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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
DJ on 14 June 2019

Category: Side effects

Replies: 14

Last updated: 12 July 2019

Is Sprycel bad for side effects?
by DJ (Jul 12)

THank you for all your replies.
She is having heart palpitations when she is out of breath. She has to sit down. Did you guys have that? Also, it seems random - the shortness of breath/

by alison (Jun 25)

My husband had to go off Sprycel because of shortness of breath. He never developed pleural effusion. He is 75 ad in great shape. He was on 70 mg and then 50 mg. I have followed

by DJ (Jun 25)

Thanks Chuck
He put her on the sprycel 20mg because her side effects were so bad with the others. He was hoping she could tolerate that.
It's been two weeks and we've not seen him yet with a

by Chuckster (Jun 25)

Real sorry to hear your mom is getting very sick on the 20MG of Sprycel.
What does her oncologist say about the meds and the real bad side effects etc?
All the best to your mom!
Category: Side effects

Replies: 14

Last updated: 12 July 2019
gbatalha on 16 April 2019

Category: Blood tests

Replies: 13

Last updated: 12 July 2019

bcr-abl 12 months
by David Fitz (Jul 12)

Congrats! Enjoy the vino!!
David.

by AlastairC (Jul 12)

Enjoy the sardines and the wine!

by gbatalha (Jul 12)

Alastair, Job and David,
You were all right.
I just received the 15-month bcr-abl and the value is 0,059%. So, with a 3 month delay I was able to reach the MMR holy grail!!
Just

by David Fitz (Apr 24)

If I squint really hard, I can kind of see her point. 2.2% after 4 months is fab - you want to be under 10% at 3 months. So not to get to 0.1% at 12 months could be viewed as disappointing in that
Category: Blood tests

Replies: 13

Last updated: 12 July 2019
catz555 on 6 July 2019

Category: Uncategorised

Replies: 6

Last updated: 11 July 2019

Does ones hair ever come good?
by onekayaker (Jul 11)

I use to get my hair highlighted but stopped after my CML dx. I am now letting nature do it own highlighting and I call it "My Grey Pride Parade" they wave at me as if saying

by Tanya Cuffe (Jul 10)

Thanks for responding.No not on any other drugs,just tumeric,Magnesium,Multi Bs,Spirulina,Vit D and Vit E...My hair is embarrassing now but if that’s the worst thing I have to worry about...I

by onekayaker (Jul 9)

I thought my hair loss was due to my TKI but it ended up being the 1mg Lorazepam the doctor prescribed me to make me sleep at night. Gave up the sleep help for hair.

by onekayaker (Jul 9)

I thought my hair loss was due to my TKI but it ended up being the 1mg Lorazepam the doctor prescribed me to make me sleep at night. Gave up the sleep help for hair.
Category: Uncategorised

Replies: 6

Last updated: 11 July 2019
chigi on 10 July 2019

Category: Uncategorised

Replies: 4

Last updated: 11 July 2019

PCR Too Low to Quantify
by chigi (Jul 11)

Thank you for the feedback

by chigi (Jul 11)

Thanks for the quick response Scuba

by Karinne (Jul 11)

It could just be that the lab you use, increased the sensitivity of the test and an”undetected” could become “detected but”. You have to remember that “undetected

by scuba (Jul 11)

Yes, it means you are not going to die from CML.
You are in the noise of the test. The 'detection' could very well be contamination. Unless you have a trend upward from 3 consecutive tests
Category: Uncategorised

Replies: 4

Last updated: 11 July 2019
Karinne on 4 July 2019

Category: Uncategorised

Replies: 11

Last updated: 11 July 2019

Curcumin side effects
by tom888 (Jul 11)

The oxalate salts of turmeric can cause formation of stones in the bile and kidneys. Of course the goodness of using turmeric is much more than these small side effects. These side effects occur

by scuba (Jul 9)

Tom - would you refer to the article you mentioned on Curcumin causing stone formation in bile?
This is opposite to what I learned about Curcumin and bile salts. Curcumin is shown to cause

by tom888 (Jul 9)

We could search Google for the side effects of turmeric. I noticed that it can cause stomach upset and stone formation in the bile. In my case, I did the detoxification of bile and liver as

by onekayaker (Jul 5)

I drink a bottle of water as well when taking supplements
Category: Uncategorised

Replies: 11

Last updated: 11 July 2019
onekayaker on 9 July 2019

Category: Uncategorised

Replies: 7

Last updated: 10 July 2019

Article I found today
by David Fitz (Jul 10)

It is, because the 2013 guidelines remain the latest available from ELN.
There are also some NHS guidelines under development, but they need more work too.
David.

by kat73 (Jul 9)

David, I think that one you referenced is still the 2013 one.

by David Fitz (Jul 9)

Under the “Patient Info” and “Treatment Guidelines” on this site you’ll find links to the latest ELN and NCCN guidelines.
ELN are due an update to their guidance soon (

by kat73 (Jul 9)

Isn't there an even more recent update than 2013? For both ELN and NCCN guidelines?
Category: Uncategorised

Replies: 7

Last updated: 10 July 2019
Karinne on 13 June 2019

Category: Uncategorised

Replies: 10

Last updated: 10 July 2019

Update on my pcr
by chigi (Jul 10)

Excellent news!

by Karinne (Jun 28)

Thanks to all of your messages. 😁😎

by onekayaker (Jun 28)

Excellent Cari!

Steff

by chrissie (Jun 17)

Brilliant news. Grapefruit maybe? (I think i am obsessed with the stuff as it's been soooo long without one).
Seriously, well done,
Best
Chrissie
Category: Uncategorised

Replies: 10

Last updated: 10 July 2019