CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

Mbwynne on 21 August 2020

Category: Treating CML

Replies: 2

Last updated: 22 August 2020

Swollen Eye lids
by Mbwynne (Aug 22)

Thank you John very much.

by johnw1001 (Aug 21)

Hi
This is quite a common condition and side effect of tki s and is referred to as eyelid edema or peri -orbital odema when it surrounds the tissues of both eyes and especially eyelids.There is a

by Mbwynne (Aug 21)

hello, has anyone come up with any way to reduce swelling of the eye lids and face - it is a reaction to 100 Disatnib.

Many thanks Mary
Category: Treating CML

Replies: 2

Last updated: 22 August 2020
Jacqueline Allmark on 15 March 2020

Category: Getting help

Replies: 9

Last updated: 21 August 2020

Mouth ulcers
by Sd (Aug 21)

I am happy to say that my mouth ulcers resolved in June after 5 weeks of no imatinib. When I restarted the med they did not return. I do suggest for those with the mouth ulcers that if you must

by Busaboy (Aug 13)

I've experienced many ulcers in recent years, especially in my throat which I never had before. It led me to several nasopharyngealscopies, as they persisted on multiple occasions. I found

by alexmcpee (Aug 13)

I regularly get Geographic tongue on Tasigna but not ulcers. It seems TKIs fix a lot but also mess up a lot too. Rock and hard place comes to mind.
Hope you get some relief.

by Sd (Mar 20)

I have had mouth issues since the end of January. Like a rough feeling on the sides of my mouth, and sore tongue. After 2 treatments for thrush, I was off imatinib for 2 weeks. My mouth improved by
Category: Getting help

Replies: 9

Last updated: 21 August 2020
saifur360 on 19 August 2020

Category: Side effects

Replies: 2

Last updated: 20 August 2020

Both eyes (white part) looks grey & folded
by sandy craine (Aug 20)

It may be that you are suffering from a condition called Blepharitis? Alex has already asked this but can you clarify what you mean by whites of eyes looking grey? the best and cheapest option

by alexmcpee (Aug 19)

Hi I am not sure what you mean by “grey” a lot of us on TKI have much reder whites of the eye. And I am not sure what you mean by folded. Sounds like you’re possibly having

by saifur360 (Aug 19)

I am on Imatinib (veenat 400 mg) since January 2017. Last September my RQ-PCR was 0.015, for covid 19 I cannot continue my follow-up but I am taking imatinib regular. But now I face a side effect on
Category: Side effects

Replies: 2

Last updated: 20 August 2020
onekayaker on 16 August 2020

Category: Uncategorised

Replies: 2

Last updated: 20 August 2020

Question about MD ANDERSON places to stay
by onekayaker (Aug 20)

Thank you!! I will get to visit her next week hopefully since I will be there for blood work.

Steff

by dftitus (Aug 18)

Here’s a link to a PDF listing places to stay near MD Anderson. I hope you find it useful. https://www.mdanderson.org/content/dam/mdanderson/documents/patients-and-family/becoming-our-

by onekayaker (Aug 16)

I know some folks here are being treated at MD Anderson that had to travel and stay nearby. If anyone can pls post information on decent furnished apts it would be appreciated.
Category: Uncategorised

Replies: 2

Last updated: 20 August 2020
Zaccar on 13 August 2020

Category: Treating CML

Replies: 11

Last updated: 15 August 2020

Newbie reasonnable doctor expectation?Glevec or Tasigna as first line treatment?
by Zaccar (Aug 15)

Yes allastair I'll avoid missing doses thanks for the advice! Will you go lower than 200mg?
Just by talking to you guys and thinking about my treatment goals dose reduction

by AlastairC (Aug 15)

Hi. I'm not sure about another TFR attempt. My first aim to get back to log 4 reduction - BCR-ABL below 0.01%. If I can get there and sustain that for a few months I would want to go back to

by alexmcpee (Aug 14)

I can echo all those feelings buddy and those thoughts sometimes creep back in. You’ll have months when it’s relatively easy and others where you are consumed by it. At least that’

by Zaccar (Aug 14)

Thanks for that reality check. Quite frankly the fact that we can expect to live normal lifespan is a miracle on it's own. Happy to know that there's a light at the end of the tunnel.
You
Category: Treating CML

Replies: 11

Last updated: 15 August 2020
Ontasigna on 11 August 2020

Category: Treating CML

Replies: 1

Last updated: 12 August 2020

Aspirin and Tasigna
by Mixail (Aug 12)

I take asprin every day with 400mg of Imanatib for 2 years no problem so far. But check with your oncologist. Mine said it was ok for me.

by Ontasigna (Aug 11)

Hi All,
I have been advised to take Aspirin by Physician for severe back pain.
I did check the drug interaction. It show No interaction.
Shall i go ahead? Has anyone taken it.
Kindly share your
Category: Treating CML

Replies: 1

Last updated: 12 August 2020
gajendraverma on 11 August 2020

Category: Drug-food interactions

Replies: 4

Last updated: 12 August 2020

Imatinib & Citrus Fruits interaction
by gajendraverma (Aug 12)

Hi,

It is actually sweet lemon juice which is also called Citrus limetta.

by David Fitz (Aug 12)

So I would normally say lime juice isn’t an issue because it’s interaction with medication is moderate compared to grapefruit juice (link below states about 1/4 as “potent

by gajendraverma (Aug 11)

Thank you for reply.

It is one glass (approx 250 ml) on every alternate day.

by David Fitz (Aug 11)

What are we talking here? A wedge of lime in a gin & tonic, or 200ml of lime juice (which I can’t imagine anyone can stomach!)
Category: Drug-food interactions

Replies: 4

Last updated: 12 August 2020
givethanks on 2 May 2020

Category: Uncategorised

Replies: 16

Last updated: 12 August 2020

80 year old mother on sprycel
by givethanks (Aug 12)

My mother developed pluerual effusion from spyrcel at 70mg and had to have it drained twice and was having a lot of gastro issues too. the Dr stopped sprycel and plueral effusion

by scuba (Aug 12)

Because your mother is undetected there is absolutely NO REASON for her to be on 100 mg.

https://pubmed.ncbi.nlm.nih.gov/31553487/

Any doctor who continues to prescribe 100mg dasatinib for elderly

by Nimbus2 (Aug 12)

I wonder, is there a reason for the carbonated drink to be cola? Cola has always made me feel sick. Would another acidic carbonated drink work in the same way or does it have to be cola.

by givethanks (Jun 12)

Chuck, Thank you so much for your response. My mom was at 140mg for 3 months and the last two months has been 100mg. She also takes a proton pump inhibitor for her gastric felux
Category: Uncategorised

Replies: 16

Last updated: 12 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
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
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