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Steve Q on 25 July 2019

Category: Other conditions

Replies: 1

Last updated: 28 July 2019

CML - Gleevec - Renal Failure?
by johnw1001 (Jul 28)

Hi Steve,
From what I have read about the impact of Gleevec/imatinib on the key organs of the body it seems that the drug is eventually largely expelled through the faeces (often with a brown

by Steve Q (Jul 25)

Does anyone have any information on gleevec and any relation to renal failure?
I know it can affect creatinine ratio, which can be a false indicator of renal failure. However, if there is blood
Category: Other conditions

Replies: 1

Last updated: 28 July 2019
Chuckster on 25 July 2019

Category: Blood tests

Replies: 0

Last updated: 25 July 2019

New blood Test Results: What does this mean?
by Chuckster (Jul 25)

Switched labs from Quest Diag. to Lab Corp:
Last 3 results from Quest were all 0.000 not detected both on FISH and BCR/ABL1 etc.
Now these new results from Lab Corp:
b2 a2 IS %: 1.146
b3
Category: Blood tests

Replies: 0

Last updated: 25 July 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 July 2019

Need advice : urgently
by David Fitz (Jul 24)

45 days is not a long time, with your spleen receding again there's all sorts of movement going on inside you - especially when it was large at diagnosis.
It will settle - it's really common

by alexmcpee (Jul 24)

Hey,
I too had 22cm Spleen at diagnosis and went back to normal after about 6weeks. I had some pain in that area as it returned to its normal size but it was felt in my back rather than the front.

by Ontasigna (Feb 19)

Hi all,
Need your advice/suggestions.
I have pain in my left upper abdomen since last 4 days. My wbc count is normal- 5300.
I had enlarged spleen 22 cm at dx - 45 days back and i am currently on
Category: Treating CML

Replies: 2

Last updated: 24 July 2019
David Fitz on 24 July 2019

Category: About CML

Replies: 3

Last updated: 24 July 2019

UK CML Patient Day 2019 - Leeds, 21st September
by David Fitz (Jul 24)

I would hope that issue was specific to the location last year and that the audio is easier to follow at the Leeds venue this year.

David.

by Nimbus2 (Jul 24)

Last year's meeting was excellent, but I really struggled in hearing some of the presenters over the sound system. Those who spoke more quietly or at a distance from the microphone were

by alexmcpee (Jul 24)

Looks great I may attend this. I am headed up to Kings College Hospital today for the talk at 2 - 4:30. I’ll be using more as an opportunity to meet fellow CML’ers. But of course listen

by David Fitz (Jul 24)

For those patients in the UK, the annual CML Patient day will be in Leeds this year on September 21st. It's a great day to learn more about CML, and get the opportunity to be able to ask the
Category: About CML

Replies: 3

Last updated: 24 July 2019
Vikram on 28 June 2019

Category: Uncategorised

Replies: 10

Last updated: 24 July 2019

Question?
by alexmcpee (Jul 24)

I would concentrate on what you have CML and not what you don’t have. I can see you are suffering from much anxiety I do get it. Live your best life, you’re doing so well I would be so

by Vikram (Jul 24)

One more question
CML and Cml treatment (tki IMTINIB.....) increases risk of diabetes
PLEASE REPLY
ANY IDEA.....

by alexmcpee (Jul 15)

Wow you’re doing great you’ve got nothing to worry about. As the others have said you don’t need the evidence, the evidence we have says you’ll live a normal life span and

by Vikram (Jul 13)

Thanks for reply
How long undetectable possible?? (2011, 12,13,14,15,16,17,18 undetectable)

( lifetime possible????)
Any idea..
Any research...
HOW LONG TFR POSSIBLE??? (ONLY 2 YEAR???)(
Category: Uncategorised

Replies: 10

Last updated: 24 July 2019
Koncho tsering on 15 July 2019

Category: Blood tests

Replies: 17

Last updated: 23 July 2019

My father diagnosed with CML
by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by scuba (Jul 22)

If he takes Veenat with food (bread / oatmeal), he will likely not have any nausea.
I took Gleevec back in the day in the middle of a meal, not at the beginning or end.

by Gian P (Jul 22)

My doctor says that is the drug that cause the hgb to go down and that causes fatigue etc, she insists that food won’t do much, but i try eating enriched Iron food as often as i can, and
Category: Blood tests

Replies: 17

Last updated: 23 July 2019
Shekhar on 22 July 2019

Category: About CML

Replies: 6

Last updated: 23 July 2019

Please advice!!!!!
by Shekhar (Jul 23)

Thank You, AlastairC and Israel,
I will definitely put a topic of discussion with my doctor on my next visit. All the information I went through were very helpful and helped me a lot.

by israel (Jul 22)

Hi Shekhar,
Congratulations on your results.
I asked a similar question on this forum some time ago and received great info and support from members of this forum.
You might be interested in reading

by AlastairC (Jul 22)

Shekhar, I am following the protocol of the Destiny Trial, and am currently PCR 0.01% 8 months after stopping taking imatinib.. There is a lecture from Professor Clarke which explains the approach

by Shekhar (Jul 22)

Thank You, Chrissie! I will definitely talk to my doctor to reduce to 300mg and so on. I also read the information in the home page. It was very helpfull and had some clear idea on how to move
Category: About CML

Replies: 6

Last updated: 23 July 2019
Jenny9391 on 20 July 2019

Category: About CML

Replies: 6

Last updated: 23 July 2019

Help, advice, thoughts.
by Shekhar (Jul 23)

No, we chose to stay on medication. It takes time, I think the best option(Medication) to go with rather than going for transplant. It’s good news that the spleen is back to normal. So let

by Jenny9391 (Jul 22)

Shekhar, did you go on to have the transplant?

by Jenny9391 (Jul 22)

Yes we are in the uk. We are under birmingham childrens hospital. I have no idea what the numbers are to be honest i wouldnt know how to use them. i just know that shes got a detectable bcr-abl. As

by Shekhar (Jul 22)

Hi jenny,
I got diagnosed CML at the age of 17. Right now I am 31. It has been almost 14 years I have been under medication and now I am living a normal life and happy married life. I have a
Category: About CML

Replies: 6

Last updated: 23 July 2019
Refaye on 15 April 2012

Category: Uncategorised

Replies: 14

Last updated: 22 July 2019

Staying Fit after getting CML
by Gian P (Jul 22)

I understand, and certainly agree that we are all more careful about what we eat, and what we do, i feel better than when i was CML free, and i will continue to thrive for my health, and yes, i am

by Shekhar (Jul 22)

Hi,
I am on Medication since 2004. I have been taking Gleevic 400mg daily. I also had the same concept, that CML patient should not do heavy exercise. But since last two years, i have by

by scuba (Jul 22)

Gian - it's just data. CML is no longer a terrifying disease it once was due to advances in treatment. Patients who achieve CCyR (> 95%) live normal lives. So most of us will have other

by Gian P (Jul 21)

Scuba, i really appreciate your optimism, and makes me feel better the moment i hear it! Thank you , also, is that part of your approach? Do you think positive thoughts help or you mean something
Category: Uncategorised

Replies: 14

Last updated: 22 July 2019
chrissie on 22 July 2019

Category: Clinical trials

Replies: 2

Last updated: 22 July 2019

Increased dosage - again
by chrissie (Jul 22)

Thanks David. Yes i knew about drinking it in apple juice but have avoided this over the past 10 yrs as i would imagine the taste is foul. However if I have to go onto 400mgs again and I get

by David Fitz (Jul 22)

If you are put back on the large tablets in the future, don't forget you can dissolve imatinib and drink it.
https://www.pharma.us.novartis.com/sites/www.pharma.us.novartis.com/file...
Look at

by chrissie (Jul 22)

Well I am now back on 300mgs imatinib again as of tomorrow after taking 200mgs since Jan 2019. My PCRs have slowly risen from 0.004 (Dec 2018) to 0.05 (July 2019). Still MMR and safe and my haem was
Category: Clinical trials

Replies: 2

Last updated: 22 July 2019
brandyhewitt90 on 15 November 2015

Category: Uncategorised

Replies: 5

Last updated: 21 July 2019

Diagnosed sept. 18 2015
by Gian P (Jul 21)

Hi Denise, i am having the same pain in my lower hip, lower back... i also work at a restaurant so i walk a lot.. and i was giving that the reason, but i doubted as well.
Thank you for sharing

by Felix (Jul 21)

Hello Gian,I have been on 50mg Sprycel for about 4 months now .Within a few weeks I got blurry vision, It didn't happen gradually just woke up one morning and realised I couldn't read small

by Gian P (Jul 21)

I am just experiencing the same symptoms too lately, i am on Sprycel 50mg and while shortage of breath is not a problem, i have this blurry vision, heavy head and general body aches, it feels like

by sandy craine (Nov 19)

Hi ... welcome to this forum. I agree with Karen that you should ask your clinician to investigate the shortness of breath you are experiencing with dasatinib. You are right that low HGB can cause
Category: Uncategorised

Replies: 5

Last updated: 21 July 2019
mayita on 12 July 2019

Category: Treating CML

Replies: 6

Last updated: 19 July 2019

Milk Thistle, Dandelion Tea, Multivitamin
by mayita (Jul 19)

Correct, I stopped Milk thistle (I was also overdosing), and the chemo pills too (doctor requested). The oncologist did a Resistant Panel Mutation test to rule out mutation. He said the Bosulif is

by israel (Jul 19)

Interesting find Mayita.
So:
Concomitant use with a strong or moderate CYP3A inhibitor increased bosutinib Cmax and AUC compared to BOSULIF alone/[see Clinical Pharmacology (12.3)]/which may

by mayita (Jul 18)

Hi Israel,
see under "Drug interactions"; from the link you sent. It says:
DRUG INTERACTIONS
•Strong and Moderate CYP3A Inhibitors: Avoid concomitant use with BOSULIF.

by Sunny (Jul 15)

Hello Mayita,
Thanks for the info.
If I understand correctly from your post, 1- Bosulif metabolizes via enzyme CYP3A4.
Category: Treating CML

Replies: 6

Last updated: 19 July 2019
Gian P on 18 July 2019

Category: Blood tests

Replies: 4

Last updated: 19 July 2019

1 year Anniversary and my BCR ABLE not undetectable yet
by Gian P (Jul 19)

Thank you again,
i will make sure to talk to her about these other TKI drugs and see where it takes me.
thank you.

by ColoradoGuy (Jul 19)

Correction 10% is early molecular response not PCyR. I switched from dasatinib because I could not reach 0.1 and then went up to 1.2. It is trending back down on Tasigna thank God (0.36 last

by Gian P (Jul 19)

Thank you,
my Onc is not as worry as i am, but today i told her and she insists on keep doing CBC weekly and CBR abl monthly to monitor any changes, she mentioned a possible Bone Marrow transplant

by ColoradoGuy (Jul 19)

I don't know your history regarding mutation testing and other TKIs but I would imagine that changing TKI would be in order more importantly than changing doctor. I think going above 10 is defined
Category: Blood tests

Replies: 4

Last updated: 19 July 2019
Tanya Cuffe on 17 July 2019

Category: Uncategorised

Replies: 2

Last updated: 18 July 2019

Pleural effusion sympyoms?
by Tanya Cuffe (Jul 18)

Thanks for that!Saw Doc(GP), today he listened to my chest and said it seemed clear...I had 2 flu shots because he looked it up and said it was advisable...think it may be that making me crook...

by Sarah63 (Jul 18)

well, yes you can get PE on 50 mg of Sprycel. Depends on your sensitivity. You should definitely let your doc know. That’s exactly what your doc is for (how I see it). But also,

by Tanya Cuffe (Jul 17)

Hi friends.Quick question.Have been on Sprycel 50mg for 2 months,all going ok however over last week or so my breathing is becoming difficult and I have bit of a cough and am more feverish than
Category: Uncategorised

Replies: 2

Last updated: 18 July 2019
Ontasigna on 15 July 2019

Category: Treating CML

Replies: 4

Last updated: 17 July 2019

Need Help : Feeling cold all the time
by scuba (Jul 17)

Have your thyroid checked and verify TSH, T4, T3 levels (total and free) are normal.
TKI's can impact the thyroid especially during TKI withdrawal (treatment free remission). It did mine

by Tanya Cuffe (Jul 17)

I have had chills pre diagnosis and also now still.It is most unpleasant however I believe it is just one of the symptoms of CML and can also continue on meds.I find it’s just something I

by Ontasigna (Jul 17)

Have chills sometimes. Feel cold most of the times

by alexmcpee (Jul 15)

Hi there,
I am on Tasigna for 15 months not at MMR yet I defo feel the cold more than I used to. When you say chills do you mean you sometimes have the shakes?
Alex
Category: Treating CML

Replies: 4

Last updated: 17 July 2019
Ontasigna on 12 July 2019

Category: Treating CML

Replies: 6

Last updated: 17 July 2019

Nilotnib & Electrolyte
by David Fitz (Jul 17)

Check with your doctor if you're at all concerned, but its hard to see a problem with that.

by Ontasigna (Jul 17)

occasionally. Probably once in 2 months for re-hydration.

by David Fitz (Jul 16)

Are you talking about taking them occasionally, to keep hydrated through a bout of diarrhea or something? Or more habitual usage?

by Ontasigna (Jul 16)

Yes. Like Dioralyte. I read somewhere "sodium citrate" in Dioralyte reduce Nilotnib absorption? Is that true?
Category: Treating CML

Replies: 6

Last updated: 17 July 2019
Chuckster on 14 July 2019

Category: Side effects

Replies: 4

Last updated: 16 July 2019

Thoracentesis: What to expect.
by Chuckster (Jul 16)

Thanks and all the best to you also!

by Mick E (Jul 16)

Thanks for the reply Chuck
i started 100mg a couple of weeks ago and experiencing exactly the same problems. Had chest x Ray today to check for fluid. Pleased to hear you are doing well

by Chuckster (Jul 16)

Hi,
My dosage has been lowered from 100mg to 80 mg to 50mg and just recently to 20mg.
This is all over a span of approx 1 and a half years.
CML was confirmed on FEB 12, 2018 till present.

by Mick E (Jul 16)

Hello Chuck
cannot offer any advice on the procedure to drain your chest but I’m interested to know why you were dropped to 20mg dosage of sprycell?
i recently started taking 100mg but that
Category: Side effects

Replies: 4

Last updated: 16 July 2019
vonnie on 10 July 2019

Category: Uncategorised

Replies: 3

Last updated: 16 July 2019

nausea
by vonnie (Jul 16)

Hi thanks all for your support it's not so bad this week cheers

by Mick E (Jul 16)

I used to go for a steady ride on the pushbike about an hour after taking meds, found that that just about stopped the feeling of nausea.

by alexmcpee (Jul 15)

I have felt this before, if I am anxious I tend to feel it too. Sometimes we put all down to CML when it could well be anxiety. When I am not anxious no nausea.
Alex

by vonnie (Jul 10)

hi i havent been on for a while but i seem to be feeling nausea most mornings for about an hour is this common thanks in advance
Category: Uncategorised

Replies: 3

Last updated: 16 July 2019
Nimbus2 on 15 July 2019

Category: Treating CML

Replies: 1

Last updated: 15 July 2019

Diagnosed young versus diagnosed old
by David Fitz (Jul 15)

Was that Gianantonio? I’ve spoken to him before and that was along the lines of his opinion.
I did chat with my haematologist about TFR in older patients, and she said that there tended

by Nimbus2 (Jul 15)

I have viewed the medical presentations for CML Horizons 2019 provided at the link below:
https://cmlsupport.org.uk/article/cml-horizons-2019-presentations-and-vi...
One of the presenters states
Category: Treating CML

Replies: 1

Last updated: 15 July 2019
Justine on 12 July 2019

Category: Blood tests

Replies: 4

Last updated: 13 July 2019

Latest PCR test results - do low blood counts persist indefinitely?
by Justine (Jul 13)

Thanks, good to know, appreciate that! Take good care.

by Justine (Jul 13)

Thanks, appreciate the reassurance. It's great that Sprycel has worked so well for you!

by Rick B (Jul 13)

I have counts like you. My doc says that it is a new normal for me and to not fret. Congrats on your bcr-abl score. Nice.

by Rick B (Jul 13)

I have counts like you. My doc says that it is a new normal for me and to not fret. Congrats on your bcr-abl score. Nice.
Category: Blood tests

Replies: 4

Last updated: 13 July 2019