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David Fitz on 1 August 2020

Category: Uncategorised

Replies: 2

Last updated: 7 August 2020

Survey: Help us research CML and COVID in distanced consults
by alexmcpee (Aug 7)

Done mate

by Sunny (Aug 5)

Thank you David, I have completed the Survey..

by David Fitz (Aug 1)

You may remember a few months ago we asked members of this group to complete a questionnaire about App usage to manage CML.
The same group of researchers are interested to understand patient’s
Category: Uncategorised

Replies: 2

Last updated: 7 August 2020
cmljax on 18 June 2020

Category: Uncategorised

Replies: 12

Last updated: 7 August 2020

Taking the TFR Plunge
by scuba (Aug 7)

CMLJAX wrote, "so I went from undetected to .004, which could be multiple logs ..."
Undetected is just that - no bcr-abl detected. 0.004 is not meaningful - and going from undetected to 0.

by cmljax (Aug 7)

Thanks Alistair - I had the same thought, but I decided to chicken out. My lab did not change its sensitivity - still at .0032, so I went from undetected to .004, which could be multiple logs

by AlastairC (Aug 7)

I would suggest it might be worth giving TFR another month and see how it is then. 0.004% is a very low level. I'd also check that your lab haven't got some new more sensitive equipment

by cmljax (Aug 7)

Unfortunately my PCR yesterday jumped from negative to .004% in just 7 weeks off the TKI. This is the first time since March of 2017 that I have been worse than at least MR 4.5. While this is
Category: Uncategorised

Replies: 12

Last updated: 7 August 2020
Whitey on 4 August 2020

Category: Treating CML

Replies: 7

Last updated: 7 August 2020

100 mg sprycel
by POPPY (Aug 7)

My boyfriend was on 100mg earlier this year & his platelet counts crashed & his BCR-ABL went up to 0.15 (prev was 0.05 when he was on Nilotinib).
His doc reduced it to 70mg and his

by Whitey (Aug 6)

My doctor is worried that I may develop a resistance to sprycel if I lower dose. I suppose its possible, but seems unlikely. I am going to push for dose reduction to 50mg. Hope to be at 20mg

by scuba (Aug 5)

100 mg is very high for most people. New protocols are suggesting 50 - 70mg starting dose. And this was known before 2018.

https://pubmed.ncbi.nlm.nih.gov/29723397/

Dosage is set during clinical

by Whitey (Aug 5)

Thanks, I agree. The 100mg is just draining me of all energy, hoping 50mg will change that.
Category: Treating CML

Replies: 7

Last updated: 7 August 2020
bendicco on 5 June 2020

Category: Side effects

Replies: 5

Last updated: 6 August 2020

Left Side Flank Pain
by bendicco (Aug 6)

Just to follow up, I have had X-rays of left rib area and abdominal and pelvic CT scans. All were normal. The pain varies in intensity but does last throughout the day, every day, and getting into

by bendicco (Jun 10)

Thank you for your reply. My oncologist says the pain is not from TKI’s but then again he has not experienced it. You have further convinced me that it is as you have been on both drugs. I

by vholly (Jun 9)

Hi,
I'm on Sprycel & have experienced side & rib pain but I'm not sure if it's the same type of pain that you are experiencing. For me, it's episodic, not constant; I

by bendicco (Jun 9)

Hi Sandy, I had one end of Feb. and it was 0.002. Just had another blood draw and sent back the test kit yesterday. Went to my primary doc yesterday, had X-rays of my ribs which seem to be ok
Category: Side effects

Replies: 5

Last updated: 6 August 2020
Alaina on 3 August 2020

Category: Uncategorised

Replies: 11

Last updated: 5 August 2020

Bosutinib 300mg
by Harriet12 (Aug 5)

Hello - can't remember exactly. I think I reduced once after about a year - then went back up again and then reduced and stayed on 200mg another two years after that (I think!).

by Diane CW (Aug 5)

Hi Harriet
Can I ask how long it was until you reduced your dose from 300mg to 200mg?
Diane

by Harriet12 (Aug 5)

It wasn't available when I was first diagnosed. I have been on Imatinib, Dasatinib, Nilotinib, Ponatinib and now Bosutinib.

I wasn't too high when I was diagnosed but it was difficult to get

by Alaina (Aug 5)

The UK fascinates me. Good for you. Were you prescribed Bosutinib since your initial diagnosis? If so, how high was your PCR when you got diagnosed?
Category: Uncategorised

Replies: 11

Last updated: 5 August 2020
johnw1001 on 2 August 2020

Category: Blood tests

Replies: 4

Last updated: 5 August 2020

BCR/ABL ratios % and IS factors
by AlastairC (Aug 5)

Hi John, glad the input was useful. Certainly process times have gone down over the years; I was involved around 15 years ago in the first implementation of a same day forensic DNA profiling system

by johnw1001 (Aug 5)

Hi Alistair,
Thank you for your expert input .One of the benefits of new equipment it seems is a faster turnaround time for the results to emerge .When long ago I was dx I was advised that it took 2

by Sunny (Aug 5)

Thank you Alastair for this explanation.

by AlastairC (Aug 2)

Hi John, having managed a UKAS accredited microbiology lab, I hope I can help. As part of the UK Accreditation Service audit (against the standard ISO 17025), equipment has to be shown to be
Category: Blood tests

Replies: 4

Last updated: 5 August 2020
terris on 25 July 2020

Category: Getting help

Replies: 6

Last updated: 5 August 2020

I am Hong Kong CML holder with BNO. I have enquiry about the UK NHS System
by terris (Aug 5)

Dear all,
Thank you you guy explain me so much abou the NHS and IHS.
I think even give IHS for the 5+1 period and can used NHS serivce already nice enough for me and the other chronic illness

by David Fitz (Jul 27)

Felix,
It isn't really about "paying in instalments" or not, it's about eligibility. Children of this country don't pay anything to the government, but of course we don't

by Richard42 (Jul 27)

Glad it was helpful. It may be useful to remember that the NHS is funded on a collective not individual basis. Contributions to tax and national insurance never match an individual’s usage of

by terris (Jul 27)

Dear Richard,
Thank you for your reply. You message is useful.
If really as you said, Iis is very reasonable or even privilege for patient BNO holders.
For HK CML patient or other cancer patient,
Category: Getting help

Replies: 6

Last updated: 5 August 2020
Batman0424 on 29 July 2020

Category: Blood tests

Replies: 6

Last updated: 5 August 2020

Immature Granulocytes 0.0 -> 1.3 %
by Tater1 (Aug 5)

Thank you! That is what I was able to find out from my Dr as well. I really appreciate the info.

by Nimbus2 (Jul 31)

I found this:
Immature Granulocytes (%)
A healthy result should fall into the range 0 - 0.5 %.
Immature granulocytes are white blood cells that are immature. Small amounts of white blood cells

by Nimbus2 (Jul 31)

I had a look back and observed that my IG was 18.34 when my white blood count was 74.49 shortly after diagnosis. The IG has later been zero or a small number less than 1.
My consultant tells me that

by Tater1 (Jul 31)

Thanks Alex! You’re right... we will get there! Faith in the process and enjoying life is so important, especially now. I have a great Dr. and I know he will call the
Category: Blood tests

Replies: 6

Last updated: 5 August 2020
vonnie on 30 July 2020

Category: Uncategorised

Replies: 4

Last updated: 31 July 2020

painful lower leg
by johnw1001 (Jul 31)

Hi,
There are some musculo skeletal effects from the long term use of tki s and especially imatinib.After over 14 years on imatinib I have peripheral neuropathy and am sure that it is due long term

by vonnie (Jul 31)

Thanks very much for all your replies so kind

Vonnie

by alexmcpee (Jul 31)

I have had a pain in the right ball of my foot fro about 3 weeks. It’s defo not something I have experienced before and it has become painful to walk on it. I have no doubt it’s TKI

by Buzzm1 (Jul 31)

vonnie, depending on your CML history begin reducing your Imatinib dosage if at all possible. I was on Gleevec 400mg for almost five years and had similar "hot" leg problems and
Category: Uncategorised

Replies: 4

Last updated: 31 July 2020
Rick B on 22 July 2020

Category: Side effects

Replies: 8

Last updated: 31 July 2020

Combatting Fatigue
by Rick B (Jul 31)

Ray,
I wish you well. I do get up and, after coffee, take a 3 to 4 mile walk. It does help a lot.
Again, I wish you well.
Peace.

by Rick B (Jul 31)

Thanks for this very helpful reply.
Best,

by Ray Sell (Jul 30)

Rick, I'm also 71, cml now for 4 years. Was on 600mg Imatinib and was horrible, terrible side affects, much energy loss. Now 400mg Imatinib and still energy loss, side affects much

by kat73 (Jul 30)

I would bet money that a switch to dasatinib would not make you lose your undetectable status, so a re-setting of the clock would not be an issue. I agree with Denise that "everything
Category: Side effects

Replies: 8

Last updated: 31 July 2020
Emer Vennard on 25 July 2020

Category: Reproductive health

Replies: 8

Last updated: 30 July 2020

Radiation link
by Emer Vennard (Jul 30)

Very true!

by kat73 (Jul 30)

In answer to your query, yes, I had breast cancer treated with radiation (2003), various scans between the years, then a CML dx in 2009. In addition, after that, I had two recurrences of the

by Emer Vennard (Jul 29)

Hi Dawn, thanks for replying! I've had no follow up scans or bloods since I finished chemo in Feb 2019, and I know this is the norm in Ireland from speaking with other women. This was picked up

by DawnD (Jul 29)

Hi, Haven’t posted in awhile but when I read your post could identify. I had breast cancer 2005 , numerous treatments including radiation. Then all kinds of follow up scans through the years.
Category: Reproductive health

Replies: 8

Last updated: 30 July 2020
Nimbus2 on 15 May 2020

Category: Uncategorised

Replies: 6

Last updated: 27 July 2020

Following on from a transfer from imatinib to dasatinib
by argearge (Jul 27)

Hi Nimbus.
Any new results yet ?

by Mr_T1987 (Jul 14)

Looks like you've followed a similar path to myself. Imatinib had a major effect initially but once I went Neutropenic, the doctor saw fit to change me to Dasatinib. Took me down from 3% to 0.18%

by ColoradoGuy (Jul 13)

I reached CCyR on Dasatinib at 6 months but did not break the MMR barrier with Dasatinib. Switch to Nilotinib at around 24 months and slowly crept to just under MMR at 33 months. I hope

by argearge (Jul 13)

That is great news. Maybe I also have to move to Dasatinib. Stuck at 0,29% after 24 months with imatinib 600 ... What is your dose and do you experience any side effects ?
Category: Uncategorised

Replies: 6

Last updated: 27 July 2020
An on 25 July 2020

Category: Uncategorised

Replies: 7

Last updated: 26 July 2020

Bcr abl going up
by alexmcpee (Jul 26)

Haha thank you no not always positive but looking at the evidence it’s the only way to be. As in your husbands case, a “little” uptick is no cause for concern as I said rejoice at

by An (Jul 26)

Hi Alex,I have read your earlier posts.you are always so positive.hope you reach mmr soon.sending positive thoughts your way.

by alexmcpee (Jul 25)

Gosh. I’d be chuffed with those numbers 28 months for me and no MMR yet. Numbers do bob around. If you had the same test taken in one day 2 or 3 times or blood taken from the other arm they

by An (Jul 25)

The results are the hardest part.I looked at the numbers yesterday and was totally depressed.Checking out this forum made me feel a lil better.I have to give special thanks to scuba ,checked vit d
Category: Uncategorised

Replies: 7

Last updated: 26 July 2020
Trevorp93 on 2 June 2020

Category: Blood tests

Replies: 5

Last updated: 25 July 2020

Need advice on Sprycel dosage
by terris (Jul 25)

Let me share my expereince,
I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.
During the next fix years, I taken 100mg as dosage and keep log4 result steadily.
Since

by terris (Jul 25)

Let me share my expereince,
I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.
During the next fix years, I taken 100mg as dosage and keep log4 result steadily.
Since

by Karthikeyan (Jun 2)

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your

by Karthikeyan (Jun 2)

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your
Category: Blood tests

Replies: 5

Last updated: 25 July 2020
Vikram on 23 July 2020

Category: Uncategorised

Replies: 3

Last updated: 24 July 2020

Benifite of tfr???
by alexmcpee (Jul 24)

All I’d say is with your results so far live your life as best you can as I’ve seen in previous posts you’re undetectable for many years (you’re extremely blessed). You

by Vikram (Jul 23)

Please reply....
Any information
Any suggestion........

by Vikram (Jul 23)

Only information purpose....
In 2018 news
Miristen 126
This is could be a major breakthrough for people who are in remission for CML because there is always a concern that the disease will come back

by Vikram (Jul 23)

What benifite of tfr???
1, I know tki side effects......
2, cost... Tki.....
Only two reason.....
And
risk resistance tki.... ( if resistant... Tki cost high ( imtinib free)
How many patients
Category: Uncategorised

Replies: 3

Last updated: 24 July 2020
Sally Martin on 21 July 2020

Category: Uncategorised

Replies: 8

Last updated: 23 July 2020

Intolerant /resistant of Imatinib. Switching to nilotinib and told no need to fast.
by David Fitz (Jul 23)

Hi Sally,
Homerton is my local hospital and is a great hospital for many things - they helped bring my daughters into the world under very difficult circumstances, so I have a soft spot in my heart

by Sally Martin (Jul 23)

Thanks Sandy. I spoke to the consultant haematologist who confirmed that I should fast to ensure the optimal effect from the drug but said it’s not dangerous to take it with food and would

by sandy craine (Jul 22)

Hi Sally,
This is such a basic mistake by the haematologist I can hardly imagine how they came to that conclusion! I can understand why you have lost confidence in your treatment. You do not say

by Sally Martin (Jul 21)

Thank you! I will do. I have just emailed the hospital and asked to speak to the head consultant, so hopefully I can deal with them going forward.
Category: Uncategorised

Replies: 8

Last updated: 23 July 2020
johnw1001 on 22 July 2020

Category: Drug-food interactions

Replies: 2

Last updated: 22 July 2020

NCCN Guidelines for CML
by scuba (Jul 22)

The NCCN guidelines are an excellent resource for newly diagnosed patients. It's recommendations are solid for those who rely only on their physician and the pharmaceutical company providing the

by alexmcpee (Jul 22)

Not surprised to be honest about the supplements and why for my own personal reasons don’t supplement at all. I supplement only through food veg and fruit, meat. My consultant says all those

by johnw1001 (Jul 22)

Hi All,
Whilst trawling through Amazon books I found that the NCCN -National Cancer Comprehensive Network earlier in 2020 had produced a paperback of Guidlines for Patients .However the same
Category: Drug-food interactions

Replies: 2

Last updated: 22 July 2020
Sherley on 19 July 2020

Category: Children & young people

Replies: 5

Last updated: 21 July 2020

Low hemoglobin and still No MMR
by alexmcpee (Jul 21)

Haha yes I have been asking myself too why it takes so long. But we are all different and our bodies process at different rates. Our disease load is also different from person to person. But so far

by Sherley (Jul 21)

Hi Alex,
yes it’s a lot of pressure wondering why it is taking so long. I really wish to be off this medicine! We are almost the same. Interesting to meet other

by alexmcpee (Jul 20)

Hi Sherley, I have been on meds for approx the same amount of time as you 2 years and 2 months and I too am hovering around 0.1 so not technically MMR but very close. Lots of pressure to reach MMR

by Sherley (Jul 19)

Thank you for getting back. Congratulations on your milestones!!! I asked the director that few months back to lower the dose bc he f the research I’ve done. My bcr has
Category: Children & young people

Replies: 5

Last updated: 21 July 2020
Justine on 16 July 2020

Category: Blood tests

Replies: 5

Last updated: 21 July 2020

BCR ABL numbers going up
by Praa (Jul 21)

Hi,
You go for double dose, insted of 400 mg, take onther 200 mg per day, per day 600 mg, it will work good.
Thanks 😊😊

by Justine (Jul 17)

Thanks for this advice and reassurance. I was not able to make my March quarterly appointment because everything was locked down and I was stuck at a friend's in a different city for March-April

by Justine (Jul 17)

Thanks Alex. I have been on 400mg imatinib since diagnosis. My doctor did request a mutation test which came back negative. I am working on getting in to see a leukemia specialist at Stanford

by ColoradoGuy (Jul 17)

From looking at these results I don't think there is much difference in the last three results. 0.1219 of course makes it seem worse because it is just outside MMR but I think the outlier
Category: Blood tests

Replies: 5

Last updated: 21 July 2020
bendicco on 19 July 2020

Category: Treating CML

Replies: 0

Last updated: 19 July 2020

CBD
by bendicco (Jul 19)

Hi all. I have read that many of you CML folks have been using CBD for the pain (that our oncologists say is not from the CML or the meds!) I was diagnosed almost 4 years ago with CML and am
Category: Treating CML

Replies: 0

Last updated: 19 July 2020