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Clarannette on 3 November 2018

Category: Side effects

Replies: 1

Last updated: 6 November 2018

Chilblains x CML
by sandy craine (Nov 6)

Hi and welcome,
You need to keep your extremities warm and try to keep the blood flow going- this means massage and exercise might help. Keep warm and try not to expose your skin to extremes of

by Clarannette (Nov 3)

Hello everyone,
New to this forum. :)
I have had CML for about two years and I noticed that I have developed Chilblains. Chilblains is when you are exposed to the cold and/or damp it may
Category: Side effects

Replies: 1

Last updated: 6 November 2018
mikemoss52 on 2 November 2018

Category: Getting help

Replies: 1

Last updated: 6 November 2018

Needing Advice on Dasatanib Deescalation/Cessation.
by sandy craine (Nov 6)

Hi Mike,
From a brief online search, it seems to me that your dad has had a very good (amazing) response to first-line treatment with dasatinib+HYPER CVAD.
MD Anderson is obviously doing some

by mikemoss52 (Nov 2)

Disclaimer, I am writing for my Father, and he has ALL PH+, but this seems to be a great forum and figured I could hopefully be pointed in the right direction. My Dad has been on Dasatanib
Category: Getting help

Replies: 1

Last updated: 6 November 2018
Nimbus2 on 4 November 2018

Category: Uncategorised

Replies: 3

Last updated: 5 November 2018

CML statistics
by r06ue1 (Nov 5)

Those statistics are pretty accurate for deaths (though a bit low) for the US. In previous years the deaths have been around 25% I believe. You have to remember that many people do not

by Nimbus2 (Nov 5)

I did wonder.
It would also seem that in the USA, a CML diagnosis per person is more than twice as twice likely as in the UK. Is this because the British NHS is poor in detecting CML or that

by cmljax (Nov 5)

Digging deeper into both of the provided links, it looks to me as if the survival statistics are out of date and (hopefully) underestimated.

by Nimbus2 (Nov 4)

The years for the data do not correlate precisely, but the UK and USA statistics in respect of newly diagnosed in a year and deaths in a year differ in proportion.
CML UK:
diagnosed in a year 742
Category: Uncategorised

Replies: 3

Last updated: 5 November 2018
MartinZA on 29 October 2018

Category: Drug-food interactions

Replies: 2

Last updated: 31 October 2018

Beefeater 24 gin
by MartinZA (Oct 31)

Hi John
Thank you so much for your extremely detailed reply to my post! I so appreciate the time and trouble you have taken to reply to me - I have been able to locate every article you

by johnw1001 (Oct 30)

Hi Martin,
I found your post thought provoking and having just had a disturbed night with cramp as a side effect from imatinib would like to add a few comments Over the 12 years that I have been on

by MartinZA (Oct 29)

Hi everyone
I have been on imatinib 400mg since May and seem to be doing well without too many side effects. Muscle cramps are controlled with tonic water and calcium/magnesium supplements.
Category: Drug-food interactions

Replies: 2

Last updated: 31 October 2018
JacqJohn on 6 June 2018

Category: Side effects

Replies: 9

Last updated: 30 October 2018

Water Retention & Imatinib
by kat73 (Oct 30)

JaqJohn - Your course on Gleevec is familiar to a lot of us, including me. I was alarmed at how completely different I felt, almost immediately, on Gleevec. I, too, was given allopurinol

by Barry Leier (Oct 29)

Hi John,
I've been on Gleevec 400 mg. since 2012. I've had a complete molecular response since 2015. Watch your Creatine and eGFR numbers closely. They can be a sign of kidney issues. Going to stop

by tom888 (Jun 16)

With regard to conservative treatment over drugs ... the following can help. Lift your feet above the height of your heart as you lie down.
Exercise your feet. This helps the fluid get better from

by MartinZA (Jun 14)

Hi John / Jacq
I guess we have become like a walking dispensary! We take one thing to control one problem and this causes another problem that needs a different drug. Ah, the joys of
Category: Side effects

Replies: 9

Last updated: 30 October 2018
sathish on 28 October 2018

Category: Blood tests

Replies: 3

Last updated: 30 October 2018

pcr result-.0017 with 56% bcr-abl positive.
by sathish (Oct 30)

Thank you kirk for your reply.i think i just became imatinib resistant.now shifted to nilotinib.

by JohnFromChicago (Oct 29)

Do you have numbers reported like this...

Copies of BCR-ABL per 1000 copies of ABL: 0.33
...this correlated to roughly .04% PCR at least on my test results

by RC Kirk (Oct 29)

Hello Sathish,
Welcome to the CML support group. It's hard to say if your CML is expanding or if your test results might be inaccurate. Have your tests always been performed by the same

by sathish (Oct 28)

hello everyone,im new and this is first post.i was diagnosed when i was 28 years old and was taking imatinib 400 mg.my recent pcr result is .0017 with 56% positive cml presence.is this possible.but
Category: Blood tests

Replies: 3

Last updated: 30 October 2018
Tanya Cuffe on 28 October 2018

Category: Uncategorised

Replies: 4

Last updated: 30 October 2018

CML questions
by Tanya Cuffe (Oct 30)

Awesome Kat,that’s great to hear and thank you:)

by kat73 (Oct 29)

I agree with David. You listed the same troubles I had with Gleevec. Most often, Gleevec people seem to be plagued with muscle and bone pain and cramps, but my complaints were only the

by Tanya Cuffe (Oct 28)

Thank you David,will discuss that with doc nxt month.

by David Fitz (Oct 28)

Tanya,
Sometimes one is better than the other for different people, but both are excellent drugs.
If you have other health issues, that might drive the decision to one or other.
But all
Category: Uncategorised

Replies: 4

Last updated: 30 October 2018
Richard on 27 October 2018

Category: Uncategorised

Replies: 4

Last updated: 29 October 2018

imatinib capsule
by Richard (Oct 29)

Thanks for your reply. These are Cipla, and yes, they are very large: 25mm long, and 7mm diameter. I think that I will try the yoghurt method! However, I have to take about 8 other tablets at the

by Gitel (Oct 28)

I do not take Imatinib, but, I have found huge difficult tablets can be swallowed in a large teaspoon of applesauce. Down they go. I didn’t learn this till I was past 70. Hope this helps.

by chrissie (Oct 28)

Hi Richard
I, also, have trouble swallowing large tablets and I have heard that the Cipla 400mgs capsules are enormous. Someone suggested taking the tablet with a spoonful of yoghurt and others have

by Felix (Oct 27)

Hi, some capsules are very large aren’t they ,they are usually brown and have a horrible taste and smell.I have been given a new Imatinib capsule now which is by INTRAPHARM and they are so
Category: Uncategorised

Replies: 4

Last updated: 29 October 2018
Gitel on 25 October 2018

Category: Uncategorised

Replies: 3

Last updated: 5 September 2022

Fractured tooth, pulling a tooth
by Gitel (Oct 27)

Prepared for the worst and I got the best...I am fortunate. Tooth was dying, not fractured. Excellent endodontist. He cleaned it out, did a root canal and put me on a week of Amoxicillan

by Gitel (Oct 25)

Thank you for the excellent and complete reply. I have checked with the oncologist and he said platelets over 100 were ok.
I will know more tomorrow. I am hoping for a root canal rather

by johnw1001 (Oct 25)

Hi Gitel,
I have in the last 3 months gone through a similar situation.I was dx with CML over 12 years ago and have been on imatinib/Glivec and am currently on a high dose of 600mg.The normal

by Gitel (Oct 25)

My dentist suspects a fractured tooth which either needs a root canal to save it, or if the fracture is too deep, might need to be pulled.
any advice? I will of course consult Onco.
i was dx
Category: Uncategorised

Replies: 3

Last updated: 5 September 2022
JohnFromChicago on 8 June 2018

Category: Uncategorised

Replies: 22

Last updated: 27 October 2018

PCR results .03 to .33
by Isla D (Oct 27)

Fantastic news about your BCR ABL levels John! Thanks so much for posting about your experience and including your history too.
I think a lot of younger folk need a higher dose. I'm 51 so probably

by JohnFromChicago (Oct 26)

Another test and still trending downward back on 100mg, very happy. I am back down to 0.03%, maybe I wont ever be PCRU or be able to be on a reduced dose but as long as I am alive I am happy with

by LouiseS (Aug 1)

Glad you are back on track John!
Paul started back on 70 mg last night. He was already experiencing myelosuppression on 50mg, so I am going to be anxious to see how it goes.

by JohnFromChicago (Aug 1)

In my case I have never had myelosuppression. My platelets dropped slightly below 140 on a few occasions however I do no not think that would be considered myelosuppression. I think this might
Category: Uncategorised

Replies: 22

Last updated: 27 October 2018
dadbags on 23 October 2018

Category: Uncategorised

Replies: 3

Last updated: 26 October 2018

gleevac free 6mo
by cmljax (Oct 26)

Way to go - happy for you. Like Kat, I would like to know your PCR history for at least the last 3 years prior to stopping. Also, the protocol for PCR testing is every month for at least

by chrissie (Oct 26)

Brilliant news. Congratulations. I won't mention grapefruit!
best
Chrissie

by kat73 (Oct 23)

This is great! What encouraging news. Were you and are you at PCRU? Just curious. I think you must have the record on this forum - 17 years! Holy Cow. Congrats.

by dadbags (Oct 23)

hi everyone-well here i am 6mo no gleevac-all blood counts normal-liver,kidneys,bp,etc all normal-well its been over 17years since july3,2001-blood counts normal since 2003-still giving me blood
Category: Uncategorised

Replies: 3

Last updated: 26 October 2018
Felix on 18 October 2018

Category: Side effects

Replies: 3

Last updated: 24 October 2018

Mouth problems on Imatinib
by David Fitz (Oct 24)

Family dentists, as opposed to hospital dental surgeons, of course don't see as much of the medical spectrum just by virtue of who presents. They're being cautious, which is the right thing.
The

by Felix (Oct 20)

Hi David ,thank you so much for your reply.It is as your sister says between my upper and lower teeth .My dentist has never treated anyone with CML before so I am really hoping she is being over

by David Fitz (Oct 19)

Hi Denise,
I spoke to my sister, who's a dental surgeon, and she said that lines along the inside of the cheek that go from back to front roughly where the two sets of teeth meet are very common in

by Felix (Oct 18)

Hello all,I am a bit worried.A few weeks ago I bit the inside of my cheek when eating I haven’t done that for years and within a few seconds I had bitten the other side .When I looked to see what
Category: Side effects

Replies: 3

Last updated: 24 October 2018
LabNoir on 18 October 2018

Category: Drug-drug interactions

Replies: 1

Last updated: 22 October 2018

Very high Eosinophil
by RC Kirk (Oct 22)

Hi Vince,
Sorry, I don't know anything about eosinophils. I was just curious about the venetoclax. Are you in a trial study? You had mentioned in another post that your doc wasn't

by LabNoir (Oct 18)

Hi Everyone
Thanks David for letting me join.
Today is 6 month since I took Dasatinib and I went for a routine 6 month consultation but they found my Eosinophil have skyrocket to 2 (
Category: Drug-drug interactions

Replies: 1

Last updated: 22 October 2018
derren on 15 July 2008

Category: Uncategorised

Replies: 14

Last updated: 21 October 2018

Travel Insurance Good news
by David Fitz (Oct 21)

Perhaps this one?
https://www.cmlsupport.org.uk/section/travelling-cml

by DKurup (Oct 21)

Hi Sandy,
This link is not working anymore, and has possibly moved.
http://www.cmlsupport.org.uk/faq_travelfaq
Could you pls update with the latest link ?
Thank you,
K

by sandy craine (Aug 8)

Hi Richard..... have you or others tried any of the companies from the recently updated list on our Travel FAQ and if so do you have feedback? I try to keep the companies on the travel FAQ list

by Richard (Aug 7)

Hi Derren
This is Medici Travel again.
They will not cover me for CML, even though I have been in complete remission, on Glivec, for 7 years. They also declined to cover me for IHD, MI and angina,
Category: Uncategorised

Replies: 14

Last updated: 21 October 2018
devenavani on 25 September 2018

Category: Uncategorised

Replies: 25

Last updated: 20 October 2018

Running out of options
by RC Kirk (Oct 20)

Thanks David,
I put "Early Results of Lower Dose Dasatinib (50 mg Daily) as Frontline Therapy for Newly Diagnosed Chronic-Phase Chronic Myeloid Leukemia" and it returned the original article

by David Fitz (Oct 19)

Is it really counterintuitive that a lower dose leads to a better response?

We are basically interested in a sort of homeostasis. If we have a bacterial infection, we take antibiotics.

by David Fitz (Oct 19)

If you put the DOI (digital object identifier) into http://www.sci-hub.tw you can usually get the full paper.
For example, the DOI for the latest DESTINY data is 10.1016/S2352-3026(17)

by LabNoir (Oct 19)

Hi Kirk
Thanks. I have actually come across this paper and showed it to my doc (who was not aware of it..), it is just counterintuitive that a lower dose would lead to better response. I do have to
Category: Uncategorised

Replies: 25

Last updated: 20 October 2018
chrissie on 19 October 2018

Category: Blood tests

Replies: 6

Last updated: 19 October 2018

Frequency of PCR testing
by chrissie (Oct 19)

Thanks, looking good for you
Best
Chrissie

by chrissie (Oct 19)

Thanks, another one at 6 weeks.
Best
Chrissie

by chrissie (Oct 19)

Thanks David. 6 weeks seems a sensible period in between or even 2 months. Not too happy leaving it at 3 months but, providing my hospital are prepared to pay for more frequent PCR testing, and my

by RC Kirk (Oct 19)

Hi Chrissie,
For what it's worth, most of my PCR tests have been at 3 month intervals.
Gleevec 400mg/day - 2014 000.174%, 000.088%, 000.064% 2015 000.049%
Gleevec 200mg
Category: Blood tests

Replies: 6

Last updated: 19 October 2018
r06ue1 on 9 May 2018

Category: Uncategorised

Replies: 7

Last updated: 17 October 2018

Generic drugs don't always push prices down
by Richard42 (Oct 17)

If it's private non commercial use, then in most countries importation into a patent protected area is not infringement. Regulatory issues may make personal importation more difficult, however...

by David Fitz (Oct 10)

I won't give the exact figure, but as I understand it the NHS has negotiated a supply of generic imatinib from a supplier that is at a very significant discount to the price quoted there. It's of

by Nimbus2 (Oct 9)

Presumably, buying a drug in an area where patent protection does not apply and shipping it to an area where patent protection does apply would infringe the area patent. Clearly, in any territory,

by Nimbus2 (Oct 9)

NICE in the UK indicates £1,946.67 for Novatis imatinib 400 mg, 30 tablets. Could be £23,684 a year without pharmacy cut.
The cheapest generics on the list are priced at £199.98 for the same.
Category: Uncategorised

Replies: 7

Last updated: 17 October 2018
FiremanRock on 17 October 2018

Category: Side effects

Replies: 1

Last updated: 17 October 2018

Sebopsoriasis
by sandy craine (Oct 17)

Hi Andy,
As if you needed yet another complication. If the supplements you were taking before your diagnosis were making a difference to your overall health then keep on with them. The old chestnut

by FiremanRock (Oct 17)

I presented to my GP on the 27th December 2017 and got confirmation on the 9th January this year. Imatinib, all good. However, I also have Vitiligo and unbeknownst to me the three way clash between
Category: Side effects

Replies: 1

Last updated: 17 October 2018
Naj on 12 October 2018

Category: Drug-food interactions

Replies: 6

Last updated: 17 October 2018

Tasigna and ibuprofen
by Naj (Oct 17)

Cmljax,
Thank you !!

by cmljax (Oct 14)

My oncologist told me the same thing as Sandy has told you - no ibuprofen, but ok to take acetaminophen/tylenol occasionally. Ditto also on the magnesium taurate.

by Naj (Oct 12)

Sandy,
Thank you !! I will do as you have suggested !!

by sandy craine (Oct 12)

Naj,
Best to take paracetamol rather than ibuprofen but only occasionally as TKis are also metabolised by the liver. To alleviate the muscle spasms/cramps you describe it may be a good idea to try a
Category: Drug-food interactions

Replies: 6

Last updated: 17 October 2018
Tbrand on 16 October 2018

Category: Blood tests

Replies: 1

Last updated: 16 October 2018

Best results
by RC Kirk (Oct 16)

Congratulations!

by Tbrand (Oct 16)

Diagnosed 1/2016, MMR 1/2017, .03 or so until last result from 07/2018 gotten today is .000 I feel great! Finally! On Imatinib.
Category: Blood tests

Replies: 1

Last updated: 16 October 2018