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chevyflame on 30 June 2018

Category: Treating CML

Replies: 17

Last updated: 30 July 2022

Pleural Effusion
by LL12 (Jul 30)

Thank you cousineg2, I have an appoint with pulmonary Tuesday 8-2, and planning to discuss options I've come across, this gives me some time to check the info you've sent.
I'm 2

by kat73 (Jul 29)

I remember that episode, too! Kind of Swiftian, as well.

by chevyflame (Jul 28)

Thank you for the message. Glad to hear that you are doing well at the 20mg dose. I hope that continues for many years.

There is a bill currently in front of the Senate which covers more

by kat73 (Jul 28)

I am so sorry to hear this, and offer my heartfelt condolences to you. Thank you for writing to us all and telling us. I remember ChevyFlame from "the old days" on the LLS site
Category: Treating CML

Replies: 17

Last updated: 30 July 2022
Richard on 23 July 2022

Category: Treating CML

Replies: 4

Last updated: 29 July 2022

Doctor suggests that I should stop Imatinib
by JoeP (Jul 29)

Congrats Richard after 16 years that’s quite a journey. I was on Imatinib for 11 years before it stopped working. I agree with David if you are undetectable and have few or tolerable side

by David Fitz (Jul 24)

Hi Richard,
To offer a different viewpoint, if your CML is well controlled and you don’t have major side effects from imatinib what is to be gained by coming off it?
The 75% figure is rather

by Richard (Jul 24)

Thanks for your advice, Buzz.
It has taken me 16 years to get to where I am now. Should CML rear its ugly head again, I fear that I might die with it, or of it, neither of which is a good option.

by Buzzm1 (Jul 24)

Richard, yes, you should try stopping Imatinib; you have absolutely nothing to lose. Should you relapse, lose MMR 0.1, during this attempt, convince your hematologist to restart you on a
Category: Treating CML

Replies: 4

Last updated: 29 July 2022
AlastairC on 28 February 2022

Category: Drug-drug interactions

Replies: 19

Last updated: 27 July 2022

Imatinib/Anticoagulants interaction when having surgery
by AlastairC (Jul 27)

Just a quick update 6 days post operation.
I stopped my 200mg imatinib 48 hours before the procedure. My last 3 BCRABLs have been undetectable.
All went well in surgery. I had a spinal anaesthetic

by Vikram (Jul 23)

Hello Alistair

by Vikram (Jul 21)

Hii Alister,
Your Last able bcr... undetactable? And continue?
Your imtanib dose?
400 / 200 ?
One more question
What your doctor recommended general anesthesia ya local anesthesia?
General

by AlastairC (Jul 20)

Just a quick update.
Surgery was scheduled for 4 August, and my haematologist had said to stop my imatinib a week before, and restart once my wound had healed.
HOWEVER, this morning the hospital
Category: Drug-drug interactions

Replies: 19

Last updated: 27 July 2022
Batman0424 on 25 July 2022

Category: Blood tests

Replies: 1

Last updated: 26 July 2022

Low Counts?
by alexmcpee (Jul 26)

MartinZA who posted a similar question on here is in a similar position with all of a sudden low counts although as far as I know his BCR is still ok - your wife is no doubt having a 2nd biopsy

by Batman0424 (Jul 25)

Hello,
My wife was diagnosed with CML in November 2019 and has been on dasatinib since. Her counts have always been low, but recently her dr's office has suggested that a bone marrow
Category: Blood tests

Replies: 1

Last updated: 26 July 2022
alexmcpee on 15 November 2018

Category: Side effects

Replies: 13

Last updated: 25 July 2022

Trapped nerve or TKI symptom
by David Fitz (Jul 25)

As my grandfather said, you need good shoes and a good bed. Because if you’re not in one, you’re in the other.

by saseder (Jul 25)

I’ve met some people with this syndrome, and all of them told me that a part of the solution was getting good pillows and sleeping in the correct position. We sleep for about one-third of our

by JoeP (Jul 21)

A good pillow is worth it’s weight in gold. I have had probs with my neck for over 20 years due to a degenerative disc in c4-c5. Of course made worse by TKIs. I learned early on a pillow is

by JoeP (Jul 19)

I do believe it’s possible. Some people on this forum are in TFR, treatment free response. So it’s possible. You have to sustain MR4.5 for something like 2 or 3 years straight
Category: Side effects

Replies: 13

Last updated: 25 July 2022
vineet on 15 July 2022

Category: Blood tests

Replies: 3

Last updated: 25 July 2022

observed immature granulocytes cell(0.2%) in blood report achived mmr 9 months ago
by Tater1 (Jul 25)

Hi. I have had higher immature granulocyte counts periodically and when asked my Dr responded that they see these numbers come up in many patients from time to time. He emphasized that

by MartinZA (Jul 25)

Hi there
I'm not a doctor so don't want to say too much about the immature granulocytes except that I thought these were associated with inflammation, not leukaemia (I thought they are

by An (Jul 17)

Isn't immature granulocytes and basophils within range?if hb is low rdw will be low.

by vineet (Jul 15)

hi all , i am cml patient in sept 2019,my recent bcr abl test was on may-22 last week and i was in mmr (0.04 IS scale).i am on dasatanib. my wife asked me to do full body
Category: Blood tests

Replies: 3

Last updated: 25 July 2022
cousineg2 on 23 July 2022

Category: About CML

Replies: 1

Last updated: 25 July 2022

Convert your PCR result from % to log or vice versa from log to %.
by Sunny (Jul 25)

Thank you guys, these two replies are so very helpful. I was always a bit vague about it, now finally have an explanation and handy reference. Brilliant.
pigeon.

by David Fitz (Jul 23)

Log results are pretty easy to calculate in your head.

100% = no log drop
10% = 1
1% = 2
0.1% = 3 (hence MR3, or MMR)
0.01 = 4 (MR4)
0.001 = 5 (MR5)

Like the metric system, it’s all very
Category: About CML

Replies: 1

Last updated: 25 July 2022
sandy craine on 23 July 2022

Category: Treating CML

Replies: 0

Last updated: 30 August 2022

iCMLf Conversations- 1) Treatment after failure of 2 TKIs ; 2) Meet the CML Experts
by sandy craine (Jul 23)

1) Current practices for third-line management of CML and get first-hand expert knowledge from:
Professor Andreas Hochhaus
Head of the Department of Hematology and Medical Oncology,
Jena
Category: Treating CML

Replies: 0

Last updated: 30 August 2022
snowman 35 on 3 May 2020

Category: Drug-food interactions

Replies: 11

Last updated: 21 July 2022

Vitamin E with Sprycel
by capitulinagarage (Jul 21)

I wouldn't advise you to do that. I think it can cause your body to overflow with all sorts of toxins, which will negatively affect your health. You can get intoxicated from mixing these

by snowman 35 (May 10)

I take Sprycel 7:30 in the morning and i take vitamin E after my lunch at about 14:00...I think it 's OK...

Thank you both for your time! Your answers were very help ful!!

by scuba (May 9)

I would not know if they have the same antioxidant effect, but if you have a diet rich in antioxidants overall (more than one kind) you will be fine:
https://www.uspharmacist.com/article/natural-

by snowman 35 (May 9)

So Scuba e. g. If I take big amounds of natural turmeric or curcumin as a supplement has the same antioxidant effect with vitamin E? I can not eat lots of vegetables or nuts because I have ibs...
Category: Drug-food interactions

Replies: 11

Last updated: 21 July 2022
hannibellemo on 14 April 2021

Category: Side effects

Replies: 5

Last updated: 20 July 2022

Triamcinolone acetonide infusion for dasatinib induced chronic pleural effusion
by LL12 (Jul 20)

That's fantastic news, and yes don't look back.
Thank you for the info, just by chance I came upon your response, I'm still learning this website, and a ton of reading I've

by hannibellemo (Jul 18)

Hi, LL12, thank you. I've never looked back since my infusion with steroids. The tube was removed on May 13 a year ago and I've been in complete molecular remission on Tasigna, 150mg. twice

by LL12 (Jul 18)

I'm new to this website, still learning to navigate it. Your story on Plueral Effusion is almost identical to mine. I've had this catheter in my right side for 8 months now, the draining has

by hannibellemo (Apr 17)

Good one, kat! So far my drainage is around 30g (I weigh, it's more accurate than trying to read between the lines of the vacuum bottles) since Wednesday. My usual every other day drainage
Category: Side effects

Replies: 5

Last updated: 20 July 2022
Polineczka on 2 July 2022

Category: Getting help

Replies: 4

Last updated: 30 October 2022

Beauty
by Bashmett (Jul 20)

The profession of a cosmetologist in modern society is very necessary for people because a beautiful person is characterized by the absence of complexes. Nowadays, many people treat dry skin,

by ursalacim (Jul 14)

I know a lot of moments that make different beauty treatments, starting from usual care procedures and ending with face lifting and face massages. If you are considering visiting this kind of

by MartinZA (Jul 8)

Hi there
When first diagnosed with CML, it was a stressful time as we all know - I therefore decided to book myself in at a spa for a week. Interestingly, the spa attendant became a little

by CaraM (Jul 5)

Hi,
I’ve had facials, massages, etc etc. i disclose my CML, advising that it’s controlled, and have never had any issue.
Good luck.
Category: Getting help

Replies: 4

Last updated: 30 October 2022
SS86 on 14 February 2021

Category: Drug-drug interactions

Replies: 5

Last updated: 18 July 2022

Food items to include & exclude
by Bashmett (Jul 18)

If you have skin problems, then you should avoid all aggressive foods. Including it is worth removing sharp spices and additives from the diet that irritate the intestines. All purulent

by sandy craine (Jun 29)

Hi,
Regarding grapefruit etc ... it is not because of any vit C content, but rather because of the following:
Many drugs are broken down (metabolized) with the help of a vital enzyme called

by Felix (Feb 18)

Hi, yes fine no problems with blackberries .

by mil (Feb 18)

Hi Felix, do you know if blackberries are ok to eat?
Category: Drug-drug interactions

Replies: 5

Last updated: 18 July 2022
jhorne1 on 1 December 2019

Category: About CML

Replies: 28

Last updated: 18 July 2022

Recently diagnosed. Many questions.
by YourExpress (Jul 18)

Medical weed can be an answer here. It will not cure you, but it will help relieve the symptoms and make your life generally easier. Many people can continue living their normal lives thanks to

by jhorne1 (Feb 27)

Thanks Scuba! My ONC mentioned this is a EMR. Is there data that shows long term response IRT EMR?

by scuba (Feb 27)

Cool. You're almost in the zone (not the danger zone).

by jhorne1 (Feb 26)

Hi all, excited to let everyone know after 83 days on sprycel that my PCR went from 352% to .9%!!!!!
Category: About CML

Replies: 28

Last updated: 18 July 2022
Dustylloyd on 16 July 2022

Category: Uncategorised

Replies: 1

Last updated: 18 July 2022

Covid
by AlastairC (Jul 18)

In my experience no - I had it over Christmas and can detect no longer term effects.

by Dustylloyd (Jul 16)

For the last 5 days I’ve been resting because of catching covid, my early symptoms were tiredness, muscle aches especially at every limb joint, but at the moment I’m feeling fine the
Category: Uncategorised

Replies: 1

Last updated: 18 July 2022
GrahamJ on 4 October 2021

Category: Uncategorised

Replies: 2

Last updated: 5 October 2022

University of Glasgow New cancer ‘inhibitor’ could lead to improved treatment options
by IanMcfarland (Jul 16)

Despite the unprecedented impact of immune checkpoint inhibitors on the treatment of malignancies, a lack of response to these molecules has been observed in several cases. Another approach, the use

by ChelseaMueller (Jul 15)

Thank you for sharing the good news. There has been very little good news lately.

by GrahamJ (Oct 4)

Here is a press release from the University of Glasgow which may be good news for many:

News Release
September 29 2021 Embargoed until 7pm UK time Wednesday 29 September 2021
New cancer
Category: Uncategorised

Replies: 2

Last updated: 5 October 2022
ishb1 on 28 April 2021

Category: Blood tests

Replies: 2

Last updated: 16 July 2022

How do you read your BCR test/transcript?
by Reilly9108 (Jul 16)

My number is .17
p190 .17
p210 negative
is negative and undetected mean the same thing

by RC Kirk (May 1)

Sounds like normal CML. Here's what my report said at diagnosis: "p210 transcript b3a2 and b2a2 118.683% IS (88.57%), p190 transcript e1a2 0.01%"
My report didn't separate the b3a2

by ishb1 (Apr 28)

Doctor ordered a BCR ALB1 Tests and it has examples of
B2A2 Transcript
B3A2 Transcript
Do you all know how to Interpret the results? for instance, it gives me a percentage by each transcript.
Category: Blood tests

Replies: 2

Last updated: 16 July 2022
karan on 25 April 2018

Category: Treating CML

Replies: 7

Last updated: 16 July 2022

Understanding results of BCR-ABL Quant
by Reilly9108 (Jul 16)

Hello
tring to understand my results….
For 1 1/2 years results negative. Recent Results e14a2. .1714
does anyone know what this means

by David Fitz (Apr 27)

Karan,
To learn more about PCR tests and how they're done, results calculated and what they mean you should start with our very own PCR primer for patients.
You can find it at this page

by karan (Apr 27)

Thank you all for inputs and sharing the information.
Your responses gave us ( me & my family) a huge relief and assurance that things are under control.
@cmljax & @AlastairC
1. We

by scuba (Apr 25)

Hi Karen,
.... from cmljax, "Scuba will tell you that your mother will never die from CML and that is most likely correct."
Your mother will NEVER die from CML and that is correct.
Her so-called new
Category: Treating CML

Replies: 7

Last updated: 16 July 2022
Richard on 15 July 2022

Category: Reproductive health

Replies: 0

Last updated: 15 July 2022

Drug similarity with imatinib
by Richard (Jul 15)

I have been taking imatinib for 18 years, and I have become used to its brown skin, and its lozenge shape. I have now been given new shape and a new colour. Although it is not particularly a problem
Category: Reproductive health

Replies: 0

Last updated: 15 July 2022
cousineg2 on 14 July 2022

Category: About CML

Replies: -1

Last updated: 14 July 2022

Working towards a cure in CML

Category: About CML

Replies: -1

Last updated: 14 July 2022
Rocky Mountain Gal on 8 July 2022

Category: Side effects

Replies: 6

Last updated: 14 July 2022

New member of the club I didn't ask to join
by JoeP (Jul 14)

Rocky Mountain Gal sorry to hear about your wild ride. Your symptoms sound severe. Basically early on a TKI should reduce your BCR-ABL to a much safer level quick within a few months but surely on a

by Rocky Mountain Gal (Jul 13)

On July 3 and 4th we spent time with a couple (including a 3 hour car ride up and back into the mountains) with a couple. They let us know that they had covid symptons on the 5th, (

by scuba (Jul 13)

What are your individual blood counts?
Neutrophils
RBC
Platelets, etc.

by Rocky Mountain Gal (Jul 12)

Any advice or words of encouragement would be greatly appreciated.
Bone marrow results 64% at diagnosis but not in blast, spleen measured 22 cm. 1st E.R visit was b/c they thought my spleen
Category: Side effects

Replies: 6

Last updated: 14 July 2022