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RachaelB on 26 June 2009

Category: Uncategorised

Replies: 10

Last updated: 16 July 2009

Good news - Glivec seems to be working
by hcy0da (Jul 16)

Hi Rachael
As Sandy says Addenbrooke's is the place you would probably get transferred to from Bedford; it is where I went when I needed more specialist help. Dr Huntley is a CML specialist who also

by michael (Jul 5)

Please do keep us informed about your CML journey,Yes very lucky to to be at Kings,Leukaemia research(they have about 20m to spend per year) currently invest£800,000 in scientific research in

by RachaelB (Jul 5)

Thanks Michael. Your recent post has certainly convinced me that I need to discuss this with my current consultant. Kings sounds like it has great facilities - you are very lucky. Will keep you

by michael (Jul 4)

At Kings you have

1 Cml patient/carer surport group

2 specialist CML nurses

3 phamacy that dispences cml specialist drugs

4 has a specialist lab that tests for BCR-ABL,
Category: Uncategorised

Replies: 10

Last updated: 16 July 2009
Pennie on 21 June 2009

Category: Uncategorised

Replies: 1

Last updated: 3 July 2009

INFa and multi dose pen.
by sandy craine (Jul 3)

Dear Pennie...... how are you managing with the Ifn pen? Sorry I had no advise as I have never used one of those but I hope you overcame your initial fears and now finding it easier.
Sandy

by Pennie (Jun 21)

Hi

is anyone using the Inf multi dose system to self inject? I am starting tonight and the instructions are daunting. Been through it with the clinic but feeling a bit wobbly about starting
Category: Uncategorised

Replies: 1

Last updated: 3 July 2009
patrice on 21 June 2009

Category: Uncategorised

Replies: 9

Last updated: 4 September 2009

Newly dx and pregnancy
by Martha Stuart-Berrisford (Sep 4)

Hi everyone, I've been trying to post my progress on here for a while. I was diagnosed with CML in Nov 07 after a year on Glivec and on only 200 mg a day I did not respond to it. Stopped taking

by Nansubuga (Sep 2)

That is what i want to hear too.... attimes my heart disagrees with the results. I am in germany and was dx with CML at 25yrs (this year). That was not good news though but hopefully, there will be

by cassidy62 (Jun 22)

Hi Patrice, i live in the uk and i was in complete cytogenetic response when i fell pregnant not far off negative. I had been on glivec for 12 mths with no major side affects and durng pregnancy i

by kathy (Jun 22)

Hi again,yes i have a son ,i was dx just after he was born,they did think i had the cml during pregnancy,email me if you want and feel free to ask anything,kathy.prudence@homecall.co.uk

it
Category: Uncategorised

Replies: 9

Last updated: 4 September 2009
diwasholla on 18 June 2009

Category: Uncategorised

Replies: 3

Last updated: 24 June 2009

Consumtion of Glivec ,It's good and bad effects and the ways to lower the bad effects................. please Help.
by lynnsch (Jun 24)

Hi Diwas,
I have only recently been diagnosed so am pretty new at this but I also have water retention and I fully agree with John that keeping your body fully hydrated is the best way to help. My

by johnh (Jun 24)

I sometimes wake up with swollen or puffy eyes and it is always because I have not been drinking enough liquids (or too much of the wrong liquid LOL).
As soon as I increase my water intake I return

by Francis (Jun 21)

The only thing I've found useful is a drug called "Lasix:"Flourisomide". The side effects from that are those of a fairly high-powered water pill "diuretic". This has its own problems. For me its

by diwasholla (Jun 18)

Hi everyone, My name is Diwas and i am from Germany. Last year my mom was very sick and had to be admitted in Hospital in Nepal. My parents Live in Nepal. Doctors in Hospital told that she has high
Category: Uncategorised

Replies: 3

Last updated: 24 June 2009
Douglas G on 18 June 2009

Category: Uncategorised

Replies: 3

Last updated: 20 June 2009

Diagnosed late Jan 09
by Janet (Jun 20)

Yes, I'm foggy!! I agree with Annie, it hasn't got any worse over the 3 years I've had CML. For me, it has meant that a lot of little things just disappear completely under the radar - tricky at

by Annie Kennedy (Jun 19)

Doug

I was diagnosed 5 years ago age 40 (400mg Glivec ever since) and became aware fairly quickly that my short term memory was playing tricks on me - could not remember simple things like

by technician69 (Jun 19)

Hi Doug, my daugher (17) is on 500mg Glivec per day, she has found her concentration levels are very low, also she is very forgetful. I think this could be to Glivec as she was very alert before

by Douglas G (Jun 18)

Hi everybody

My name is Doug and I was diagnosed in January. I'm 58 years old and self employed and have no insurance. Any input on getting insurance with preexisting would be welcome.

I
Category: Uncategorised

Replies: 3

Last updated: 20 June 2009
Ali Loram on 18 June 2009

Category: Uncategorised

Replies: 2

Last updated: 24 June 2009

4.8 log reduction on Nilotinib
by sandy craine (Jun 24)

Dear Ali,

just seen your note about your fantastic response. What a great result given that you were so fearful that you would not be able to continue taking Tasigna due to the initial skin

by zaviemiller (Jun 19)

This is an outstanding result. Most labs' PCR equipment is not sensitive enough to report PCR values greater than 4.0. Consider your result as being the elusive PCRU.
Well done,
Zavie

by Ali Loram (Jun 18)

Just come back from Hospital today & would like to share some good news with you. My BCR ABL results were back, a suprise as the bone marrow biopsy was only taken 2 weeks ago. I have acheived a
Category: Uncategorised

Replies: 2

Last updated: 24 June 2009
RachaelB on 18 June 2009

Category: Uncategorised

Replies: 9

Last updated: 19 June 2009

Hello I'm new...
by hcy0da (Jun 19)

Hi Rachael
I will definately get in touch when I am home but in the mean time please feel free to email and say hi my address is hcy0da@googlemail.com
Best wishes
Helen

by RachaelB (Jun 19)

Hi Helen
Thank you for your reply.
It would be great to chat when you are back home recovering. I hope it all goes well at Addenbrooke's - please keep in touch
Take care and best wishes x

by hcy0da (Jun 19)

Hi Rachael
Just wanted to say hi and let you know there are a couple of us on this site that are from Bedford. I was dx back in 2007 and have found a very good friend also from Beford via this site

by chrissbb (Jun 18)

Hiya, i dont want to repeat what everyone has already posted, but this site is the best around for genuine no bull support, Sandy is the lady to ask if you have any main medical Questions.

It
Category: Uncategorised

Replies: 9

Last updated: 19 June 2009
Des on 17 June 2009

Category: Uncategorised

Replies: 1

Last updated: 18 June 2009

CML Meeting for 2009
by sandy craine (Jun 18)

dear Des,
It really is up to the CML working group which is led by the UK clinicians working in the field... Profs. Jane Apperley and John Goldman.

Usually the seminar is held later in the

by Des (Jun 17)

Has anybody decided when and where the 2009 conference will be. I haven't been since the Bristol conference a couple of years ago, which I really enjoyed and hope I can get to the next one.
Category: Uncategorised

Replies: 1

Last updated: 18 June 2009
Des on 17 June 2009

Category: Uncategorised

Replies: 3

Last updated: 28 June 2009

Haematology Conference in Cairo
by Basil from RSA (Jun 28)

Hi to you all,

After at least 3 years of being tested negative, I have also come off Gleevec, to avoid the nasty side effects that were becomming intolerable.

I was not as badly off as

by zaviemiller (Jun 18)

Hi Des and Patricia,
Can you share with us what your doctor's plan of action is while you are doing this. e.g. How often you are tested. What is the criteria for restsarting Gleevec (or an other

by patricia dever (Jun 17)

Des, I stopped Glivec 5 weeks ago with the full support of my consultant Prof Michael O'Dwyer...so far things are going OK, I have a little more energy, eyes are back to normal, no more cramps,

by Des (Jun 17)

Just had my first appointment with my local Consultant after stopping Glivec 3 months ago with the support of HH. Didn't know what to expect as up to now, like many other medics he has advised
Category: Uncategorised

Replies: 3

Last updated: 28 June 2009
Pennie on 17 June 2009

Category: Uncategorised

Replies: 2

Last updated: 18 June 2009

Tasigna plus Inf:
by sandy craine (Jun 18)

Dear Pennie,

good to hear that your doctor is up for trying novel approaches in order to get your pcr to zero and less.

I will be watching your response to the combination with interest

by CherylAnne (Jun 17)

Hi Pennie,
I think this is rather interesting on trying Tasigna with IFN. I am on a very low daily dose .5MIU of IFN with Dasatinib, since last July and I must say that it is barely noticeable as

by Pennie (Jun 17)

Hi all

Just back from Kings. My PCR still bobbling in the low CCR zone. Dr don't want to increase my Nitotinib doseage, I am on 400mg, as I have shown such a sharp rise in my blood sugar
Category: Uncategorised

Replies: 2

Last updated: 18 June 2009
Barbs on 16 June 2009

Category: Uncategorised

Replies: 5

Last updated: 17 June 2009

Dilemma
by tadlaw (Jun 17)

I like the idea of keeping the next generation meds in reserve for when Gleevic fails or becomes resistant. In my case, I'm handling all this for my 11 year old son - who may just need meds for

by Barbs (Jun 16)

Thanks for your replies, I really appreciate them.

You all changed to Nilotinib because Glivec didn't work for you or because of severe side effects so I undersatnd what you say.

After

by Pennie (Jun 16)

Hi Barb I have to agree with both Ali and Julie, I feel great on Nilotinib. After all the side effects from Glivec this is a doddle. I have lost loads of weight, no swelling, no puffy face, no

by Ali Loram (Jun 16)

Hi Barbara, I can wholly agree with Julie. I too feel so much better on Nilotinib. I said to my Dr that it gave me back my life as i was so unwell on Glivecwith side effects, mostly swollen eyes,
Category: Uncategorised

Replies: 5

Last updated: 17 June 2009
ali on 14 June 2009

Category: Uncategorised

Replies: 7

Last updated: 25 June 2009

Post office travel insurance
by johnh (Jun 25)

I have just spoken to Medici and was not particularly impressed. They would not give me worldwide cover, which I currently have, and wanted nearly £200 for annual European cover for self and healthy

by sandy craine (Jun 18)

I have removed the post office as a recommended travel insurance provider from our travel section... I have now included the details of Medici Travel on that page. Thanks Karena for the suggestion.

by ali (Jun 15)

Many thanks, Medici Travel have come up trumps. Excellent to deal with and saved £70 from our last Post Office policy (glad P.O. don't do annual insurance for CML now).

Ali :-)

by technician69 (Jun 15)

Hi everyone, I agree with Karena. Medici Travel insurance is very reasonable and good cover. I have insured Becky with them for our holiday in August. x
Category: Uncategorised

Replies: 7

Last updated: 25 June 2009
tadlaw on 14 June 2009

Category: Uncategorised

Replies: 1

Last updated: 16 June 2009

EHA 2009 Nilotinib Superior in CML than Current Standard
by Barbs (Jun 16)

Hi this is what my dr was telling me yesterday by mail, please see my post above.

More & more of us will be faced with this difficult choice within the next few months/years

Barbara

by tadlaw (Jun 14)

Hi. I just read an interesting article on Medscape (from WebMD)indicating that the response from Tasigna is superior to Gleevec and it may replace Gleevec as the primary therapy. It's not too long
Category: Uncategorised

Replies: 1

Last updated: 16 June 2009
sandy craine on 12 June 2009

Category: Uncategorised

Replies: 1

Last updated: 13 June 2009

H1N1 Flu pandemic - PPSV23 vaccine
by tadlaw (Jun 13)

Hi Sandy,
We've had a recent concern with my son Ben. The swine flu is currently travelling through his school. The district has agreed to put him on home study with a teacher for the rest of the

by sandy craine (Jun 12)

As the H1N1 Flu virus (swine flu) is now officially declared a pandemic we should be mindful of the possibility, for those of us who are included in certain medical categories, of developing life
Category: Uncategorised

Replies: 1

Last updated: 13 June 2009
Des on 10 June 2009

Category: Uncategorised

Replies: 4

Last updated: 20 June 2009

Still negative
by nomzz (Jun 20)

Hi,its good to know that u r getting better...i was surfing net to find some data related to webhosting but in the mean time came here...Well good to see u r not disappointed...one must never be

by Barbs (Jun 16)

This is good news - let's hope that things stay this way - i can't remember whether you've taken interferon in the past,

Barbara

by tadlaw (Jun 11)

Best long term wishes for you on your journey - you have all my support. Enjoy the freedom.
Regards,

Tracey

by sandy craine (Jun 11)

Dear Des,

thanks for keeping us updated on your PCR. As you say it is a little early to tell if you are going to maintain CMR but you must be heartened by the results so far.
I am really
Category: Uncategorised

Replies: 4

Last updated: 20 June 2009
lisad123 on 6 June 2009

Category: Uncategorised

Replies: 2

Last updated: 8 June 2009

infections and neotropenic
by michael (Jun 8)

Darren might need GCSF injections to promote the growth of new cells to help fight the infection,Glivec can make you neutropenic allowing infection to take hold,Blood monitoring is very inportant,

by sandy craine (Jun 8)

Hi,

I really think that if you are still worried and your husband is still not responding to anti-biotic treatment then you should ask for his neutrophil level to be assessed which will mean

by lisad123 (Jun 6)

Bit of background. My husband Darren was dx with CML in March. He had 6 weeks of a chemo (cant remember name) as his wbc was so high. His now on gilvec. His been ill all week. GP said ear infection
Category: Uncategorised

Replies: 2

Last updated: 8 June 2009
sandy craine on 5 June 2009

Category: Uncategorised

Replies: 10

Last updated: 18 June 2009

Psychology of Long-Term Survivorship
by sandy craine (Jun 18)

Chris... I will let you know details of the meeting as soon as they are decided.
best wishes,

Sandy

by Tufty3 (Jun 16)

Hi Sandy
I have had CML since Jan. 2001 and have been taking Glivec for most of this time. There have been a lot of ups and downs along the way and I would be happy to share my thoughts and

by sandy craine (Jun 11)

Hi John,

the meeting will be in central London in mid-July. If you can attend then that would be great. Please let me know and I will add you to the list. The organisers are finalising the

by johnh (Jun 10)

Hi Sandy,
I don't know if my experience, or lack of it, would be of any help. If it is I would be willing to give it a go.
I have had CML for five years and enjoyed an excellent response to Imatinib
Category: Uncategorised

Replies: 10

Last updated: 18 June 2009
sandy craine on 5 June 2009

Category: Uncategorised

Replies: 1

Last updated: 6 June 2009

Over The Wall - activity camps for children affected by chronic/serious diseases
by Parmjit (Jun 6)

My son Max thoroughly enjoyed the experience that the summer camps provide. He was fortunate to get a place on a camp just a year out from his transplant, and we saw a significant change in him on

by sandy craine (Jun 5)

Some of you might be interested in this...
Over The Wall run residential activity camps for children and siblings from 8yrs to 17 yrs old who are affected by a serious or chronic illness. Over The
Category: Uncategorised

Replies: 1

Last updated: 6 June 2009
Ali Loram on 2 June 2009

Category: Uncategorised

Replies: 3

Last updated: 16 June 2009

worried about biopsy
by Barbs (Jun 16)

How did the biopsy go?

by kathy (Jun 2)

Hi there,i found it much better from there to,it wasnt as painful and took half the time,dont worry.xxxx

by L0U (Jun 2)

Hi Ali

I have had this done before & I actually found it less painful,when I was having it done I felt a 'butterfly' sensation in my tummy other than that the usual pushing/pulling...There

by Ali Loram (Jun 2)

Tomorrow I am having another bone marrow biopsy, thats ok, but tomorrow it's going to be taken from my sternum becouse the last 2 via my pelvic ridge didnt produce conclusive results. The consultant
Category: Uncategorised

Replies: 3

Last updated: 16 June 2009
Pennie on 1 June 2009

Category: Uncategorised

Replies: 1

Last updated: 1 June 2009

Latest PCR
by sandy craine (Jun 1)

Dear Pennie,
I am really glad to hear that you are feeling better and your blood sugar and cholesterol levels responding to your diet.
I cannot remember your previous PCR results but I assume this

by Pennie (Jun 1)

Just got latest results - PCR now 0.206. This is on 400mg Tasigna for 18montyhs. Still not getting to that elusive zero!
Thyroid nodules due for biopsy in 2 weeks, cholestrol down to manageable
Category: Uncategorised

Replies: 1

Last updated: 1 June 2009