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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
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
vonnie on 11 June 2022

Category: Uncategorised

Replies: 4

Last updated: 20 June 2022

Diarrhea
by vonnie (Jun 20)

Thanks very much for your reply
Vonnie

by Crfharris (Jun 20)

I have found that taking a probiotic daily has made a huge difference with fewer bouts of diarrhea. When I do have it, Imodium works for me.
Good luck!

by vonnie (Jun 13)

Thank you again John for your prompt reply I will give this advice consideration
Vonnie

by johnw1001 (Jun 13)

I was advised to use Normacol which is a regulariser of the digestive/colon system and helps to form more regular stools-sprinkle a sachet or two on cereal in the mornings.An alternative natural
Category: Uncategorised

Replies: 4

Last updated: 20 June 2022
JoeP on 18 June 2022

Category: Drug-food interactions

Replies: 3

Last updated: 20 June 2022

Dry eyes and gout on Tasigna
by Tanya (Jun 20)

Yes, it's inevitable with all the medicines. They do their job for the cost.
In my first days with 600mg Tasigna per day I was getting mad and desperate.
Surprisingly the advice of my insurance

by JoeP (Jun 20)

Thanks Tanya I will follow your lead. Good advice. Been dealing with imatinib side effects for 11 years but the transition to nilotinib has brought a whole host of new affects. And I think my body

by Tanya (Jun 19)

Hi Pojo
First weeks were very challenging with various side effects.
From another hand I can see that as not Tasigna fault but a real battle inside of my body: between bad sells who won't give up

by JoeP (Jun 18)

I am new to Tasigna, has anyone had issues with dry eyes and gout?
Category: Drug-food interactions

Replies: 3

Last updated: 20 June 2022
Job Guerra on 13 February 2019

Category: Drug-drug interactions

Replies: 7

Last updated: 20 June 2022

Splitting/Cutting Pills In Half?
by JoeP (Jun 20)

When I was splitting my imatinib I used a scissor style pill cutter. It was the only type that didn’t mangle the pill. I don’t know about Sprycel but I would suggest you watch your

by RC Kirk (Jun 16)

Yes, it's not a problem.

by Rayyana123 (Jun 14)

If I cut my pill in half will I be able to take the other half the next day?

by Rayyana123 (Jun 14)

Do you think the other half will be fine the next day?
Category: Drug-drug interactions

Replies: 7

Last updated: 20 June 2022
Rayyana123 on 14 June 2022

Category: Uncategorised

Replies: 7

Last updated: 19 June 2022

NEWLY DIAGNOSE
by JoeP (Jun 19)

EvaH is right, Try to stick to the prescribed regimen. Remember these drugs are highly scrutinized by lengthy trials. Yes the initial side affects can smack you to the floor but most go away

by SueAngel (Jun 18)

Hi Rayyana123
I completely understand where you are coming from. I was just as anxious at starting at 100 mg of Sprycel. Nevertheless I took a chance and started at that dosage. I experienced

by Rayyana123 (Jun 14)

Thank you I decided to take the 100 mg , my doctor said I could take it every other day to see if that works which would equal 50 mg

by Kamil (Jun 14)

Its becoming a more common practice in the U.S to start patients on a lower dosage, but not so common in Europe. The reply i recieved when enquiring about a lower dosage
“we will not routinely
Category: Uncategorised

Replies: 7

Last updated: 19 June 2022
cousineg2 on 18 June 2022

Category: About CML

Replies: -1

Last updated: 18 June 2022

EHA 2022 - Some Interesting Abstracts About CML

Category: About CML

Replies: -1

Last updated: 18 June 2022
Vikram on 14 June 2022

Category: Uncategorised

Replies: 2

Last updated: 18 June 2022

cure cancer
by SueAngel (Jun 18)

Thank you Vikram. I didn’t not know that there was a small trial. I looked it up because you mentioned it. I too hope CML and all cancers can be fully cured. While taking a pill

by EvaH (Jun 14)

Vikram ... for the love of all that's holy... CML is as cured as its going to get !!
TKIs were specifically developed to turn a 100% fatal disease with an average life expectancy of 5 yrs to

by Vikram (Jun 14)

rectal cancer cure in 18 people.
i hope one day CML cancer also cure.
Figger cross..
A trial on 18 colorectal cancer patients in the US found that cancer could be treated without chemotherapy or
Category: Uncategorised

Replies: 2

Last updated: 18 June 2022