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ishbc6 on 22 February 2022

Category: Treating CML

Replies: 2

Last updated: 23 February 2022

**Tasgina causing bone marrow problems
by ishbc6 (Feb 23)

Since I have been on Tasigna (Nilotinib) I have had lowering platelet counts. Currently just below 50. Doctor is now wanting to take another look at bone marrow, tomorrow.

i

by sandy craine (Feb 23)

Hi Bryan,
I am not sure about the 'more sensitive bone marrow' but some patients are more or less sensitive to TKIs. TKis in general can cause low blood cell counts and if this happens it is

by ishbc6 (Feb 22)

Hello All,
Has anyone heard or had any experience with TKI's (specfially Tasigna) lowering your WBC and Platelets drastically? I know it said its a side effect of the meds.

My doctors
Category: Treating CML

Replies: 2

Last updated: 23 February 2022
Michaelwst on 9 February 2022

Category: Treating CML

Replies: 2

Last updated: 11 February 2022

Started my trial with PGE1 on CML Stem Cell
by Michaelwst (Feb 11)

Will do. End of March will have my next check. Will know by then what this one and half months bring.

by scuba (Feb 9)

Very interesting! Keep us posted.

by Michaelwst (Feb 9)

After taking TKI for over two years, last two tests were below 0.01% but still not undetected yet. Have read the article about PGE1 and Misoprostol for eradicating CML stem cell. I couldn't
Category: Treating CML

Replies: 2

Last updated: 11 February 2022
Pusser on 31 January 2022

Category: Treating CML

Replies: 6

Last updated: 2 February 2022

Hello and a question
by Pusser (Feb 2)

Hi Felix,
Thank you for the heads up on that one :)
Really appreciated :)

by Felix (Feb 1)

Hi, not sure where you live ,but don't go to The Royal Liverpool.Their clinic is awful you wait for hours past your appointment time and the two specialists I saw there were absolutely horrible

by Pusser (Feb 1)

AlasatairC,
Thank you so.much, this exactly the page I was looking for.
Kind regards

by AlastairC (Feb 1)

If you click the "Patient Info" tab at the top of this page the second item on the drop down is a list of specialist CML Centres. I believe you can ask your GP to refer you to the most
Category: Treating CML

Replies: 6

Last updated: 2 February 2022
ckquinn on 1 February 2022

Category: Treating CML

Replies: 3

Last updated: 1 February 2022

TFR Fail
by Buzzm1 (Feb 1)

ckquinn, be your own best advocate; since your CML is at a very low level and you had successfully maintained undetected over a long period of time on 50mg, there is no logical reason why you

by ckquinn (Feb 1)

Much appreciated, thanks for this, my preference would certainly 50mg, but will see what she says.

by AlastairC (Feb 1)

I failed TFR 2 years ago. I had reduced my imatinib from 400mg to 200 mg for a year, and then stopped. I stayed in TFR for 17 months and them went over 0.1% BCR-ABL. I wanted to restart on 200mg but

by ckquinn (Feb 1)

After much soul searching and research I decided to try and go treatment free, almost 7yrs since diagnosis it had to be worth it.
However after 4 moths I'm no longer in MMR, I have an appointment
Category: Treating CML

Replies: 3

Last updated: 1 February 2022
S Davis on 1 February 2022

Category: Treating CML

Replies: 0

Last updated: 1 February 2022

Sprycel and management of pleural effusion
by S Davis (Feb 1)

I have been on Sprycel 80 mg for about 2.5 years now for CML and have responded well.
Last fall I developed a persistent cough and shortness of breath with exertion. I went to urgent care and was
Category: Treating CML

Replies: 0

Last updated: 1 February 2022
Skeltonn on 20 February 2019

Category: Treating CML

Replies: 3

Last updated: 31 December 2021

Sprycel and weight gain
by Myra (Dec 31)

My son gained weight in the last few months. He is on Dastanib from a year now. But not sure is it from the medicine or his eating habits.

by Chuckster (Feb 25)

No. Just the opposite.
I have experienced weight- loss of approx 20 lbs: From 195 lbs to around 175 lbs.
From Feb 2018 to Feb 2019
Holding around 175 lbs for the last 3 months.
Had to stop the 100mg

by Bill Miller (Feb 21)

Yes and yes. I had terrible fatigue on 140mg. I also waxed and waned between diarrhea and constipation, which amplified the fatigue. And I was only on at that dose for 3.5 weeks. I did also gain

by Skeltonn (Feb 21)

Thank you for the reply. I have gained about 30 pounds in the last 12 months. I am 12 months from first being diagnosed and still trying to navigate this disease.
Category: Treating CML

Replies: 3

Last updated: 31 December 2021
Zaccar on 30 December 2021

Category: Treating CML

Replies: 2

Last updated: 30 December 2021

Undetectable with 200mg tasigna in 12 months.
by Zaccar (Dec 30)

Hi,
Great suggestion. With one pill a day I have struggled less and less with the fasting. But that's something i'll discuss with my next doctor. I'm planning to change to a

by sandy craine (Dec 30)

Hi Zaccar, thanks for your post which is honest and really interesting. One question I do have is - given that you travel such a lot, would another 2Gen TKI be easier for you - one without a fasting

by Zaccar (Dec 30)

Howdy,
I was diagnosed last year with april 2020 with CML, my treatment is working very well at present. I didn't want to be one of those people that used the site when they needed the help then
Category: Treating CML

Replies: 2

Last updated: 30 December 2021
nilotinib on 15 December 2021

Category: Treating CML

Replies: 0

Last updated: 15 December 2021

Imatinib Fenofibrate
by nilotinib (Dec 15)

I have been prescribed Fenofibrate for my cholesterol.I am taking Imatinib 400mg amlodipine 10mg and 10mg Ezeterol.
From what I have read Fenofibrate should not be taken when drinking alchohol.
My
Category: Treating CML

Replies: 0

Last updated: 15 December 2021
Ontasigna on 3 December 2021

Category: Treating CML

Replies: 1

Last updated: 6 December 2021

Tasigna : dosage gap 11.30 hrs
by ColoradoGuy (Dec 6)

I very much doubt that feeling tired has anything to do with when you are taking your dose (especially half an hour from recommended time). I try as much as possible to take them 12 hours

by Ontasigna (Dec 3)

Hi all,
I have taken my tasigna dose at a time gap of 11.30 hrs as supposed to 12 hrs gap.
I am feeling very tired and joint and muscle pain.
Is it bcoz of dose??
I am on 400mg bd
Kindly share your
Category: Treating CML

Replies: 1

Last updated: 6 December 2021
rebeccacrosby on 4 December 2021

Category: Treating CML

Replies: 2

Last updated: 6 December 2021

New Diagnosis/tasigna ?
by rebeccacrosby (Dec 6)

Hi John,
Thank you for your response. The pain from the enlarged spleen did last awhile but was gone after a week on Tasigna. This pain feels like it is something different from the spleen, but it

by johnw1001 (Dec 5)

Hi,
With a very high WBC it would not be unusual for your spleen to be enlarged and for the spleen to impose on to the stomach and create pain and discomfort as well as indigestion-I understand that

by rebeccacrosby (Dec 4)

Hello all,
I was just diagnosed on Oct 30th, had a WBC 425,000 and very enlarged spleen. I am a 45 year old female with a fairly healthy lifestyle. I started Tasigna on Nov 16th and developed both a
Category: Treating CML

Replies: 2

Last updated: 6 December 2021
TimoD on 15 November 2021

Category: Treating CML

Replies: 2

Last updated: 16 November 2021

FDA approves asciminib (commercially Scemblix) in the US
by sandy craine (Nov 16)

The CML Support Group is one of the patient organisations involved in the upcoming NICE TA (technology appraisal) for asciminib for the NHS use as 3rd line therapy in CML.
Asciminib for treating

by johnw1001 (Nov 16)

Hi Timo,
Just to add a few points.FDA seemed to have given this tki fairly rapid approval -it granted so called breakthrough therapy designation in February 2020 and with a final submission made to

by TimoD (Nov 15)

https://www.novartis.com/news/media-releases/fda-approves-novartis-scemb...

Hi there
I did not find any news on this on this forum but there is a new kid on the block. It has a name -
Category: Treating CML

Replies: 2

Last updated: 16 November 2021
MartinZA on 3 November 2021

Category: Treating CML

Replies: 11

Last updated: 10 November 2021

Encouragement for turtles
by MartinZA (Nov 10)

Thank you Tater1 - all the best for your recovery too!
Sorry - I've seen that all my messages are now collected at the bottom and not replies to individual responses!
Have a great week

by MartinZA (Nov 10)

Hi ColoradoGuy
Thank you for your message - I'm glad my story has been of some use. These bounces really cause us to feel worried and anxious, but it looks like you are on an overall

by MartinZA (Nov 10)

Hi Sandy and scuba
Thank you so very much for your responses to my post and for the encouragement and kind wishes. Sandy, your story helped me such a lot when I was first diagnosed, and it

by MartinZA (Nov 10)

Hi Timo
Sorry for the late reply - in between power outages and some crazy times at work, I haven't been back to visit the site. I agree with you that more and more people will become
Category: Treating CML

Replies: 11

Last updated: 10 November 2021
Kimbie3116 on 27 February 2021

Category: Treating CML

Replies: 6

Last updated: 9 November 2021

Help! Mouth sores with Imatinib???
by jonnie turpie (Nov 9)

Thanks Very much. I will try this.

Jonnie

by sandy craine (Nov 9)

Mouth sores/canker sores/sore tongue etc. can be a sign of vitamin B12 deficiency. Imatinib (or other TKI) may well be indicated in suppressing your red blood cells count - HGB, B12 can help support

by jonnie turpie (Nov 9)

Hi
I am sorry you are experiencing these mouth sores and hope you might be feeling better.
After 3.5 months of taking 400mg Imatintib I have developed a sore throat and mouth ulcers on the

by alexmcpee (Feb 27)

I’ve been having fairly persistent Geographic Tongue since being Nilotinib but no other mouth sores. This is defo TKI as they started when I started meds. They don’t hurt they are just a
Category: Treating CML

Replies: 6

Last updated: 9 November 2021
Ontasigna on 1 November 2021

Category: Treating CML

Replies: 0

Last updated: 1 November 2021

Ayurvedic herb(kutki powder) with Nilotnib
by Ontasigna (Nov 1)

Hi All
Is it safe to consume ayurvedic herbs when on nilotinib( any interaction)??
Example: Kutki powder
Category: Treating CML

Replies: 0

Last updated: 1 November 2021
Ontasigna on 28 October 2021

Category: Treating CML

Replies: 2

Last updated: 28 October 2021

RTPCR results - interpretation
by Ontasigna (Oct 28)

thanks scuba!!

by scuba (Oct 28)

Yes, indeed you should worry. You will need to worry about how to pay for retirement because you are going to live a long life.
You need to worry about your heart health and other things instead of

by Ontasigna (Oct 28)

Hi All
Below are the results of my test today. The observed copies of ABL1 seems to be less.
Anything to worry??
P210 (b3a2, b2a2) major transcript Not detected
P190 (e1a2) minor transcript Not
Category: Treating CML

Replies: 2

Last updated: 28 October 2021
johnw1001 on 1 September 2021

Category: Treating CML

Replies: 77

Last updated: 24 October 2021

Third or booster Covid jab for "vunerable" patients in UK
by Nimbus2 (Oct 24)

This is another take on the situation:
https://www.independent.co.uk/voices/covid-vaccine-uk-immunosuppressed-p...

by Nimbus2 (Oct 24)

I have responded, John, to your private message. Something is very wrong. My GP indicates that no information has been received from the specialist. The trust flatly refused to talk to me as an

by johnw1001 (Oct 24)

Nimbus I have sent you a private message -on receipt may we discuss a possible course of action further.
This shows a total dereliction of duty by a consultant/NHS trust and a difficult GP .
The

by Nimbus2 (Oct 24)

After weeks, my GP will not move forward with the Third Primary Dose without a consultant's letter. The hospital trust will not speak to patient individually. So I am locked out.
Freedom of
Category: Treating CML

Replies: 77

Last updated: 24 October 2021
Ontasigna on 21 October 2021

Category: Treating CML

Replies: 2

Last updated: 22 October 2021

Nilotinib Night sweat and severe joint pain
by Tanya (Oct 22)

Hi, I'm on Tasigna from May 2021 and experienced the same problems in mid August when heat wave lasted 4 weeks - up to +40C in the shadow.

Unfortunately it was in combination with my second

by sandy craine (Oct 22)

Hi, you may have some kind of infection. Do you have access to your most recent PCR result?
Sandy

by Ontasigna (Oct 21)

Hi All
Recently, I got exposed to high temperature(32 deg centigrade). Since then I have been having severe joint and muscle pain and night sweats like I used to have before diagnosis.
I am on
Category: Treating CML

Replies: 2

Last updated: 22 October 2021
Betty8 on 20 October 2021

Category: Treating CML

Replies: 5

Last updated: 21 October 2021

Your expert advice needed pls- 2 Failed TKI's, BCR ABL 29%... what next?
by wshi2001 (Oct 21)

Hi, Betty,
Have you tried Nilotinib yet? I also started with imatinib, it did not work so well. Then I was switched to Dasatinib, similarly, it gave me a lot of side effects. I asked my

by Betty8 (Oct 20)

Thankyou so much for your quick response Scuba.
I have a meeting with my haematologist tomorrow so will tell them about your experience with Dr. Jorge Cortes then.
it’s reassuring to

by scuba (Oct 20)

I understand now. I went through a similar phase. Although my doctors waited until my neutrophils fell to 0.4 before stopping dasatinib.
What they did for me and I suggest for you in consultation

by Betty8 (Oct 20)

Hi Scuba.
I was diagnosed last August 2020.
They stopped my Dasatinib last week as my blood counts were low and wanted to give me a week break to see if they stats recovered.
BCR ABL 29% /
Category: Treating CML

Replies: 5

Last updated: 21 October 2021
Justine on 30 September 2021

Category: Treating CML

Replies: 6

Last updated: 1 October 2021

Question for everyone about TFR
by Felix (Oct 1)

Hi Justine ,I was diagnosed in November 2017 ,I am sure if you went on Dasatinib 20 mg you would get to be undetected , it works slightly differently than Imatinib it should mop up your residue so

by Justine (Oct 1)

Thanks John for all that good information. I appreciate it and you!
You and Denise both suggested a lower dose. My doctor is in fact a CML specialist and I will talk with him about this at next

by johnw1001 (Oct 1)

Hi Justine,
In direct response to your question about why we as CML patients would want to go for TFR or even dose reduction then I would have two major reasons.The first is that even though tki

by Felix (Sep 30)

Hi, that's certainly low enough to go on to 20 mg ,I am on that and I feel much better than when I was on Imatinib.I was tired all the time ,had the bad rash and hooded eyes ,all that went
Category: Treating CML

Replies: 6

Last updated: 1 October 2021
sandy craine on 1 October 2021

Category: Treating CML

Replies: 0

Last updated: 1 October 2021

Professor Hughes’ CML publications of the month:
by sandy craine (Oct 1)

https://www.cml-foundation.org/science-education-mobile/341-science-cml-news-publications-2019.html
Category: Treating CML

Replies: 0

Last updated: 1 October 2021