You are here

Forum

beero on 16 July 2021

Category: Blood tests

Replies: 6

Last updated: 7 July 2022

18 months - PCR increase
by JoeP (Jul 7)

If you are consistently getting at least 2 zeros after the decimal after only 18 months I would say you are doing stellar. And that’s on Imatinib? I was 11 years on that and reached .003 once

by beero (Jul 7)

I have the update on this after my latest test couple of days ago.
After the "negative" (under 0.0032) result 6 months ago, I again received a "suspicious" result - 0.0030.
The

by Nimbus2 (Jan 13)

I notice in my own case that I have 10 BCR::ABL1 cells in 39,106 copies of ABL1, i.e. 10/39,106 x 100 x 0.6 [laboratory correction for IS] = 0.0153%
I am still in MR3.
I would need, as I see it, to

by beero (Jan 12)

Hello guys,
I owe you an update on this thread. Just got the message from my doctor and my latest BCR-ABL says undetectable.
However, it doesn't really mean I've got a lower result than last
Category: Blood tests

Replies: 6

Last updated: 7 July 2022
scuba on 31 January 2018

Category: Uncategorised

Replies: 4

Last updated: 6 July 2022

Heart health ... role of vitamin D
by WhitneyWhitaker (Jul 6)

Oh, I didn't even know vitamin D played an important role in heart health. This will come in handy for me in the future. Thank you very much. When I was in the hospital with a heart condition

by minwalles (Dec 15)

I completely agree with you. Vitamin D and other vitamins should be taken to maintain health and immunity, especially for the elderly and people with poor health. I take vitamins regularly, but I

by scuba (Jan 31)

I have read a lot of articles on CoQ10
(http://www.lifeextension.com/Magazine/2008/2/Coenzyme-Q10-And-Cancer/Pag...)
and I do have a bottle of it laying around, but I find myself not taking it

by cmljax (Jan 31)

Hey Scuba - what are your thoughts about taking CoQ10 for heart health as well? Good to see you over on this site.
Category: Uncategorised

Replies: 4

Last updated: 6 July 2022
hannibellemo on 8 June 2022

Category: Uncategorised

Replies: 17

Last updated: 6 July 2022

Peripheral Neuropathy on Tasigna - Redux
by JoeP (Jul 6)

Hannibellemo in response to your question of why I am on 800mg… good question. My doc offered to lower it even switch to another drug but I want to get to CMR for once in my life. I am

by JoeP (Jul 6)

Good luck at the podiatrist tomorrow hannibellemo. Let us know what you find.

by hannibellemo (Jul 5)

Thanks for the update, cmljax. Congratulations on your continuing CMR on the low dose. If it weren't for my pleural effusion experience with Pleurx catheter I'd still be on Sprycel. If you

by cmljax (Jul 4)

I have now been on 20 mg Sprycel for 18 months and have remained PCRU. The neuropathy got better for while then returned though not quite as bad as when I was on 150 mg Tasigna. Earlier
Category: Uncategorised

Replies: 17

Last updated: 6 July 2022
scuba on 28 May 2022

Category: Uncategorised

Replies: 3

Last updated: 6 July 2022

Vitamin D
by scuba (Jul 6)

Too much selenium can have side effects (hair loss is one). So don't overdose.
No more than a couple of Brazil nuts per day or 200 mcg supplement per day.
The benefits of selenium is too great

by Vikram (Jul 6)

Hii .
Brazil nuts (selenium) side effects ?
Hair fall problem... Is true ..? Ya mith...

by scuba (Jul 5)

The important thing about supplements is to know what you are buying, what it is for and to treat a "known" deficiency.
Taking supplements without knowing your personal status, dosing, etc

by scuba (May 28)

A very good video summary on dose needed to maintain healthy vitamin D levels by Dr. Eric Berg

https://mail.google.com/mail/u/1/#inbox/FMfcgzGpGKTtvRLnlJTPLnFjPQRLVfDz...

Note how much D3 is
Category: Uncategorised

Replies: 3

Last updated: 6 July 2022
Deni H on 14 September 2021

Category: Uncategorised

Replies: 12

Last updated: 6 July 2022

Holiday Insurance Advice
by florianloncaric32 (Jul 6)

Thanks to the people in the comments who provide important information on this topic. Finding reliable information about this isn't easy since different data is written everywhere. My wife and I

by Patch (Sep 28)

Hi Deni,
Fantastic news that you are going on holiday have a brilliant time..
I was Diagnosed with CML at the end of August 2018. I was a month away from travelling alone to stay with friends for

by johnw1001 (Sep 26)

Hi,
I have come to this debate late but have contributed to previous discussions on Forum on this topic.
There are some well informed insurers out there who realise that CML is not the death

by Richard42 (Sep 23)

Actually the EHIC card is one of the few things which has not changed. If you have one, it’s still valid. On renewal, you apply for a GHIC card now in the UK - which does the same
Category: Uncategorised

Replies: 12

Last updated: 6 July 2022
TJ.B on 20 October 2019

Category: Uncategorised

Replies: 15

Last updated: 5 July 2022

Nilotinib user suffering with anxiety
by JoeP (Jul 5)

You know now that I think of it I too have been very anxious lately on 800mg per day nilotinib. I am in the middle of a move and job change so I associated it to that but in general I am anxious,

by JoeP (Jul 5)

I had many side effects while on Imatinib including stomach and depression issues. Just switched to nilotinib and have a whole new host of issues plus the lingering withdrawal of imatinib. Hang in

by devenavani (Nov 7)

does anybody know if cannabis would be appropriate to take to help with the nausia anxiety and boan pain associated with tasigna ?

by mamodei (Oct 27)

I've a long history of gut problems and the dasatinib has been okay. A bit of nausea, but low level and can be ignored.
Nilotinib was much more of a problem for my digestion. I
Category: Uncategorised

Replies: 15

Last updated: 5 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
Kamil on 7 June 2022

Category: Side effects

Replies: 1

Last updated: 5 July 2022

Rash on Dasatinib
by SS86 (Jul 5)

Hi,
My wife experienced the same with dasatinib. It happened twice only then we were able to figure out it was due to the drug.
Speak to your doctor and try a lower dose.

by Kamil (Jun 7)

Hello,
My partner has been on dasatinib for two weeks now and we noticed a rash that appeared on Friday. For the first week she was also taking allopurinol and stopped on Wednesday.
The first
Category: Side effects

Replies: 1

Last updated: 5 July 2022
Evie on 3 July 2022

Category: Side effects

Replies: 5

Last updated: 4 July 2022

Swollen eyes on Imatinib
by Evie (Jul 4)

Hi Janet
thanks for your response. I did wonder if this could be long term as like you I have also tried face roller, diet and still no luck. I will look into the eyelid tape and hopefully

by Janet Treble (Jul 4)

Hi Evie
I was diagnosed with CML in November 2020 and like you have had the same problem with my eyes, swollen eyelids and under eyes.
Sadly its a side effect of taking Imatinib as unsupported

by JoeP (Jul 4)

Swelling around the eyes is quite common. Diet and lifestyle adjustments may help to mitigate the severity. I can tell you I had swelling for years and then when I switched TKIs it almost went all

by Evie (Jul 4)

Hi Pojo
Thank you for your reply that was really helpful. I’m hoping the swelling around my eyes will get better in time but will look into how I could help reduce it by diet.
Category: Side effects

Replies: 5

Last updated: 4 July 2022
Rae_B on 14 June 2022

Category: Side effects

Replies: 2

Last updated: 3 July 2022

Starting dose for Tasigna/Nilotinib
by JoeP (Jul 3)

I was moved to Nilotinib April 12th after 11 years on Imatinib. The imatinib started to fail. I am on 800mg and I can tell you the first 3 weeks was hell. I even dropped to 600 for a day even 400. I

by Christine R (Jun 16)

Although my diagnosis was along time ago and in the early days of both imatinib and nilotinib. I was moved over to Nilotinib in a similar situation to you and was prescribed 800mg of Nilotinib but

by Rae_B (Jun 14)

Hi All
I saw my doctor today and I'm switching from 400mg of Imatinib (which has got me to around 2% in 14 months) I'm resistant to Imatinib and need to switch to Nilotinib.
Category: Side effects

Replies: 2

Last updated: 3 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
Nimbus2 on 2 July 2022

Category: Uncategorised

Replies: 0

Last updated: 2 July 2022

Dasatinib. Any unexpected improvement in health?
by Nimbus2 (Jul 2)

I wonder whether anyone taking dasatinib has experienced any unexpected improvement in any conditions.
I notice the following:

very good diabetic control
nocturia improving by leaps and bound
Category: Uncategorised

Replies: 0

Last updated: 2 July 2022
KeriF on 7 June 2022

Category: Reproductive health

Replies: 3

Last updated: 2 July 2022

Nervous about TFR
by Lavinia (Jul 2)

Hi Kerri,
Wishing you all the best! I am in the same boat except I will be coming off Dasatinib after 2 years, so I won’t have reached undetectable status yet. I am 40 this year so it’s

by scuba (Jun 11)

I know a CML patient personally who was in your situation and she was on 50 mg dasatinib and near undetectable. She stopped therapy and became pregnant (with twins!). Within a few months her CML

by AlastairC (Jun 10)

I can't offer much practical support - I'm male and on imatinib so no relevant experience.
Just wanted to say good luck, and you can certainly be confident that if your CML counts start

by KeriF (Jun 7)

Hi everyone,
Today was my last dose of dasatinib and I’ll be attempting TFR to try to get pregnant. I’m 33 years old and was diagnosed at 29. Here are my numbers:
1/2019 104% ->
Category: Reproductive health

Replies: 3

Last updated: 2 July 2022
terris on 19 June 2022

Category: About CML

Replies: 2

Last updated: 1 July 2022

Moving my CML treatment from HK to UK
by terris (Jul 1)

Hi, you are kind to reply me.
Yes. I can imagine that Stop TKI is heavy load on mentally that os why becasue of this I can not plan my immigration to UK now. this will create more uncertainity for

by EvaH (Jun 19)

Hi Terris
Although i cant help you very much on the UK health system, i have moved many countries during time since my diagnosis in 2016 and ive never had an issue.
I have private worldwide

by terris (Jun 19)

Dear all,
I am CML Patient from Hong Kong. I may move to UK in coming 1 - 2 years. May I know if all cities in UK can consult the CML cases? Should I go to consult GP and GP refer my case to
Category: About CML

Replies: 2

Last updated: 1 July 2022
sb22 on 10 May 2022

Category: Uncategorised

Replies: 11

Last updated: 1 July 2022

bosutinib
by onekayaker (Jul 1)

My hair was thinning till I started minoxidil 5%. Post menopausal women can use the 5%. I also went to a sulfate-free shampoo & conditioner. I use the L’oreal because it’s easy

by onekayaker (Jul 1)

My hair was thinning till I started minoxidil 5%. Post menopausal women can use the 5%. I also went to a sulfate-free shampoo & conditioner. I use the L’oreal because it’s easy

by onekayaker (Jul 1)

I was eased into Bosulif after rejecting sprycel. 100mg….209mg….300mg 2 week between each increase . I responded to the 300mg so well they never went to 400mg. I never had

by DavidS (Jun 7)

Hi.. Yes been on it for about a year now.. started on 500g a day and still on it, moved from Imatinib as that was going nowhere fast. The trots in the first few weeks were entertaining but now I may
Category: Uncategorised

Replies: 11

Last updated: 1 July 2022
Lucky Utubor on 9 March 2019

Category: Uncategorised

Replies: 8

Last updated: 30 June 2022

Marijuana/interaction
by onekayaker (Jun 30)

I asked my oncologist and she said it would not affect the CML or treatment.

by LoganLam (Jun 29)

Medical marijuana is usually derived from high CBD varieties of cannabis. Since the 1980s, there have been reports of anticonvulsant, anti-inflammatory, and antispasmodic properties of CBD. Still,

by sandy craine (Jun 16)

I can't see why marijuana/cannabis would interact negatively with TKI's - at least no more than alcohol - although the liver is rather stressed when processing alcohol and pharmaceuticals in

by Tielsen (Jun 14)

I think most of us vape. Let's agree on something. Vaping is way less harmful than smoking for all of us. Even second-hand smoke isn't that bad for our health. However, I think we should all
Category: Uncategorised

Replies: 8

Last updated: 30 June 2022
kali on 23 March 2019

Category: Uncategorised

Replies: 73

Last updated: 30 June 2022

Update on Plueral Effusion and break from Sprycel
by kali (Jun 30)

So happy for you!! This is great news.

by S Davis (Jun 30)

Many thanks to all who have shared their personal experiences with Sprycel and pleural effusions through this venue.
To provide an update on my situation, I resumed Sprycel in late March 2022

by hannibellemo (Mar 8)

Susan, I thought I would chime in. I started Sprycel in 2009 at 100mg. In Feb. 2012 I developed my first PE on the right side only. I stopped Sprycel, not as quickly as I should have, and it got

by kali (Mar 7)

Hi Hannibellemo,
Thanks for the information you shared. Also, glad to hear about the progress you have made. Hope things continue to go well!
Category: Uncategorised

Replies: 73

Last updated: 30 June 2022
JoeP on 26 June 2022

Category: Side effects

Replies: 6

Last updated: 28 June 2022

Peanut Butter stool on Tasigna
by JoeP (Jun 28)

Interesting. I never would have guessed there was a difference of how it leaves the body but it makes sense. Thanks Hanni.

by hannibellemo (Jun 28)

Pojo, I have the same irritating problem and I'm on less than 1/2 your dose. I take mine at 10am and 9:30pm. I think one issue is that nilotinib is excreted in feces and not through the kidneys

by JoeP (Jun 27)

Ok I will give it a try. Thanks. I’ll let you know how it works.

by snowman 35 (Jun 27)

Eg eat your breakfast at 8 in the morning take your pill at 12 in noon after 1 hour I think you can eat your lunch .Then you can eat your dinner at about 9:30 and take your pill at 12 in midnight.I
Category: Side effects

Replies: 6

Last updated: 28 June 2022
snowman 35 on 25 June 2022

Category: Blood tests

Replies: 6

Last updated: 26 June 2022

Creatinine levels
by snowman 35 (Jun 26)

By drinking more water levels went down!sometimes close to normal range sometimes higher(mostly in hot days)but definitely lower than if was drinking less....

by snowman 35 (Jun 26)

I am not on imadinib....all the tests and the ultrasound was perfectly normal!

by wshi2001 (Jun 26)

By the way, its got nothing to do with drinking more water. My doctor said the same thing, drink more water, I tried, and did not make any difference, it's the drug's side effect.

by wshi2001 (Jun 26)

hi, when I was on Imatinib, I had the same problem. When I changed to Tasigna, it settled down. I read some article suggesting there was cases that imatinib causing kidney damages
Category: Blood tests

Replies: 6

Last updated: 26 June 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