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Ontasigna on 5 June 2021

Category: Treating CML

Replies: 2

Last updated: 13 June 2022

Terrible myscle and joint pain
by An (Jun 13)

My husband has severe joint pains,he is taking dasatinib (100 mg) ,he used to have back pains,but he said the severity of pains increased after starting TKI.
Somethings that helped ,taking vitamin d

by MarkusShiza (Jun 13)

Hi, I've suffered from lower back pain for about 4 years. I've tried all the drugs I've been prescribed, and I can tell you that it's all complete nonsense. And to get rid of back

by Ontasigna (Jun 5)

Hi
I am having very severe muscle and joint pains

Especially from hip to toe.
Its a same pain i haf before diagnosis.
I am on nilotinib since 2.5 ys and am in remission 0.0028(April 2021)
Is
Category: Treating CML

Replies: 2

Last updated: 13 June 2022
Poppy Darling on 13 June 2022

Category: Treating CML

Replies: 2

Last updated: 13 June 2022

CML bloods down from 50 to 10 in two weeks, what does this mean?
by Poppy Darling (Jun 13)

Thank you for this. Yes, I’m on 400mg and I will ask the questions you state; fantastically helpful.

ref diet and side effects, I’m across this.

best

by scuba (Jun 13)

It means imatinib is killing off the CML cells and your white blood count is dropping towards normal. I assume you are taking 400 mg.
You should ask your doctor:
1. What is my FISH level percent?
2

by Poppy Darling (Jun 13)

Hi
Four weeks ago, after no symptoms of CML, but after bloods analysed for a gynaecological issue and hair shedding, further bloods were requested and tests which showed I had CML.
I had been taking
Category: Treating CML

Replies: 2

Last updated: 13 June 2022
Poppy Darling on 29 May 2022

Category: Treating CML

Replies: 12

Last updated: 30 May 2022

Has anyone tried anti parasitical black walnut, cloves and wormwood? And hair loss
by Poppy Darling (May 30)

Quite! Here's to a long life and few side effects PD

by AlastairC (May 30)

Hi Poppy, if you want to have a look at what else you can do to help on the CML front, it would be useful to get you vitamin D level checked. There is a lot of correspondence on the forum about Vit

by AlastairC (May 30)

Hi Poppy
Not sure whether your radiotherapy might account for it - mine was targeted at an area which included my pelvis where some of the marrow production of white cells happens.
Regardless of

by Poppy Darling (May 30)

Hi

Thanks for replying. I had two bouts of chemo (few side effects) and daily doses of targeted radiation for six weeks. Although the treatment side effects were debilitating -
Category: Treating CML

Replies: 12

Last updated: 30 May 2022
Sherley on 1 May 2022

Category: Treating CML

Replies: 2

Last updated: 4 May 2022

Skin rash with blisters and blurry vision
by Sherley (May 4)

Hi Mamodol. Thanks for responding. I’ve tried several drops with no improvement. Also did you apply a cream to the rash to feel better? I saw my my oncologist

by mamodei (May 3)

I am much more susceptible to any skin infections on Sprycel. I did have some blurry vision, but it was dry eye. I'm not sure if the dry eye was caused by the TKI directly, occurred

by Sherley (May 1)

Hi, it’s been awhile since I’ve posted. I was wondering if anyone has experienced blisters and severe itching between toes. I’ve had this going on
Category: Treating CML

Replies: 2

Last updated: 4 May 2022
Nicolem2022 on 10 April 2022

Category: Treating CML

Replies: 5

Last updated: 16 April 2022

Starting nilotinib - advice please
by Nicolem2022 (Apr 16)

Thanks Becca. I’m also starting on 300mg dose so I’ll bear in mind it might be much worse to begin with. I’ve got quite a lot of questions for the nurse next week relating to what

by cmhall604 (Apr 16)

Hi,
Just wanted to add that your blood panel might be out of whack at the beginning but should get back to normal levels over time. My wife had elevated liver enzymes (ALT and AST) and

by rebeccacrosby (Apr 15)

I was diagnosed in October and started Nilotinib in November. It was quite painful for a week as it killed the cells so quickly. I had horrible bone pain, particularly in my shins. Good news is my

by Nicolem2022 (Apr 15)

Thanks Justine
Category: Treating CML

Replies: 5

Last updated: 16 April 2022
MartinZA on 14 September 2018

Category: Treating CML

Replies: 11

Last updated: 15 April 2022

Update on moving "backwards" from dasatinib to imatinib
by MartinZA (Apr 15)

Hi abrahamlg
Thank you for your post! Sorry that I'm only replying to your questions now, but I haven't checked the forum in a while due to busy work deadlines.
First, I

by abrahamlg (Mar 29)

Hi MartinZA, Very sorry to bring back to life an old post. Nevertheless, the reason is because I switched backwards from dasatinib to imatinib 1 month ago.
I was researching info of doing this and I

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive
Category: Treating CML

Replies: 11

Last updated: 15 April 2022
Felix on 28 March 2022

Category: Treating CML

Replies: 0

Last updated: 28 March 2022

VITAMINS UK
by Felix (Mar 28)

Hi All ,If anyone is looking for a good company to get vitamins from try NUTRAVITA.They are an amazing company with fabulous customer service .When you register with them you get a discount ,then
Category: Treating CML

Replies: 0

Last updated: 28 March 2022
SageH on 20 March 2022

Category: Treating CML

Replies: 2

Last updated: 23 March 2022

Dose Reduction on Sprycel
by thomas.c (Mar 23)

I feel your pain, but i’m afraid a dr will not recommend to do any change if the system works, and even though your feelings are valid, until there is something measurably wrong they will

by scuba (Mar 20)

Hi Sage,
I was treated on 20 mg dasatnib while still positive for CML, by Dr. Cortes (world expert in CML) and achieved non-detection status. I have since stopped all therapy one year ago and

by SageH (Mar 20)

I was diagnosed in June 2021 and started on 100 mg of Sprycel. Fortunately I had a very robust response, but suffered from fatigue, upset stomach, rashes, and headaches. Ultimately, I was able
Category: Treating CML

Replies: 2

Last updated: 23 March 2022
Justine on 25 January 2022

Category: Treating CML

Replies: 24

Last updated: 14 March 2022

For US patients
by hannibellemo (Mar 14)

I like Trey's idea of rotating drugs so the side effects never have a chance to take hold for those of us who tend to develop all the "fun" side effects even though the drugs work very

by ColoradoGuy (Mar 12)

India jumps on that pretty quick but even three year wait to pay $50 a month is a welcome change.

by Buzzm1 (Mar 11)

ColoradoGuy, although I saw the same information, that you are referring to, posted on the web, I am highly skeptical of the July 4, 2023 U.S. patent expiry for Tasigna. I have a call into

by ColoradoGuy (Mar 11)

I believe Nilotinib comes off US patent July 4th 2023.
Category: Treating CML

Replies: 24

Last updated: 14 March 2022
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