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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
FAISAL JAVED on 16 August 2017

Category: About CML

Replies: 3

Last updated: 23 August 2017

Suggestion about Treating the CML
by EvaH (Aug 23)

Its called TasiTrack, I used it on Android and its a free download. I think its created by a fellow patient and its certainly easier than setting a bunch of alarms.
I have been writing a CML diary

by grells (Aug 22)

What's the app?!
This is good, firm advice. It must be very difficult not to understand what's going on. I have certainly felt a lot better about my diagnosis since i came here and read

by EvaH (Aug 17)

Dear Faisal

Sorry about your diagnosis and welcome to our club! I was diagnosed in July of 2016 and have taken both Tasigna and Imatanib (Gleevec).
I am going to use very stern words in a

by FAISAL JAVED (Aug 16)

Hello unfortunately i have been diagnosed CML Cronic Phase 2 month Ago.My Doctor Suggested me Tasigna 200MG 2+2 a day.I am now feeling well by using this medicine.but at every morning and
Category: About CML

Replies: 3

Last updated: 23 August 2017
Rebecca Bonnell on 22 August 2017

Category: Side effects

Replies: 0

Last updated: 22 August 2017

Severe dental erosion associated with imatinib mesylate therapy
by Rebecca Bonnell (Aug 22)

I have been having severe problems with my teeth breaking and eroding and i eat healthily and cook proper meals with veg or salad for myself(Trained Chef) and i wondered if this was down to
Category: Side effects

Replies: 0

Last updated: 22 August 2017
walfriedmayer on 17 August 2017

Category: About CML

Replies: 8

Last updated: 19 August 2017

BCR result
by walfriedmayer (Aug 19)

Martin also to you thanks a lot for your answer.

by walfriedmayer (Aug 19)

Dear Ellie, thanks a lot again. I know there are some clinical trails which combines nilotinib and interferon. And from what I read (also your development) there are indications whereby a

by Ellie Regina Grey (Aug 19)

Hi again,
I thought to clarify that in my case, i was administered interferon as an adjuvant immunotherapy to nilotinib in a clinical trial setting. So, it is not a readily available treatment

by walfriedmayer (Aug 19)

Dear all, First of all thanks a lot for your explanations; it cools me a bit down. Bit i read the more it goes down at the beginning of the treatment the higher is the likelyhood to stopp treatment
Category: About CML

Replies: 8

Last updated: 19 August 2017
Hannah Geddes on 24 June 2017

Category: Side effects

Replies: 7

Last updated: 17 August 2017

Headaches - Please help!
by EvaH (Aug 17)

Meditation really helped with my migraines and mine were mostly stress triggered. i suspect the TKI headaches are triggering stress migraines. Check out Dhamma Dipa in UK for introductory 10 day

by sandy craine (Jul 3)

Hannah,
I think if you feel you are not being listened to then you should follow your instinct and ask for a referral... maybe to Bristol and the clinician that Chris has recommended. As there are 5

by cdw5000 (Jul 2)

Hello Hannah,

I'm sorry to hear you're having a bad time on nilotinib. When I first started taking nilotinib I had the same symptoms you describe but they settled relatively quickly. You're

by Hannah Geddes (Jun 30)

Hi Sandy,

Thank you for your reply.
My headaches are very similar to Migraines. When I say I have a migraine often I class that as me being bed bound, unable to move without being sick
Category: Side effects

Replies: 7

Last updated: 17 August 2017
John Gilbert on 23 July 2017

Category: Treating CML

Replies: 2

Last updated: 17 August 2017

PCR 24% but cant get lower
by EvaH (Aug 17)

As a quick positive note, optimal response has an impact on your ability to eventually come off TKIs but doesnt seem to effect long term remission.
However I agree a plateau at 24% might be worth

by sandy craine (Jul 29)

HI John,
Sorry for this late replay as I missed your post. I have a few questions:
1. Where are you being treated? Is it s regional CML expert centre or a District General Hospital?
2. Does your

by John Gilbert (Jul 23)

Ive been on Sprycel for 2 years. The first year I got down to 9% pcr levels and then my platelets started getting low. I did a bone marrow biopsy and I didn't have any mutations and no more blasts
Category: Treating CML

Replies: 2

Last updated: 17 August 2017
Lady Doc on 10 July 2017

Category: Side effects

Replies: 7

Last updated: 17 August 2017

Need some peer support.
by EvaH (Aug 17)

Dear Lady
So very sorry to hear about your troubles. I cannot offer much in the way of medical advice, I have CML and some close friends have fibro and chronic pain and I cant imagine dealing with

by johnw1001 (Jul 14)

Hello,
i read your post with interest as back in the 1980 s I was eventually diagnosed and treated for pulmonary sarcoidosis.Initially I was mis-diagnosed and then mis-treated with 3000mg of strong

by Harsh (Jul 11)

Hi,

Iam sorry for your suffering from pain. I was dx in nov 2016 and started on nilotinib .I had body pain for last 10weeks,but not showing any thing on x ray and scans.It started with left

by sandy craine (Jul 11)

Hi and welcome,
As you are in the US you could try contacting the National CML Society - they advise on all aspects of CML for patients in the US and also on how to connect with others in your area
Category: Side effects

Replies: 7

Last updated: 17 August 2017
Amit on 20 July 2017

Category: Uncategorised

Replies: 3

Last updated: 17 August 2017

Immune System
by EvaH (Aug 17)

Mine is great and I certainly like to put it to the test :D :D

by Amit (Jul 20)

Thx for the inputs David.

by David Fitz (Jul 20)

Amit,
It can depend on the individual. Some TKIs (to some people) can suppress their blood counts a bit. For example my white cell count is always quite low. Not dangerously low or anything, but

by Amit (Jul 20)

Dear All:
Just wanted to know how our immune system is in comparison with people who dont have CML ? Is it more vulnerable or same as anyone else ? Since our respective meds take care of our counts
Category: Uncategorised

Replies: 3

Last updated: 17 August 2017
Andy on 11 August 2017

Category: About CML

Replies: 4

Last updated: 17 August 2017

New to this FORUM
by EvaH (Aug 17)

for your other questions: Life can be pretty normal, however each patient response to treatment and the disease very differently. I'm certainly not living life wrapped up in cotton wool, and yes I

by EvaH (Aug 17)

I really think that stopping the TKI was a weird course of action. If the doctor advised you to do so, I would demand to understand why. If you decided this yourself please GO BACK ON THE MEDS.

by Ellie Regina Grey (Aug 13)

Hello Andy,
Personally, I share similar sentiment on meeting you and everyone here on this forum, while wishing that we could've made all our acquaintances under a much more pleasant circumstance.

by Justine (Aug 11)

Hi Andy,
At my diagnosis in April this year, my WBC was 280K. I too am on 400 Gleevec and as of a couple of weeks ago, my WBC was down to 2.6. It is interesting to me that your doctor suggested
Category: About CML

Replies: 4

Last updated: 17 August 2017
gordyboy on 13 August 2017

Category: Side effects

Replies: 0

Last updated: 13 August 2017

sprycel (dasatinib) side effects
by gordyboy (Aug 13)

have read that intolerance to some side effects are sometimes sorted by interruption of the treatment Be interested to hear if anyone has been in this position.
Regards
Category: Side effects

Replies: 0

Last updated: 13 August 2017
gordyboy on 2 August 2017

Category: Drug-drug interactions

Replies: 2

Last updated: 2 August 2017

imatinib/dasatinib/fluid retention/diarrohea/gout etc..
by gordyboy (Aug 2)

Hi Stuart - thanks for your reply seeing oncologist next Tuesday it will involve a blood test so I'll ask her.
Regards

by Stuart Johnston (Aug 2)

Hi Gordyboy.

Regarding the fluid retention and the gout. Have you been tested for anemia.

I recently requested to be tested found out that I had deficencys in iron and b12 meaning I had

by gordyboy (Aug 2)

Hi Sandy,Had imatinib for 12months with fluid retention (swollen feet) consultant said increase feurosemide to 60mg from 40mg until it reduces.I'm now on dasitinib and have same swollen feet. Is it
Category: Drug-drug interactions

Replies: 2

Last updated: 2 August 2017