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bdmemphis on 25 August 2016

Category: Treating CML

Replies: 18

Last updated: 2 August 2022

Optimal (or suboptimal) response timeline
by ColoradoGuy (Aug 2)

For those worried about BDMemphis and others in similar slow responses I can confirm that BD is doing well with his treatment as of July 2022. I sometimes worry when people drop off of the

by AlastairC (Mar 13)

Hi,

Speed of response is very variable; this forum has referred to tortoises and hares on many occasions. There are people who get to MMR in 3-6 months (hares), and some who take several

by Ontasigna (Mar 13)

Hi David/sandy,
Pulling back an old post for reference.
I am just trying to understand why the pcr does not hit optimal response for few.
Considering efficasy and potent nature of nilotnib. It

by Job Guerra (Mar 13)

BDmemphis can you provide any updates? I'm curious because I also have not seen 0.1. Had 0.111 from bmb at 16 months (no mutations) but actually went up at 18 months rather than dropping that
Category: Treating CML

Replies: 18

Last updated: 2 August 2022
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
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
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
MartinZA on 23 June 2022

Category: Treating CML

Replies: 8

Last updated: 8 July 2022

Is dose reduction possible on imatinib?
by MartinZA (Jul 8)

Hi Chrissie
Thanks for your response - I had actually forgotten about the fact that people halved their doses in DESTINY trial for a year first. I think I'll go and read up on the

by MartinZA (Jul 8)

Hi Pojo
Thanks for the information - that's also something I worry about - that imatinib somehow stops working after a while. The point about frequent testing is really important, and I

by MartinZA (Jul 8)

Hi Israel
Thank you so much for sharing your story and for the detailed information! Very glad you're able to maintain MMR on 400mg, and also interesting that you first increased the dose to

by chrissie (Jul 5)

Hi there
I have been on imatinib since diagnosis in Sept 2009. In 2017 I dropped to 300mgs dose and found after about 9 months my results dropped down to MR4.5/MR5 and a couple were even 0.0000%.
Category: Treating CML

Replies: 8

Last updated: 8 July 2022
grilledcheesesamich on 23 June 2022

Category: Treating CML

Replies: 8

Last updated: 5 July 2022

It's been almost two years and still not in CMR range.
by grilledcheesesamich (Jul 5)

Thanks for all the comments everyone I really appreciate it. Sounds like I maybe had some unreal expectations based on some of the reading I've done and my Doctor's quest to get me to CMR. I

by An (Jul 1)

Cmr is complete molecular remission,I think it means non detectable on pcr,different lab has different sensitivities,so it might differ accordingly,mmr is major molecular remission that is 0.1 IS .

by JoeP (Jul 1)

There are a few milestones we all try to aspire to as CML patients. There are many acronyms and I confess I may not know them all. But in general there are 3 main milestones that I adhere to:
1)

by Christine R (Jul 1)

This may be a stupid question but what do you mean by CMR? I have googled this and it seems to say a PCR showing no BCR-ABL so i assume it is classified as undetected or 0.000 so is that what
Category: Treating CML

Replies: 8

Last updated: 5 July 2022
Poppy Darling on 20 June 2022

Category: Treating CML

Replies: 6

Last updated: 3 July 2022

Oedema on Imatinib
by Poppy Darling (Jul 3)

Hi Evie
After it first flared up it settled down. It’s worse when I wake up on my eyelids and under my eyes. After a couple of hours it disappears from my eyelids and just above my cheeks it

by Evie (Jul 3)

Hi

Has your oedema improved. I started getting it under my eyes but last few weeks it’s mostly my eyelids.

was just wondering if you have found ways to manage it

by Poppy Darling (Jun 21)

Hi,
Yes, bloods have reduced from that amount to 4.8! All good.

PD

by EvaH (Jun 21)

Yes i understand.
I meant that the eye odema is a cosmetic side effect of the TKI, its not dangerous nor will it impact your health or eye function in any way.
Im not sure of which scale your doc
Category: Treating CML

Replies: 6

Last updated: 3 July 2022
devenavani on 7 November 2019

Category: Treating CML

Replies: 2

Last updated: 25 June 2022

THC/CBD interaction with Tasigna
by AdrienneBerg (Jun 25)

THC is known mainly for its psychoactive effects, but it also has physical effects. CBD has only a physical effect. That is, it affects the body without changing the state of mind. But we always

by TimJanson (Jan 27)

Observing the effects of CBD and THC on the user, some researchers have continued to mix the two cannabinoids in one product, bridging the gap between CBD and THC and providing additional benefits

by devenavani (Nov 7)

Hello does anybody know if there are any negative interactions with THC/CBD aka cannabis and Tasigna ?
Its widely used by caner patients to help manage nausea /anxiety/ pain etc etc.
i
Category: Treating CML

Replies: 2

Last updated: 25 June 2022
No_Fun_2022 on 17 June 2022

Category: Treating CML

Replies: 12

Last updated: 22 June 2022

BCR-ABL went up at 6 weeks worried
by Kamil (Jun 22)

Thats good news, means you were detected very early. Again, dont worry about the latest bcr result, wait for the 3 month check up and then see how it goes.
Do you know what your Vitamin D levels

by No_Fun_2022 (Jun 21)

My blast was 0.5% at diagnosis when checked during the bone marrow biopsy. In the peripheral blood I don't think they found any..
I just asked to do a PCR at 6 weeks because I wanted to get an

by ColoradoGuy (Jun 21)

If I am understanding your post correctly you have been on TKI for about six weeks. It is worth waiting a month or two to see if you get it moving downwards. I was too started on 100mg

by Kamil (Jun 21)

Hi,
its such a small difference that I wouldn’t worry too much about, it can depend on how many cells were tested and many other factors… Firstly, the tki’s are working as
Category: Treating CML

Replies: 12

Last updated: 22 June 2022
Kamil on 20 June 2022

Category: Treating CML

Replies: 4

Last updated: 21 June 2022

Alcohol and question about platelets
by Kamil (Jun 21)

We are also into nutrition and supplementation and believe that the appropriate nutrition can help with the side effects of the drug and perhaps enhance its effectiveness. We both take

by scuba (Jun 20)

As long as she tolerates Curcumin (i.e. nosebleeds), I am a strong supporter of Curcumin's health benefits (and Selenium) in messing with CML.
There is no doubt, in my mind, she will beat CML.

by Kamil (Jun 20)

Thanks for your reply Scuba, as always very informative. We had our consultation Today and her results are great :) the wbc had actually stabilised and are hovering between 8.7-9.2, platelets

by scuba (Jun 20)

It's quite normal for platelets to drop especially when starting out high during early treatment. Dasatinib is a potent myelosuppression agent, so it is important to monitor blood levels (
Category: Treating CML

Replies: 4

Last updated: 21 June 2022
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