20 Most Recent Posts

Replied On: Feb 06, 2012 02:11pm

olyocl

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Hi Heather, Glad you are going to Florida to swim with dolphins, I did it at Discovery Cove a few years ago and it was amazing. Could you let me know which company you manage to get travel insurance with as since I was diagnosed with CLL it is very expensive.

Replied On: Feb 04, 2012 01:46pm

jkstapley

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I went swimming with the dolphins last October the most relaxing day of my holidays also enjoyed feeding the manta rays and snorkling in the large pool get there as early as you can for a full day. Good luck from Jane

Topic Made On: Feb 03, 2012 11:08pm

Heather42

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Back today for my 3 months consultant appointment, Still on watch and wait, talked about possible treatment, need campath as have 17p Deletion, and a possible trial for a bone marrow transplant, bloods are still fairly low, no swollen nodes etc, but I am catching everything going, so know I am immuno suppressed, other than that, its life as normal for another 3 months, next appointment will be after I get back from Florida! Can't wait, been told Im ok to swim with dolphins, which is something Ive always wanted to do xxxx

Replied On: Feb 03, 2012 02:01pm

jkstapley

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Posts: 2

I started treatment for CLL in Feb 2009 and finished in July 2009 I went down the FCR route and have had dreadful problems with my skin ever since I think it was the Rituxamab which has caused this I get large red raised spots on my face neck hands and chest which itch dreadfuly and look a mess I also suffered very badly from itchy feet whilst on treatment to the point that the treament was stopped for 6 weeks but the fact that I am in now remission outways the skin problems as I have a chance to see my grand daiughters grow up, regards to you all Jane

Topic Made On: Feb 01, 2012 09:32pm

Nick

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Details for the Ontario CLL patient conference for this year, how to combine a holiday to Niagara Falls and a chance to meet up with CLL patients from worldwide and join the conference and CLL learning workshops. From Chris Dwyer CLL Canada.


Organized by CLL patients for CLL patients:

The CLL LIVE 2012 Conference Organizing Committee would like
to invite you to register for CLL LIVE 2012, the 3rd CLL Patient
Education Conference in Niagara Falls, Ontario, Canada.

You will find everything you need to know about the
conference on this web site:


http://cllpag.ca/Conference2012/index.html


We suggest you:

1. Register for the conference. You’ll find the registration section on the right side of the web page. Click on Registration and you will see directions for registration.
Registration is free of charge for patients and one companion each.


2. Book your room at Embassy Suites on the Internet or by phone. You will find the contact information under Accommodation.

Don’t forget to ask for the CLL LIVE discount rate.


3. Make travel arrangements to get to Niagara Falls, there are lots of tips on the website and you
can use our conference Travel Agency, McTavish Travel. Deanna will be pleased
to help you by email or phone. Check it out under How To Get Here.


Don’t hesitate to email us at cllpag.canada@gmail.com if you have any questions or comments.

Volunteers monitor the email; we’ll do our best to respond within 24 hours


See you in Niagara Falls!

CLL LIVE 2012 Conference Organizing Committee

Replied On: Jan 28, 2012 04:27pm

macone

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Posts: 13

Hi Robert
I too am now on a monthly Pentamide nebuliser. Currently on day 3 of third cycle bit tired and gippy apart from that all is well.
Update Later

Regards Macone.

Replied On: Jan 28, 2012 08:50am

Robert Cork

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Lartington

I have received multiple IVIG infusions. The following is the protocol used by my hospital:

Immunogloblin infusions. 4 x 100ml bottles (5 grams per bottle) of Vigam

Pre med of Piriton (for allergic reaction e.g anaphylactic shock), 10mg IV, and 100mg of hydrocortisone (steroid to help the body accept the Vigam.).

Infusion started at 30ml for the first 15mins, then to 50ml for the next 30mins and then 90ml for the rest.

An infussion which is administered to quickly will result in chills and rigors. Also the pre meds above can cause you to be sleepy.

Regards

Robert

Replied On: Jan 27, 2012 01:48pm

lartington

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I wonder if any patients have experienced "problems" when ivig has been given too quickly?

My husband who has cll, was recently admitted as an emergency to our local hospital with high fever etc., etc., for cellulitis. His treatment was intravenous antibiotics over a period of nice days followed by oral antibiotics for a further 1o days - during his stay in hospital he should have been at St.James in Leeds for his regular ivig. Eventually it was decided to infuse at the local hospital in a non-haematology department. The infusion (3 bottles) usually takes 5.5 to 6 hours on this occasion it was given over a period of 3 hours, and since then he has felt unwell - flu-like symptoms, general lethargy, yucky.............

We have a haematology app in Leeds on Monday and will query this, just in case another occasion should arise when he is out of action when his infusion is due. Any comments would be much appreciated. [size=4] [/size]

Replied On: Jan 26, 2012 08:56am

Robert Cork

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Macone

I also had a skin reaction to Spetra whilst of Fludarabine treatment (it's quite common as patients are allergic to the sulpha content of the drug). This resulted in me receiving a monthly pentamidine nebuliser to prevent PCP infection. This continued for 6 months following the end of treatment whilst my Tcells recovered to a satisfactory level.

Regards

Robert

Replied On: Jan 25, 2012 03:20pm

macone

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Posts: 13

Hi Just had the rash from hell. Had a reaction to septra. Clearing up now. start next cycle tommorrow.
Update Later.

Replied On: Jan 09, 2012 05:19pm

Venceremos

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Posts: 21

Heather,
Welcome aboard.
Get yourself a copy of The China Study by Dr Colin Campbell. I believe that diet is very important, possibly critical[I'm a Vegan]. Kids will be kids; but you need to eat exactly what you need.

Alan

Topic Made On: Jan 09, 2012 09:16am

Robert Cork

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Posts: 151

It is with great sadness I have to report that Terry Hamblin
passed away on Sunday morning. His family posted the news on his website. http://mutated-unmuated.blogspot.com/

His kindness and generosity to many CLL patients will be long remembered.

Topic Made On: Jan 08, 2012 11:46pm

Heather42

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Posts: 2

Hi all,
I'm heather, age 42. 4 children, 21, 10, 9 and 6.
I'm under Dr Wright at pontefract general hospital

I was diagnosed in June 2010 with cll, given my young age, I had a ct scan and a BMB, ct scan showed shotty nodes under arms, nothing else amiss, bone marrow is another story, I have 13q deletion, cd38 negative, but P53 deletion :(

I have night sweats, lymphocyte count is 22.8 and WBC is 19.7, all other bloods are normal, lumps under arm are now visible, I've also had a persistent cough since the beg of dec, 3 lots of antibiotics haven't shifted it, I've also had sinusitis and antibiotics for that too, I'm on watch and wait and back at hospital every 3 months, I do have very good supporting gp's although they don't know a lot, my main concern is P53 deletion so young and so early on. Xx

Topic Made On: Jan 06, 2012 04:23am

Nick

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Posts: 72

Two recent papers from From the Cardiff research group, UK have been accepted for publication. Both papers involved the study of prognostic markers in untreated CLL patients, and suggest immune or tumour cell markers that correlate with disease progression.

Expansion of a CD8+PD-1+ replicative senescence phenotype in early stage CLL patients is associated with inverted CD4:CD8 ratios and disease progression.
http://www.ncbi.nlm.nih.gov/pubmed/22190592

“Our data show that the emergence of CD8+PD-1+ replicative senescence phenotype in early stage CLL patients is associated with more aggressive clinical disease. Importantly, these findings were independent of tumor cell prognostic markers and could not be accounted for by patient age, changes in regulatory T cell frequency or cytomegalovirus serostatus.”

Defining the prognosis of early stage chronic lymphocytic leukaemia patients.
http://www.ncbi.nlm.nih.gov/pubmed/22171799

“Approximately 70% of chronic lymphocytic leukaemia (CLL) patients present with early stage disease, therefore defining which patients will progress and require treatment is a major clinical challenge. Here, we present the largest study of prognostic markers ever carried out in Binet stage A patients”

The latter, interpreted, translated and written about by Chaya at CLL topics

“Doc , how long do I have”

http://updates.clltopics.org/4336-doc-how-long-do-i-have

What can newly diagnosed CLL patients expect?

Nick

Replied On: Jan 04, 2012 07:04pm

Pixie

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Posts: 2

Robert thank you so much for your quick reply.I have not monitored anything to date but fully intend to start.Next appt in five weeks and will be asking a lot more questions than so far.Will let you know how I get on.
regards
Heather (Pixie)

Replied On: Jan 03, 2012 05:10pm

Robert Cork

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Posts: 151

Pixie

Welcome

Provided you have no symptoms e.g hot sweats, weight loss, fatigue and your blood counts do not, as a rule of thumb, go below: HB of less than 11 and Platelets of less than 100, then you should not need treatment. Remember that your white cell count can be in 100,000’s and this will not necessarily mean treatment.

I know the above is a generalisation and everyone is different, but this is a good foundation to start from.

One other point, monitor you blood counts, you are looking for TRENDS rather than a specific decline or rise.

Hope this is of help, if you need more then please ask.

Regards

Robert

Replied On: Jan 02, 2012 05:52pm

macone

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Gender: Male
Posts: 13

Hi All

Second cycle completed today. It's certainly been a quiet new year. Had a bit more nausea with this cycle.
Good news is my w.b.c. dropped from 196 to 14. Rest of my counts are reasonable. So it seems things are going well.

udate later

Replied On: Jan 02, 2012 10:00am

Pixie

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Posts: 2

Hi I am a new member so if this is in the wrong place sorry. I was diagnosed in 2006 after having pancreatitis. So far it has just been regular blood checks and visits to hosp for check, you are obviously very familiar with all that. I really have not gone into things too much but now the doctors are suggesting that treatment my be getting closer I feel I need to be more involved in whats going on.
I am very lucky in that I have very few symptoms, some tiredness and a slight lack of appetite but really nothing more. I am hoping I can learn from the members on here what they are experiencing and perhaps what to expect and how to be more 'in charge' of my own illness.

Replied On: Dec 23, 2011 02:04pm

Nick

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Posts: 72

Happy Christmas and New Year everyone. The sites been quiet , guess that's a good thing, all of us must be busy and living a little?

This will be my third Christmas in, it feels whole again. Many many more to come. Thank you for all your help.

Nick

Replied On: Dec 09, 2011 07:45pm

grampy

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Today was my three month result again, lymphocytes up very slightly to 13k but Hb has upped to 13.1 (I had a feeling it had risen). Am continuing with green tea extract with GP's blessing.