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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
Kamil on 23 June 2022

Category: Uncategorised

Replies: 0

Last updated: 23 June 2022

Albumin serum elevated
by Kamil (Jun 23)

Hi,
I hope everyone is doing well.
we just received our latest results everything is well , everything is within the normal ranges. Platelets had somewhat stabilised, haemoglobin was slightly going
Category: Uncategorised

Replies: 0

Last updated: 23 June 2022
Vijay Kumar Verma on 24 May 2022

Category: Uncategorised

Replies: 4

Last updated: 23 June 2022

Gallbladder removed
by Vijay Kumar Verma (Jun 23)

Life is better now.

by DavidS (Jun 7)

Hi… also had mine removed about 8 years ago now, keyhole and in and out in a day. Considering the pain I went through when the stones played up I was very happy to get it sorted… you

by Vijay Kumar Verma (May 26)

Thanks a lot

by Christine R (May 25)

Had mine removed 20 years ago and it was the easiest operation i have had. Mine was keyhole and recovery was quick. I have never had a problem since but other people have. This was a few years
Category: Uncategorised

Replies: 4

Last updated: 23 June 2022
Vijay Kumar Verma on 24 May 2022

Category: Uncategorised

Replies: 2

Last updated: 23 June 2022

Gallbladder removed
by Vijay Kumar Verma (Jun 23)

I'm 36 years old.

Life is better after gallbladder removal.

Liver will adjust according to the needs.

Do I need to adjust my fat intake or my body will adjust?

by Richard (Jun 22)

I had my gall-bladder removed at the ripe old age of 23, which was 50 years ago. I can honestly say that it made no difference whatsoever to my life. I have developed a blood condition of LOW lipids

by Vijay Kumar Verma (May 24)

Today I get my gallbladder removed due to stone and unbearable pain.

Any input from our fellow cmlers will appreciated from the bottom of my heart about future complications.

Wishing you
Category: Uncategorised

Replies: 2

Last updated: 23 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
SueAngel on 22 June 2022

Category: Side effects

Replies: 0

Last updated: 22 June 2022

Sprycel & Cycle
by SueAngel (Jun 22)

Hi,
I was diagnosed over a year now and been on Sprycel. Started at 100 mg and later went to 50. I am 38. Since starting Sprycel I have noticed that my menstrual cycle changed significantly.
Category: Side effects

Replies: 0

Last updated: 22 June 2022
Lisa70 on 10 June 2022

Category: Uncategorised

Replies: 5

Last updated: 22 June 2022

Newly Diagnosed
by onekayaker (Jun 22)

Hi Lisa...Patient at MD Anderson, DX june 2018 with random bloodwork & wbc 48k. Was eased into Bosulif 100mg....200mg then 300mg in 2 week increments. Never put on the recommended 400mg

by SueAngel (Jun 18)

Hi Lisa,
As someone already mentioned this is a great forum. I strongly encourage you to take advantage of all the support that’s out there ... I know I did and it truly made a difference. I

by Kamil (Jun 10)

Hi Lisa,
This is a great forum, with many knowledgeable and experienced people :) I hope you react well to your TKI and achieve great results. Be careful when doing your research as many information

by Lisa70 (Jun 10)

Thank you Kirk
Category: Uncategorised

Replies: 5

Last updated: 22 June 2022