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David Fitz on 1 August 2020

Category: Uncategorised

Replies: 2

Last updated: 7 August 2020

PinnedSurvey: 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
David Fitz on 28 July 2020

Category: Uncategorised

Replies: 2

Last updated: 31 July 2020

PinnedHelp CML Support when you shop at Amazon
by David Fitz (Jul 31)

Thanks John! It all makes a difference.
I don't think Amazon Fresh (or Prime Now) counts - just the standard Amazon catalogue, but that's still a lot!
David.

by johnw1001 (Jul 31)

David,
As an avid user of Amazon I have subscribed to this scheme for some time;my latest total contribution to CML is nearly up to £30.The amount of support is quite small but if we

by David Fitz (Jul 28)

For some time, you've been able to support CML Support when shopping at Amazon Smile (https://smile.amazon.co.uk), but you couldn't do this on your mobile until now.
AmazonSmile customers
Category: Uncategorised

Replies: 2

Last updated: 31 July 2020
sandy craine on 26 July 2020

Category: Other conditions

Replies: 0

Last updated: 26 July 2020

PinnediCMLf Conversations on CML and COVID-19 - Recordings available to view
by sandy craine (Jul 26)

The iCMLf is hosting conversations on CML and COVID-19 with renowed experts in CML that address key questions on how to manage patients with CML during the COVID-19 pandemic. You can view recordings
Category: Other conditions

Replies: 0

Last updated: 26 July 2020
scuba on 10 August 2020

Category: Uncategorised

Replies: 1

Last updated: 11 August 2020

Leukemia immuno-therapy "cure" progress update
by Vivek Kumar (Aug 11)

It says "Fate Therapeutics will soon initiate a Phase 1 trial investigating its CAR T-cell therapy, FT819, across several B-cell cancers," Does CML comes under B cell cancers ?

by scuba (Aug 10)

https://immuno-oncologynews.com/2020/08/07/fda-clears-fates-ft819-car-t-...

Car-T cell therapy continues to advance with new trials beginning for Lymphoma/leukemia cancers. The promise of Car-T
Category: Uncategorised

Replies: 1

Last updated: 11 August 2020
EvaH on 19 April 2017

Category: Treating CML

Replies: 25

Last updated: 10 August 2020

Have you reduced your dosage due to deep response? Share your experience
by David Fitz (Aug 10)

You might find this interesting as well ...
Once a day nilotinib: A Real Life Observational Study | CML Support
David.

by Lucky (Aug 10)

Hi Scuba,
I looked at the references of the articles you sent me and found a good news for patients who are on nilotinib: “Switching from nilotinib twice daily to once daily at a reduced

by David Fitz (Aug 10)

No, I had been diagnosed for about 6 years before reducing dosage. I started reducing at MR4.
David.

by VioS (Aug 9)

I reduced my Tasigna doze from 600 mg to 300 mg, because of sidde effects, i was im MM3 for about 4 years, never reach MR4, untill now .
Before reducing BCR ABL was 0,03, then after 3 months on
Category: Treating CML

Replies: 25

Last updated: 10 August 2020
Philiptibbs on 24 March 2019

Category: Side effects

Replies: 13

Last updated: 10 August 2020

Oncologist says CML doesn't cause pain ????
by bendicco (Aug 10)

Hi Sandy, question for you , do you also take calcium so that the balance of calcium and magnesium is still appropriate?

by Philiptibbs (Aug 8)

When I was a teenager I smoked it but don't know what happens when you get older LOL because I don't like the High feeling anymore it makes me paranoid . Also I went to pain management and

by Philiptibbs (Aug 8)

Thanks So much for your input. I will try the liquid Magnesium . I take Magnesium Glycinate right now twice a day.

by sandy craine (Aug 8)

Supplement with Magnesium.... definitely! Also change your doctor if you can. Glad you stopped Gabapentin - one of a very dangerous class of drugs.
I take Magnesium in liquid form...'40000 Volts
Category: Side effects

Replies: 13

Last updated: 10 August 2020
bendicco on 10 August 2020

Category: Side effects

Replies: 0

Last updated: 10 August 2020

Can't live like this!
by bendicco (Aug 10)

Hi all. I have been on Gleevec since 2016, a short stint on Sprycel which cause terrible pain in my calves. For the past year I have had the electrical pain others have discussed from the
Category: Side effects

Replies: 0

Last updated: 10 August 2020
tylerg242 on 6 August 2020

Category: Uncategorised

Replies: 3

Last updated: 10 August 2020

Testosterone
by PhilipDavid (Aug 10)

Hi
I was diagnosed with very low testosterone some 15 months ago - I am on Gleevec 400 mg per day
I started TRT therapy some 3 months ago - 40 mg per day - I have had my first

by AlastairC (Aug 7)

I too had testicular cancer, and am on Nebido injections every 12 weeks for testosterone. Never had a problem with it, other than convincing the doctors that one liver function test every 6

by Stuart Johnston (Aug 7)

Hi I am on imatinib 400mg for cml, also had testicular cancer as well. I am know using testogel daily with no adverse effects. Plus other mens for other conditions

Hope it helps

by tylerg242 (Aug 6)

Has anyone had any issues taking a Testosterone booster while on Gleevec? Asking for a friend. 😉
Category: Uncategorised

Replies: 3

Last updated: 10 August 2020
VickyK. on 22 February 2019

Category: Side effects

Replies: 20

Last updated: 8 August 2020

Tasigna hair loss
by sandy craine (Aug 8)

You could try a product called 'Absolute Collagen' - available here in the UK.
Sandy

by Faith_05 (Aug 8)

Hi Lucky,
if I find a solution I will let you know !!
My doctor says it will stop, but I really do not know ... I'm worried!
I take 800mg a day, I will wait for the next PCR and if it

by Lucky (Aug 8)

Hi Faith,
I also had a serious hair loss which started 3 months after I started treatment with Tasigna 600mg (Oct 2020) and this hair loss continued for a period of 3-4 months. Almost one third

by Faith_05 (Aug 3)

hello Vicky,
Thank you for your answer,I wish you well.
I have had hair loss for a month and a half, but I have no other side effects. I went to a dermatologist and started a treatment. I see
Category: Side effects

Replies: 20

Last updated: 8 August 2020
jaideepdoc on 1 August 2020

Category: Treating CML

Replies: 5

Last updated: 8 August 2020

Jump in PCR ABL after 2 yrs
by alexmcpee (Aug 8)

Glad you got the report and also pleased for you that you have no mutations. Hoping I get mine back soon too.
Alex

by Nimbus2 (Aug 7)

The mutation analysis is performed on blood. This also applies to the next generation sequencing technique.

by Nimbus2 (Aug 7)

After waiting 5 months following my providing a second sample, I have a result from the CLASS Trial which simply reports, "No AKD mutations".

by alexmcpee (Aug 7)

Hey mate my mutation analysis was done on blood sample not bone marrow. Been waiting 4 months for the results so far. Slow slow slow. Did I say slow 🤣
Category: Treating CML

Replies: 5

Last updated: 8 August 2020
MartinZA on 29 July 2020

Category: Treating CML

Replies: 4

Last updated: 8 August 2020

Thoughts on Vitamin D
by Lucky (Aug 8)

Hi Tom,
May be you are right. May be TKI-s cause the levels of vitamin D to go down and we need to supplement with higher dosage. When I started treatment with Tasigna 600mg in Oct 2020 I

by tom888 (Aug 1)

I would also like to mention something about vitamin D. I have noticed that in cases of people not suffering from cml, vitamin D rises faster than all of us. In our case it goes up with difficulty

by MartinZA (Aug 1)

Hi scuba
Wow! Thank you so much for taking the time to write me this incredibly detailed response. So interesting, so practical and so very valuable. The timing regarding half-

by scuba (Jul 29)

Hi Martin,
Most cells in our bodies have the vitamin D receptors (VDR) on their membrane surfaces especially white blood cells. Vitamin D is essential in activating T-cells which fight cancer and
Category: Treating CML

Replies: 4

Last updated: 8 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
hierplane on 3 August 2020

Category: Treating CML

Replies: 1

Last updated: 4 August 2020

Veenat (Imatinib) - Where to Buy
by sandy craine (Aug 4)

Hi,
I am not sure of the situation regarding access to generic imatinib in Pakistan and I can't find much information, so I suggest you contact the following CML patient group who may be able to

by hierplane (Aug 3)

Hi
Can anyone advise where I might be able to buy GENUINE 400mg veenat in Pakistan or the UK please? My mother from Pakistan has CML but no Imatinib is available there.
Thank you!
Category: Treating CML

Replies: 1

Last updated: 4 August 2020
Chuckster on 25 April 2018

Category: Side effects

Replies: 6

Last updated: 3 August 2020

Anyone experience weight loss on Sprycel?
by Chuckster (Aug 3)

Hi.
In my case, it was definitely the HIGHER dosages of Sprycel causing many side effects including the loss of appetite etc.
Since my dosages were lowered from 100mg then 80mg

by deonlee (Aug 3)

Hi everyone!
Really glad I found this forum!
I also have been struggling with loss of appetite recently. Some time ago after about 3 months of Imatinib, my blood counts were dropping too much so I

by Liamsdad (May 7)

I'm glad I saw this post. Since switching to Sprycel - only 40mg, I have lost about 10 pounds as well, going from 145 to 135 lbs and I'm 5'10" (sorry British folk-don't know the conversions),

by Gitel (Apr 26)

Hi Chuck. On 100 mg Sprycel just this past 4 weeks after 3 months on Imatinib. Am resistant to Imatinib, thus the change. Pray Sprycel works. My original diagnosis was Dec 1,2017. No,
Category: Side effects

Replies: 6

Last updated: 3 August 2020