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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
cousineg2 on 17 June 2022

Category: Uncategorised

Replies: -1

Last updated: 17 June 2022

ASCO 2022 - Some Interesting Abstracts About CML

Category: Uncategorised

Replies: -1

Last updated: 17 June 2022
mil on 13 June 2022

Category: Uncategorised

Replies: 3

Last updated: 14 June 2022

Miss dose
by mil (Jun 14)

Hi Alastair and Christine,
Thank you both for your answers. I take Imatinib 400 mg per day, my last bcr abl was ok but i had a little increased result if i compared with my previous one but i am

by Christine R (Jun 14)

You should have an information leaflet in your tablet box that should show what to do if you miss a dose. If you don't then you should be able to find the leaflet online.
Most of the TKIs act in

by AlastairC (Jun 14)

Hi. You don't say which of the CML meds you are taking, or what your latest BCR-ABL result is - would be useful to know
The guidance for imatinib is that if you miss a dose you should take it if

by mil (Jun 13)

Hi guys, hope you all are doing great!
I just want to ask something … Yesterday i forgot to take my pill … i remembered at 1 am that i had to take it, so i took it at that time
Category: Uncategorised

Replies: 3

Last updated: 14 June 2022
maxduke on 12 June 2022

Category: Uncategorised

Replies: 1

Last updated: 13 June 2022

Cardiac issues
by An (Jun 13)

Are you currently on dasatinib?If you are in treaent free remission for some time it may not be due to the drug,though no one knows the long term effects.

by maxduke (Jun 12)

Hello, I am a New member.

in 2009 I was diagnosed with CML and was fortunate enough to be placed on the Spirit II dasatinib trial drug. I was on this drug for 6.5 years, at
Category: Uncategorised

Replies: 1

Last updated: 13 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
cousineg2 on 12 June 2022

Category: Clinical trials

Replies: -1

Last updated: 12 June 2022

UM171 Expansion of Cord Blood Improves Donor Availability and HLA Matching For All Patients, Including Minorities

Category: Clinical trials

Replies: -1

Last updated: 12 June 2022
alexmcpee on 24 May 2022

Category: Uncategorised

Replies: 11

Last updated: 10 June 2022

Latest results - and some positivity for newly diagnosed.
by 17721459 (Jun 10)

Thank you for the information.

by alexmcpee (Jun 4)

Good to here from you Ian! And big congrats on the birth of another baby! Amazing!
Glad you’ve maintained MMR also. It’s a ride for sure: glad that it’s mostly over for you now!

by alexmcpee (Jun 4)

I found this for you
Gastrointestinal Disorders:
Common: acute pancreatitis, abdominal discomfort, abdominal distension, dyspepsia, dysgeusia, flatulence.
Uncommon: gastrointestinal

by ColoradoGuy (May 27)

Congrats on you new addition! Glad to hear you are also trending downwards.
Category: Uncategorised

Replies: 11

Last updated: 10 June 2022