or inappropropriate stress as a result. If you have specific questions I'm more than happy to try to answer them if I can? Did I interpret your post right in that you are yourself a surgeon? I do know that GVHD & it's control is still one of the biggest challenges in the post allograft setting & this is usually mangaed with tailored / carefully titrated doeses of immunosuppresants & steroids......but also that a small about of graft vs host is deisrable as it also has a graft vs leukaemia effect. The exact level of GVHD you may experience will depend on the relative compatibility of your donor (e.g. is your donor a sibling or unrelated? / & have you been informed about how exact the HLA tissue typing match is?) & the duration & quality of your post tranplant response will again very likely depend upon the prognosotic cytogentics of your CLL & a range of other factors including previous chemo treatments & the exact myeloablative chemo regime used for your transplant etc. Like Neil I can confirm that many people live very normal lives for many years after transplant & strongly encourage you to read the blogs he suggests from a people who have experienced it first hand. I also support his query to check if there are any current clinical trails available to you & encourage you to check this with your haemaotologist. Frustratingly any information I provide has to be extremely general & non specific in nature in this forum & I hope you can appreciate the reasons why as I am not privy to any of your specific clinical details. As a nurse having witnesses several post cannulation infections, I do strongly upport & applaud your suggestions re showering before IVC insertion & allowing ample time for alcohol swabs to dry on clean skin before needle insertion. Extra oral hydration & warm compresses prior to IV cannulation are also excellent suggestions & to my knowledge practiced & recommended routinely in many treatment centres in Australia & presumably overseas also. Let me know if you have specific questions Lenny?...or would like me to try to elaborate on any of the above?....Very best wishes to you Lenny & I hope to hear from you again soon. Cheers for now....Chris

[Lenny123 in reply to daisyruby1]

Thanks for your very caring response. Yes I am a surgeon, have had to stop clinical activity, undergoing chemo and am having re staging after 3 cycles. Then transplant re evaluation. Also going to see a distant cll specialist. Very busy time, hoping for a reasonable plan, going forward.

Goals are, naturally, prolonged remission, getting back to work, life. Cure would be lovely!!

How non chemo agents, even CARS T fit in are intriguing, but for now, chemo and, if feasible, transplant seem the best options.

[littleriver]

No problem.

[Meic]

Nope, I welcome other informed perspectives.