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sandy craine on 27 February 2018

Category: Food & fitness

Replies: 7

Last updated: 3 March 2018

Adding Curcumin?
by Bronson_CLE (Mar 3)

Knowing that I won't die from CML but from the COPD and that the benefits from curcumin helps both is definitely a plus. I appreciate all your feedback.
Thank you!

by scuba (Mar 2)

One additional note - although it was my CML that motivated me to take Curcumin. The main benefit I am experiencing with Curmin is the elimination of arthritis and my skin has changed dramatically.

by Bronson_CLE (Mar 2)

Thank you Scuba for the reply.

by scuba (Mar 1)

Hi Kathy,
Research has shown that 8 grams of standarized Curcumin is needed per day to effect cancer cells in vivo.
Some Curcumin formulations boast of higher bio-availability (w/ bioperine ...aka
Category: Food & fitness

Replies: 7

Last updated: 3 March 2018
David Fitz on 1 March 2018

Category: Uncategorised

Replies: 1

Last updated: 1 March 2018

Help CML Support by registering with AmazonSmile
by sandy craine (Mar 1)

Thanks David,
I have signed up - it's easy to do.
Sandy

by David Fitz (Mar 1)

We have recently signed up with AmazonSmile - a charitable programme Amazon run to donate a small amount of your purchase price to registered charities. This is open only to people who shop on
Category: Uncategorised

Replies: 1

Last updated: 1 March 2018
Sally12 on 10 November 2017

Category: Children & young people

Replies: 4

Last updated: 28 February 2018

Teens with cml
by Irishmammy (Feb 28)

Hello and sorry to hear about your daughter. I'm a mum of an 8 year old who is on Imatinab. She is doing well TG. Yes the facebook group is quite good but I really must stress that in the early days

by David Fitz (Feb 28)

To send a private message, click on the person's username next to their post. There should be a "contact" option on the next page that loads, and you can send a message from there.
We are looking in

by partyofmann (Feb 28)

Hey Sally! I too have a 14 year old daughter that was diagnosed right before her 13th birthday. Its incredibility stressful for me lol, but she is handling it quite well. If you

by sandy craine (Nov 11)

Hi,
It is rare in young people - pretty rare disease in adults too (1 per 100,000). You may want to take a look at the Children with CML group on facebook. At least you can then talk to other
Category: Children & young people

Replies: 4

Last updated: 28 February 2018
Riggered on 28 February 2018

Category: Uncategorised

Replies: 1

Last updated: 28 February 2018

New arrival
by scuba (Feb 28)

Hi Riggered - Good to see you over here.
I check the new LLS site from time to time, but prefer this site. As more of you come over, it will add to the rich diversity of experiences and insight

by Riggered (Feb 28)

Hi all,
CML Support UK looks like a great resource. I am happy to recognize a lot of people from the previous US - LLS forum. I'm not sure where to jump in here, so I'm starting a new
Category: Uncategorised

Replies: 1

Last updated: 28 February 2018
Christine R on 28 February 2018

Category: Treating CML

Replies: 2

Last updated: 28 February 2018

Nilotinib plus proposed chemo for breast cancer
by Christine R (Feb 28)

Thank you.
i have sent a list of questions to the Hamersmith this morning as they are much more pro-active than the oncologist. Just trying to get my head around the whole thing at the moment

by sandy craine (Feb 28)

Hi Christine,
I am sorry to hear you have breast cancer as well as CML. I understand why you would be very concerned about stopping your TKI while undergoing further chemotherapy for the BC. I would

by Christine R (Feb 28)

Hi
i had breast cancer in 1998 and 2001 followed by CML diagnosed in 2003. Currently on Nilotinib and levels are all good. i have now been daignosed with more breast cancer which is HER2+ as well as
Category: Treating CML

Replies: 2

Last updated: 28 February 2018
ruddoug09 on 26 February 2018

Category: Getting help

Replies: 1

Last updated: 28 February 2018

STIM - any stories?
by Richard42 (Feb 28)

Hi there
I was diagnosed in 2009 at 42, with two young children at the time. My PCR quickly became essentially zero so when the trial became available, I was one of the first Hammersmith

by ruddoug09 (Feb 26)

Hi all

Ages since I've posted as the CML is just something that is there now, nothing to worry about. My PCR results for the last few years have been 0.00 to 0.02, with the last 5
Category: Getting help

Replies: 1

Last updated: 28 February 2018
Romo on 28 February 2018

Category: Uncategorised

Replies: 0

Last updated: 28 February 2018

Dasatinib dose management for the treatment of chronic myeloid leukemia
by Romo (Feb 28)

http://onlinelibrary.wiley.com/doi/10.1002/cncr.31232/full

Romo
Category: Uncategorised

Replies: 0

Last updated: 28 February 2018
AF on 7 February 2018

Category: Uncategorised

Replies: 14

Last updated: 27 February 2018

New CML - fatigue and low hemoglobin
by loafer (Feb 27)

I have been taking a 500mg Tumeric/Cercumin capsule, my latest blood work from 2 February 2018 were all normal range and a 0.134 PCR. I did make one rather large mistake, the blood draw was on a

by iffat (Feb 27)

Hello

I would like to know what kind of curcumin supplement you took please? I have low blood count as well.

Thanks

by LouiseS (Feb 13)

Hi Af
When my husband was diagnosed his WBC was at 200k and it rose another 20k before the Sprycel kicked in. It’s now at 4 k and has been in the normal range since about 3 weeks in. His platelets

by T and M (Feb 12)

Looks like you have been getting great advice. When my husband Tim was first diagnosed in September 2017 (age 46) his hemoglobin was 112 (140 being bottom end of normal). He has been on
Category: Uncategorised

Replies: 14

Last updated: 27 February 2018
Libby on 26 February 2018

Category: Other conditions

Replies: 1

Last updated: 27 February 2018

Looking for others with Goitre/Nodules on thyroid
by sandy craine (Feb 27)

I agree with your very legitimate worries about radioactive iodine and I am not at all sure of the logic underlying the clinical advice you have received from specialist clinicians, your

by Libby (Feb 26)

I was diagnosed CML in Oct 17 with WBC of 330. I'm on Dasatinib 100. I was diagnosed after getting yet another serious chest infection and my GP suggested I have a full blood count.
For
Category: Other conditions

Replies: 1

Last updated: 27 February 2018
Lesley Margetts on 24 February 2018

Category: Uncategorised

Replies: 13

Last updated: 26 February 2018

Recent diagnosis CML
by Lesley Margetts (Feb 26)

Thank you for sharing with me

by LouiseS (Feb 26)

Hi Lesley
welcome to this forum. My husband was diagnosed at the end of Sept. He has been on Sprycel ( dasatinib) ever since. The first month to six weeks was very emotional. I think although he had

by T and M (Feb 25)

I hear where you are coming from Lesley. It is wise to have options on the table if you need to resort to them. You may have very little or no side effect; never hurts to hope for

by Lesley Margetts (Feb 25)

Thank you for the information, my daughter will be coming with me, she is a qualified Biomedical Scientist although not specialising in Bloods, her knowledge is very useful. I will be attending the
Category: Uncategorised

Replies: 13

Last updated: 26 February 2018
sandy craine on 25 February 2018

Category: About CML

Replies: 0

Last updated: 21 March 2018

New to Diagnosis? 10 Facts About CML
by sandy craine (Feb 25)

https://www.cmlsupport.org.uk/section/10-facts-about-cml
Category: About CML

Replies: 0

Last updated: 21 March 2018
AndrewRego on 20 February 2018

Category: Blood tests

Replies: 6

Last updated: 24 February 2018

Poor three month PCR
by T and M (Feb 24)

We know the feeling as well. My husband was dianosed in September 2017 and he was at 90% and at 2 months he was 34% and at 3 months he was 36%. Very disappointing and it was talked about

by AndrewRego (Feb 23)

Thank you, everyone, for all your positive responses. I know it's probably a cliche to say but finding this forum has been such a huge boost for me and I can't thank everyone enough.
In terms

by SteveJT (Feb 22)

Hi Andrew,

I had exactly your experience back in December 2014.

I'd been dxd in September 2014. I was just starting to think I was 'getting to grips' with having CML. I had a very

by sandy craine (Feb 21)

Hi Andrew and welcome to this forum.
Yes there are many of us who did not have optimal PCR results when first on TKi treatment. I know this first PCR result must be disappointing for you, however
Category: Blood tests

Replies: 6

Last updated: 24 February 2018
AF on 22 February 2018

Category: Uncategorised

Replies: 3

Last updated: 24 February 2018

CML Survival Rates & Life Expectency
by scuba (Feb 24)

The reality is CML patients who respond to TKI therapy (FISH = zero; CCyR) will not die from CML. Won't happen.
In fact - CML patients who respond should be more concerned with diet and overall

by cmljax (Feb 24)

The numbers you are looking at have at least some pre-TKI population in them. Take a look at these 2 articles for example, especially the Swedish study
http://ascopubs.org/doi/full/10.

by LouiseS (Feb 22)

AF , I remember when my husband was diagnosed looking at the data available and thinking oh that doesn’t look so great. I was also scared by some of the Facebook CML sites where people were posting

by AF (Feb 22)

I understand that the data set is still relatively fresh since TKIs haven’t been around for that long but does anyone have any reliable data, case studies, reports, etc on average survival rates and
Category: Uncategorised

Replies: 3

Last updated: 24 February 2018
chevyflame on 2 February 2018

Category: Side effects

Replies: 11

Last updated: 23 February 2018

Spyrcel and Pleural Effusion
by chevyflame (Feb 23)

I'm hoping that the pleural effusion will gradually dry up. Except for a brief bout with pneumonia, the pleural fluid is on a downward arc, The other side effects I have are tolerable and much less

by chevyflame (Feb 23)

Sandy,

Thank you for the solid information in your post. I've just spent three days in the hospital because my breathing and pleural fluid rapidly worsened. My oncologist,

by cmljax (Feb 18)

I have been on Tasigna 150 mg/day since reaching PCRU 5 months ago. I still have some side effects (occasional benign heart arrhyhtmia which is helped by a little xanax of all things) and mild

by sandy craine (Feb 18)

Hi and welcome to our forum,
I share your concern that you have a diagnosis of Long QT syndrome and are being treated with nilotinib which, from a brief search, is contraindicated for this condition
Category: Side effects

Replies: 11

Last updated: 23 February 2018
AF on 18 February 2018

Category: Uncategorised

Replies: 8

Last updated: 22 February 2018

Sprycel Side Effects
by scuba (Feb 22)

Thanks for the correction - must be the fast I am on )#(@)@!_(! ... not reading straight.

by AF (Feb 22)

Scuba MPV is mean plalet volume it is the size of platlets. I think the one you are referring to is RDW

by scuba (Feb 22)

You are doing well. Platelet count rising to mid-normal levels is a good sign.
You are very early in treatment. Your blood system has to regenerate from what was a largely leukemic one to more

by AF (Feb 22)

Received my weekly CBC results. Platelets are rising (now at 227 x 10^9 /L). Hemoglobin (113 g/L), absolute neutrophils (1.8 x 10^9/L) and RBC (3.6 x 10^12/L) are stabilizing. WBC has dropped
Category: Uncategorised

Replies: 8

Last updated: 22 February 2018
Sue.J on 23 October 2017

Category: Organising your life

Replies: 9

Last updated: 21 February 2018

Holiday
by David Fitz (Feb 21)

Hi there,
Are you UK based? Many member of this forum have had success with World First. Perhaps try there? Individual circumstances with CML vary, of course, so it may or may not be a good idea to

by Colin1964 (Feb 21)

Hi my husband was diagnosed in December 2017 and we were planning to go to Barbados for Christmas 2018. I am trying to get holiday insurance sorted before we book but the quotes are in excess of £

by MartinZA (Oct 25)

Hi everyone
I just thought I'd weigh in on this topic... Travelling is my life and is the thing that helped me cope best after my diagnosis, and I refuse to let my CML prevent me from doing what I

by sue. R (Oct 24)

I was diagnosed in June, like you I had a week holiday plan for Iceland, I was hospitalized, treated, came home. few days before vacation, nose bleed, hospitalized again, received blood,
Category: Organising your life

Replies: 9

Last updated: 21 February 2018
loafer on 21 February 2018

Category: Uncategorised

Replies: 2

Last updated: 21 February 2018

Latest PCR
by David Fitz (Feb 21)

Congratulations. Right on the cusp of MMR!

by scuba (Feb 21)

Actually - Dasatinib (Sprycel) may actually help/facilitate bone formation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087319/
I suspect poor healing may be more to diet and genetics. Vitamin D

by loafer (Feb 21)

So I just received my latest PCR, 0.134 IS, down .048 since 11/2017 now the slow downward spiral starts, I am living on 100mg Sprycel and doing ok with it.
I do have a question 6 months prior to the
Category: Uncategorised

Replies: 2

Last updated: 21 February 2018
Sandrea on 19 February 2018

Category: Clinical trials

Replies: 1

Last updated: 21 February 2018

A new drug on the horizon?
by sandy craine (Feb 21)

Hi Sandrea,
Yes this TKI is akin to ponatinib in that it targets the 'gate-keeper' multi-drug resistant mutation T315i. The number of patients who carry this mutation at diagnosis is very small, but

by Sandrea (Feb 19)

"Sun K706 is a novel tyrosine kinase inhibitor, intended for the treatment of chronic myelogenous leukemia (CML). While currently available oral drugs like Imatinib (Gleevec®), Nilotinib (
Category: Clinical trials

Replies: 1

Last updated: 21 February 2018
Lucas on 19 February 2018

Category: Food & fitness

Replies: 3

Last updated: 20 February 2018

Lipase rollercoaster
by Lucas (Feb 20)

Thank you, David and Sandy. i read that paper last year, when my lipase started to elevate. Funny thing is that the patient with crazy levels, even in lower dose, still have high lipase. I'm talking

by sandy craine (Feb 20)

Hi Lucas,
David's link to the paper on elevation in pancreatic enzymes experienced by some patients who are treated with nilotinib, is a very informative read. Thanks David- I have put this on

by David Fitz (Feb 19)

Hi Lucas -
I presume you found this paper? Seems like the issues you have are, if not common, quite possibly linked to nilotinib..
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791949/pdf/

by Lucas (Feb 19)

Hey, guys! Hope everybody's fine! I just want to share my lipase history with you. Well, since january/2017 i'm having problems with high lipase, and amylase. Sometimes very, very high, like four
Category: Food & fitness

Replies: 3

Last updated: 20 February 2018
dadbags on 20 February 2018

Category: Uncategorised

Replies: 0

Last updated: 20 February 2018

helping thyself
by dadbags (Feb 20)

romo--hope ur doing good--1000%u as a patient must take part in your own healing process--diet-exercise-mental alertness&awareness-u cant say JESUS,GOD,MOHAMMED,BUDAH--WHY ME--U have to get off
Category: Uncategorised

Replies: 0

Last updated: 20 February 2018