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Avril Dailly on 22 August 2017

Category: Uncategorised

Replies: 6

Last updated: 28 September 2017

Taurine supplements
by Tidal-Life (Sep 28)

Ajuvedic medicine is way, way older than school medicine (thousands compared to 100s) so it has a lot of good remedies...only hard thing is to find a good Ayuveda Doc - India or elsewhere.
Anyway, I

by Amit (Sep 19)

I am not sure how much anyone of you believe in Aurvedic oils and how much its available in the UK but the aurvedic oil that i got from kerala india helped me loads and now i don't have any cramps

by Avril Dailly (Aug 28)

Hi Chrissie,

Hadn't heard of magnesium oil. Will look out for that in Holland Barret. Thankyou.

by Avril Dailly (Aug 28)

Thank you John. I haven't tried it yet. Just been reading about it. I had posted before asking if anyone else had noticed they were wheat intolerant since taking imatinib. Since I cut wheat out my
Category: Uncategorised

Replies: 6

Last updated: 28 September 2017
alangent on 14 June 2017

Category: Treating CML

Replies: 7

Last updated: 28 September 2017

Alternatives to imatinib
by AlastairC (Sep 28)

Stewart, just wanted to pick up on your point on whether previous radiotherapy could be a cause of CML. I was Dx 11 years ago with CML, and 30 years ago had 3 weeks of radiotherapy after a diagnosis

by sandy craine (Sep 24)

Hi Stewart,
Yes all the posts on this forum can be viewed by others.
Re: diabetes and nilotinib. There are lots of studies that confirm the connection with nilotinib and diabetes type 2 -

by Stewart Bliss (Sep 22)

Hello Sandy,
I not sure if this post is going to be viewed by other CML patients/sufferers or not...
Briefly I was diagnosed November 2014, and have been on Nilotinib ever since, now a 'young' 73

by sandy craine (Jul 3)

Hi John,
Just a note on diabetes and TKIs.... I think the issue is with nolotinib and diabetes, not with bosutinib.
Sandy
Category: Treating CML

Replies: 7

Last updated: 28 September 2017
Kathyp on 22 September 2017

Category: About CML

Replies: 3

Last updated: 26 September 2017

14 years on glivec
by Kathyp (Sep 26)

Hi, I was 400 for months but it wasn't getting the desired results so i was put on 600, which has worked a treat for 14 years x

by Kathyp (Sep 26)

Hi, I was 400 for months but it wasn't getting the desired results so i was put on 600, which has worked a treat for 14 years x

by sandy craine (Sep 24)

Hi and welcome,
Why are you on the higher dose of imatinib (glivec) ? Do you have access to your test results?
Sandy

by Kathyp (Sep 22)

Hi, not been on this group for along time , I was dx back in 2003 , I'm on 600 mg glivec and I'm doing great , other than this constant fatigue ,weak muscles ,I thought after 14 years that I'd
Category: About CML

Replies: 3

Last updated: 26 September 2017
gordyboy on 25 September 2017

Category: Uncategorised

Replies: 0

Last updated: 25 September 2017

spironolactone
by gordyboy (Sep 25)

Has anyone any information on this water tablet either using,have used,know about it Regards
Category: Uncategorised

Replies: 0

Last updated: 25 September 2017
Basil from RSA on 22 September 2017

Category: About CML

Replies: 2

Last updated: 24 September 2017

A time for reflection
by Basil Jacobs (Sep 24)

Hi Chrissie
I am not the longest survivor off aTKI. There sre others who have been off longer. Holding a record is not important at all but what is important is that it can point to the future for

by chrissie (Sep 22)

A truly inspirational and heartfelt post from you, Basil. I guess you currently hold the record for being TF and holding it. Many congratulations and yes, today my thoughts have turned to CML

by Basil from RSA (Sep 22)

Hi we are again able to celebrate life on this very special day, 22 September.
This year I am going to mainly devote my day on thoughts to those very brave CML warriors who lost the fight against
Category: About CML

Replies: 2

Last updated: 24 September 2017
JulieK on 19 September 2017

Category: Side effects

Replies: 2

Last updated: 23 September 2017

Nilotinib and hair loss
by cdw5000 (Sep 23)

Hi,
this is a known side effect, but I have found side effects to be cyclical - some months my hair is thicker than others. I went to half dose recently (300mg/day) after a long and sustained

by cmljax (Sep 22)

On 600mg Tasigna my hair stopped growing but did not appear to be thinning. When I reduced my dose to 450 mg and then later to 300 mg, the hair started growing again on my head, but not my

by JulieK (Sep 19)

I was diagnosed with CML in June 2017, and started Nilotinib on the 7 July. So far treatment appears to be going well and I am suffering minor side effects (tiredness and intermittent muscle
Category: Side effects

Replies: 2

Last updated: 23 September 2017
Kym on 27 August 2017

Category: Blood tests

Replies: 6

Last updated: 21 September 2017

New to cml could do with advice please
by Kathyp (Sep 21)

Hi, I was diagnosed back in 2003 and it took me along time to come to terms with it and I to had a slow response to glivec , I was put on 600 mg and that has worked its magic . Hope you are ok too I

by Justine (Sep 3)

Hi Kym, I was diagnosed in April. I think denial is a perfectly appropriate response to this disease! As lucky as we are, that this once-fatal disease is now manageable, it is a strange in-between

by johnw1001 (Sep 2)

Hello Kym,
I will not add to what other members of this forum have contributed but perhaps would wish to comment on the issues of "coping" and "support" when diagnosed with a condition like CML.A

by EvaH (Aug 30)

I agree with David. I was 41 at diagnosis last year, my 3 month results were "sub optimal" but my 6 month results were fine and I achieved undectectable very fast (10 months).
There are about 5
Category: Blood tests

Replies: 6

Last updated: 21 September 2017
asifinf on 13 April 2016

Category: Treating CML

Replies: 5

Last updated: 19 September 2017

Nilotinib to Dasatinib switch
by davewell (Sep 19)

For another perspective...
I am on dasatanib. I started out on 140mg, now I am on 100mg.
When starting dasatinib I had a headache that manifested itself for a couple of hours every day. Nothing too

by filawong (Sep 18)

Hi,
Good to find your post here, how are you recently? Can you share any update for us?
I am 34 years old male staying in Macau, my situation is very similar to you, having Nilotinib for

by David Fitz (Apr 16)

Hi again!
Sorry for the short-ish reply. I'm on my phone replying so typing not great.
Pleural effusion is zero issue for me. It does effect some people, but when it does happen it's

by asifinf (Apr 15)

Thank you very much or the prompt response David.
Yea, the mutation test has just been done; I am awaiting the result now.
One important thing I would like to know about Dasatinib is the side
Category: Treating CML

Replies: 5

Last updated: 19 September 2017
matthew.hulbert on 3 August 2017

Category: Drug-drug interactions

Replies: 4

Last updated: 13 September 2017

Malaria
by RodM (Sep 13)

I used Doxycycline as an alternative, for a trip to Indonesia, I had no issues with it.

by EvaH (Aug 17)

Many may not agree, but I really have doubts about taking malaria prophlaxis at all and especially for a short trip. I lived in malaria zones for years (on and off) and indeed was in one when I was

by MartinZA (Aug 16)

Hi Matthew
I took Malarone myself when on dasatinib and had no serious side effects; however, there was a rash that appeared all over my body two days into using the Malarone. It was not

by David Fitz (Aug 3)

Malarone is fine. I've taken it myself with dasatinib, but there is no issue with it and imatinib either.
https://www.drugs.com/interactions-check.php?drug_list=1321-0,278-129
Category: Drug-drug interactions

Replies: 4

Last updated: 13 September 2017
David Fitz on 5 September 2017

Category: Treating CML

Replies: 7

Last updated: 13 September 2017

Dropping to 70mg
by Karinne (Sep 11)

Congratulations on your decision!!!!
Let us know about your progress. How often are you going to do your pcr test?

by alliswell (Sep 8)

Congratulations . very good news indeed .
i hope you can keep your score at same level .
will be following , keep us updated ..
Good luck

by chrissie (Sep 8)

Wow. Great news, David. Hopefully, after 2 years om MR4 you will hold it. Keep us posted.
Best
Chrissie

by MartinZA (Sep 7)

That's wonderful news, David! Well done.
Category: Treating CML

Replies: 7

Last updated: 13 September 2017
chrissie on 1 September 2017

Category: Uncategorised

Replies: 2

Last updated: 8 September 2017

Such a loss to the blood cancer world
by nigel (Sep 8)

A tribute page for Professor Holyoak has been made by th CML advocates network. The link below will take you there. Please add a tribute to thank her for all she has done for us CML patients should

by sandy craine (Sep 6)

Tessa Holyoake Memorial Service.
A memorial service for Tessa is being held at the University of Glasgow Chapel at 5pm on Friday 8th September. All are welcome to attend the memorial service. Tessa

by chrissie (Sep 1)

http://www.gla.ac.uk/myglasgow/news/headline_546625_en.html
too young.
Chrissie
Category: Uncategorised

Replies: 2

Last updated: 8 September 2017
Justine on 3 September 2017

Category: Side effects

Replies: 5

Last updated: 5 September 2017

Appearance
by Justine (Sep 5)

Oh and I did try eye drops and it helped!

by Justine (Sep 5)

Thank you John, I appreciate those suggestions. Part of my eye problem may be that I live in the Western US and we are having bad smoke from forest fires. The air is pretty bad and I am hopeful that

by Justine (Sep 5)

Thank you, Olivia. I do wear sunglasses when outside but may look for some lighter shaded ones to wear indoors. Appreciate your response.
Justine

by johnw1001 (Sep 4)

Hi Justine,
I have had this problem for 11 years and eyelid odema is common side effect of Imatinib/Glivec.
I look as if I have had no sleep for a week or as if I have been crying all night or
Category: Side effects

Replies: 5

Last updated: 5 September 2017
grells on 21 August 2017

Category: Uncategorised

Replies: 4

Last updated: 4 September 2017

Your name in lights - the event!
by EvaH (Sep 4)

I'm going to come along to happenstance. I'll be the one with a dark grey backpack with red straps!

by sandy craine (Aug 26)

‘Your Name in Lights’ is the formal title of the event ‘Make Blood Cancer Visible’ - a public awareness campaign to educate the public about blood cancers in general and particularly

by David Fitz (Aug 25)

I'm taking part in it too, and will be there. Will pop along during my (extended) lunch hour.
David.

by EvaH (Aug 23)

Oh, I'll be in London then. Whats the details? Do I have to sign up before?
Category: Uncategorised

Replies: 4

Last updated: 4 September 2017
johnw1001 on 1 September 2017

Category: Blood tests

Replies: 1

Last updated: 3 September 2017

The meaning of an undetectable PCR
by David Fitz (Sep 3)

Hi John,
My understanding is that MR5 is at about the dependable limits of current advanced kit. An old PCR machine in a lab might find a result "undetectable" which a modern one might find is only

by johnw1001 (Sep 1)

All,
I am keen to find out if anyone has explored the meaning of a PCR of undetectable .
August 2016 my PCR was 0.266 and the latest dated 2017 is 0.000 undetectable ;that is after
Category: Blood tests

Replies: 1

Last updated: 3 September 2017
alanmc on 10 August 2017

Category: Side effects

Replies: 4

Last updated: 2 September 2017

Joint/muscle pain ups the ante after 5 years
by johnw1001 (Sep 2)

Hi Alan,
I suggest you ask your doctor to check your bloods for CK-Creatine Kinase which if elevated indicates drug side effects causing myositis or inflammation of the muscles
John

by Stuart Johnston (Aug 11)

If it helps I had arthritis before cml. Regarding cramps I find eating bananas the best thing to stop them and for joint pain I manage my diet avoid foods out of the nightshade group. Eat healthy

by alanmc (Aug 11)

Hi,
I'm still on Glivec. They seem to still be supplying us with it here in Ireland.

by Stuart Johnston (Aug 11)

Hi Alan

Has the joint pain started since you changed onto the generic Imatinib? Or prior to changing.
Category: Side effects

Replies: 4

Last updated: 2 September 2017
thaseemthaj on 31 August 2017

Category: Organising your life

Replies: 5

Last updated: 1 September 2017

Timing of Imatinib
by johnw1001 (Sep 1)

Hi there,
I am on 600mg of Glivec and have at times found this quite tough.My suggestion would be to take it with food and also two glasses of water.I take mine in the middle of the day but always

by thaseemthaj (Aug 31)

Thanks Justine. Many blessings to you and your family.
I will definitely request her to log in here and see. There is a lot of positivity in this group.
Thanks and best Regards,
Thaseem

by thaseemthaj (Aug 31)

Thanks Amit. Yes, the enzyme levels have normalized since then. It was indeed the SGOT and SGPT levels. I will convey this to her and hope she finds the newer option more tolerable.
Many blessings

by Justine (Aug 31)

I hope she will feel better soon. I was diagnosed in April so am still new to all this, but I've tried Gleevec in the morning and in the evening, and for me it works best in the morning. I was
Category: Organising your life

Replies: 5

Last updated: 1 September 2017
Tricky109 on 29 August 2017

Category: Uncategorised

Replies: 4

Last updated: 29 August 2017

Pcr results
by Tricky109 (Aug 29)

Thank you David thats a great help!! Yes my results on IS scale I believe.
Thank you again for taking the time to reply.

by Tricky109 (Aug 29)

Thank you Chrissie!

by David Fitz (Aug 29)

Hi there,
One question ... do you know if your results are reported on the International Scale or not?
European Leukaemia Net have a set of standards which define an optimal response, a warning or a

by chrissie (Aug 29)

Looks really good to me. You are in MMR which is a safe place to be. No sign of any resistance with these results. It took me 7 years to get below MMR down to MR4 which is one extra zero . Relax -
Category: Uncategorised

Replies: 4

Last updated: 29 August 2017
Karinne on 20 August 2017

Category: Drug-drug interactions

Replies: 3

Last updated: 27 August 2017

Niacin 500 mg twice a day
by sandy craine (Aug 27)

You might want to read about niacin (B3) here: http://www.doctoryourself.com/JOM1.html
B3 is a crucial vitamin for health in general - as are all of the B Vits. Niacin or a lack of it is also

by Karinne (Aug 22)

Thank you very much. You are very wise. I will search for another way.
Best,

by johnw1001 (Aug 21)

Hi Karrine,
The reason I reply to you is that I was considering niacin or Vitamin B3 as my uric acid is low and this would push it up nearer to normal.Niacin it seems occurs naturally in

by Karinne (Aug 20)

Hello everybody,
I would like to take Niacin (to decrease my cholesterol) at 500 mg twice a day. Did anybody knows if it is safe with my 100 mg of Sprycel? The field is very confusing when
Category: Drug-drug interactions

Replies: 3

Last updated: 27 August 2017
ClaudiaSS on 11 August 2017

Category: Children & young people

Replies: 2

Last updated: 26 August 2017

Newly diagnosed 16yr old
by sandy craine (Aug 26)

Hi Claudia,
So sorry your son has been diagnosed with CML... a rare occurrence for his age group. Nevertheless, the outlook is good and it seems from what you say he is responding to therapy with

by Justine (Aug 11)

Hi Claudia,
As a mom my heart goes out to you. Many blessings to you and your son. Thank goodness for Glivec/Gleevec! I had bone pain and cramps for a while but Ibuprofen really helped. These

by ClaudiaSS (Aug 11)

Hi. My name is Claudia and I am the mother of a 16yr old, Andres, diagnosed on July 20th. We suffered a severe crisis as his white blood cell count rose to 600,000u and it derived on
Category: Children & young people

Replies: 2

Last updated: 26 August 2017
Amit on 21 August 2017

Category: Side effects

Replies: 4

Last updated: 23 August 2017

Sgpt(ALT) , SGOT (AST)
by EvaH (Aug 23)

How frequently are the checks? I was getting weekly bloods at your stage.
Though I never had an issue with liver, my platlets shot up at some point after diagnosis and then came back to normal.

by Amit (Aug 21)

2 months 10 days since i have been disgnosed with CML but this liver issue has only come up in my blood checkup yesterday.

by Amit (Aug 21)

2 months and 10 days.

by EvaH (Aug 21)

This is liver transaminase. How long since you were diagnosed?
Category: Side effects

Replies: 4

Last updated: 23 August 2017