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AlastairC on 23 March 2018

Category: Uncategorised

Replies: 1

Last updated: 24 March 2018

Amazon Smile or Easyfundraising?
by David Fitz (Mar 24)

Hi Alastair,
Really either is great! We've just implemented the Amazon Smile option as it doesn't require any additional sign up, and you don't need to remember to begin your purchase through

by AlastairC (Mar 23)

Hi. I have just read the Amazon Smile link on the site. I have for some years connected to Amazon and other e-commerce sites through easyfundraising.com where I have CML SG set up as my chosen
Category: Uncategorised

Replies: 1

Last updated: 24 March 2018
PTeixeira on 22 March 2018

Category: Treating CML

Replies: 5

Last updated: 23 March 2018

My story
by cmljax (Mar 23)

If your PCR is stable at MMR or better, dose reduction should definitely be on the table with your doc.

by scuba (Mar 22)

PT - You might be having a deep deficiency in Magnesium given the leg pain. Full dose Sprycel can easily cause deficiency to occur.
Consider taking 400 mg (split morning and just before sleep) of

by PTeixeira (Mar 22)

Hello... I’m on 100mg. It’s just ALOT OF LEG PAIN. makes it hard to walk and do thing... I actually tried stopping my Chemo for some relief but my cancer came back a month later so I absolutely had

by kat73 (Mar 22)

What are your side effects?
Category: Treating CML

Replies: 5

Last updated: 23 March 2018
shayner on 22 March 2018

Category: Uncategorised

Replies: 10

Last updated: 23 March 2018

Treatment around the country
by shayner (Mar 23)

That’s really true David, thanks, I can sometimes over think it all! It’s just when you are making a big lifestyle change and it’s non reversible you want to cover all the possibilities - I

by David Fitz (Mar 23)

It is indeed possible that the excipients (fancy word for the non-active ingredients) in the generics could cause some people problems. But also people sometimes get health issues and are quick to

by shayner (Mar 23)

Thank you Alistair, if that’s all I have to worry about I will think myself very lucky! Medicines supposed to taste bad, right?!

by AlastairC (Mar 23)

Hi, I moved to the Wockhardt generic on 400mg about 18 months ago and had no adverse impacts compared to the Novartis Glivec. Went down to 200mg 6 months ago. Maybe I am just lucky. The one thing I
Category: Uncategorised

Replies: 10

Last updated: 23 March 2018
Justine on 11 March 2018

Category: About CML

Replies: 5

Last updated: 21 March 2018

Bloody nose
by Justine (Mar 21)

Oh Tony Romo, I believe you have a good heart as well as a good sense of humor. Thanks for making me laugh.

by Romo (Mar 19)

I got a bloody nose standing up one time.
I stood up in an Irish pub and asked why
ST. Patrick didn’t get rid of all the snakes.
Of course I was drunk on green beer and
claming I was

by Justine (Mar 14)

Thank you both.

by campanula (Mar 13)

Hi Justine - I had this problem about a year ago, one year after diagnosis. It lasted about a month - really debilitating, as they were gushers. I believe it was caused by a
Category: About CML

Replies: 5

Last updated: 21 March 2018
JacqJohn on 19 March 2018

Category: Treating CML

Replies: 4

Last updated: 21 March 2018

Edema with Imatinib
by Romo (Mar 20)

TKI’s shrink capillaries. Drinking more water will not mitigate this.
In some organs like eyeball and kidneys it’s the capillaries that are the life
and the hydration. Kidneys are full of

by kat73 (Mar 20)

I know there are many who swear by slugging down liters and liters of water every day, but I'm not one of them. I've had too many docs wave their hands at me and say the whole 64 oz per day

by JacqJohn (Mar 20)

Hi Kat,
Thanks for the reply. Yes I have those signature droopy eyelids. For legs is not everytime I see it.
i will try to reduce salt intake. Just wonder if drinking much more water (at least 2

by kat73 (Mar 19)

Unfortunately, this is a signature side effect for Gleevec. There is even a term, "Gleevec Eyes." I have never found anything to help, although it can be made worse by a high salt intake
Category: Treating CML

Replies: 4

Last updated: 21 March 2018
scuba on 20 March 2018

Category: Treating CML

Replies: 0

Last updated: 20 March 2018

Decisions in the Clinic: Treating Patients With Chronic Myeloid Leumeia
by scuba (Mar 20)

Decisions in the Clinic: Treating Patients With Chronic Myeloid Leumeia
https://www.cancertherapyadvisor.com/michael-deininger-md-phd/section/8095/
This is a nice summary of practical
Category: Treating CML

Replies: 0

Last updated: 20 March 2018
JohnFromChicago on 28 February 2018

Category: Uncategorised

Replies: 13

Last updated: 20 March 2018

Dose Reduction 5 Week PCR Test Result (.01 to .04)
by scuba (Mar 20)

I have decided that if I test "undetected" again in September (I am on a six month testing schedule) - I will stop Sprcyel and "test" my natural ability to remain in full remission (i.e.

by cmljax (Mar 20)

Happy for you Scuba - keep it up

by JohnFromChicago (Mar 20)

Congrats on another "undetected"!!! No Sprycel sounds like my favorite kind of Sprycel.

by scuba (Mar 19)

John - Stay the course. You are doing fine. As long as your measurements are within one log (factor of 10), you are within the noise of the test.
I know it's difficult psychologically - but then
Category: Uncategorised

Replies: 13

Last updated: 20 March 2018
cmljax on 17 March 2018

Category: Uncategorised

Replies: 3

Last updated: 20 March 2018

P190 testing
by cmljax (Mar 20)

Thanks for the response and encouraging words Sandy. I know I overreacted, but I think it was in part due to my onc not providing this kind of feedback even though I know it form being part of

by Romo (Mar 18)

They do the same for me. I think it’s standard for the ticket.
Your oncologist would need to order additional mutation
testing before the lab will do it. This order would be
called for if

by sandy craine (Mar 18)

From what I have read, only 1% of CP CML patients have p190 alone. Given you have always been negative for p190 so I would say this may well be over-testing/over worrying. Those with this

by cmljax (Mar 17)

My PCR regimen has always included testing for both p210 and p190. Just curious if anyone else is also always tested for both of these translocations. My p190 test has always been negative.
Category: Uncategorised

Replies: 3

Last updated: 20 March 2018
Liamsdad on 6 March 2018

Category: Treating CML

Replies: 3

Last updated: 16 March 2018

New Drug that supposedly kills the stem cells
by Romo (Mar 16)

Here is another one.
https://www.cancertherapyadvisor.com/chronic-myeloid-leukemia/chronic-le...
I sure hope they cure CML before the End Times.
I don't want to die before I'm cured of cancer.
Romo

by Romo (Mar 9)

Seems to be gaining a little more traction.
https://www.youtube.com/watch?v=ZMdKQcq9s5E

Romo

by RC Kirk (Mar 6)

Hopefully it will work as well in us as it does in the mice! I wonder how long before they know if this will work and then how long until it's available to us?

by Liamsdad (Mar 6)

In the 2 years since I've been diagnosed I've seen a few of these types of articles but this looks promising!
https://www.businesswire.com/news/home/20180305005966/en/City-Hope-Study...
Category: Treating CML

Replies: 3

Last updated: 16 March 2018
Shamshad Ali on 14 March 2018

Category: Side effects

Replies: 5

Last updated: 16 March 2018

Married
by Shamshad Ali (Mar 16)

Thank you so much dear romo

by Romo (Mar 15)

Not only can you get married and have kids you can play
professional Hockey. Or perhaps football. Or Cricket.
Or chess, or be a Doctor and cure the darn thing!
No limits.
http://www.

by David Fitz (Mar 15)

Then I think you have nothing to worry about in terms of marriage or managing to father children.
David.

by Shamshad Ali (Mar 15)

8 years ago I was diagnosed with cancer

And i am taking 400mg imatinib on daily basis
Category: Side effects

Replies: 5

Last updated: 16 March 2018
Alisa Gilliam on 15 March 2018

Category: Side effects

Replies: 2

Last updated: 15 March 2018

Neutropenia after 1 month on 400 mg imatinib
by kat73 (Mar 15)

Alisa - Very often a drug break will enable a successful re-trial, even at the same dose. Sometimes it takes several tries. Lowering the dose is an option, too. I don't have

by Romo (Mar 15)

What are the chances that you would be who you are...

Romo

by Alisa Gilliam (Mar 15)

Doctor took me off imatinib for 2 weeks after my neutrophils dropped to 0.0. Now that they are back to normal he told me to resume treatment at same dosage. What are the chances of becoming
Category: Side effects

Replies: 2

Last updated: 15 March 2018
Dinesh Reddy on 15 March 2018

Category: Treating CML

Replies: 7

Last updated: 15 March 2018

P230 (E19A2) CML
by David Fitz (Mar 15)

Just one word of warning ... pomegranate juice may interact with an enzyme (CYP3A4) that is important in breaking down nilotinib. Whilst a few pomegranate seeds in a salad isn't going to cause

by Dinesh Reddy (Mar 15)

Hello scuba ....
First of all lemme thank u for the reply, I was also doing some research on internet and found that Nilotinib is the medicine which got good response in P230 CML

by Dinesh Reddy (Mar 15)

Hello maaam ellie thanks for the reply ..... ya it’s kind of rear so was bit worried and thought to ask the expert openion over here .... & really thanks for the reply .... tomorrow is the

by scuba (Mar 15)

Hi Ellie,
From Dinesh's post:
"...a micro transcript BCR-ABL was detected in P230( E19A2)"
That is the key phrase. BCR-ABL WAS detected. They didn't know to look for it which is why it didn't show
Category: Treating CML

Replies: 7

Last updated: 15 March 2018
Saraberkenkotter on 10 March 2018

Category: Side effects

Replies: 3

Last updated: 13 March 2018

Awful headaches
by Saraberkenkotter (Mar 13)

You are now on tasigna? Were on sprycel before?

by davewell (Mar 12)

Hello,
what time do you usually take Sprycell? What is your dosage? How long have you been on it?
I am asking because for me (80mg) the side effects "wave" strikes more or less 4-6 hours after

by Harsh (Mar 11)

Yeah,mild headache like an hangover after waking up.i have gained around 16 pounds.I also have pain in my left leg just below the shins.I am on tasigna for 15 months and the side effects had reduced

by Saraberkenkotter (Mar 10)

Help!!

I am taking sprycel (desatinb) and have only, uuntil recently, had minimal side effects such as water retention and skin rash. But lately it has been getting so much worse! I wake up
Category: Side effects

Replies: 3

Last updated: 13 March 2018
RodM on 4 March 2012

Category: Uncategorised

Replies: 11

Last updated: 12 March 2018

Licenses and Medicals
by Anonymous (Mar 12)

Hi guys,
I wanted to be a pilot and basing from your replies i could still be. Do i need to be in molecular remission in order to do so?

by Anonymous (Mar 12)

Hi guys,
I wanted to be a pilot and basing from your replies i could still be. Do i need to be in molecular remission in order to do so?

by RodM (Jul 25)

Yup - left a note on another thread, but yes, I did a week of 2 dives/day down to about 25m, and then 2 weeks at up to 4 dives/day on Nitrox, max 29m, over 4 hours under a day and no issues at all.

by David Fitz (Jul 23)

Hi Rod,
Have you been SCUBA diving on dasatinib yet? I went a month or so ago - just for a pretty easy day of diving, but didn't want to push it on the first time back in the water. All went pretty
Category: Uncategorised

Replies: 11

Last updated: 12 March 2018
Saraberkenkotter on 10 March 2018

Category: Side effects

Replies: 3

Last updated: 11 March 2018

Awful headaches
by hannibellemo (Mar 11)

Hi, Sara!
You are having a time of it aren't you? I've been taking Sprycel since 2009 and while I hated it at first, after 6 months or so I started feeling so much better. I don't think what you are

by Romo (Mar 10)

Water retention and gaining 20 pounds, could mean something.
These things coupled with shortness of breath may mean
that you are having toxicity to the dasitnib. I hope you are seeing
a

by LouiseS (Mar 10)

Hi Sara

My husband was only diagnosed last Sept and has been on Sprycel since then at 100mg. There are others on this site way more experienced to offer advice than me but from what I have

by Saraberkenkotter (Mar 10)

Help!!

I am taking sprycel (desatinb) and have only, uuntil recently, had minimal side effects such as water retention and skin rash. But lately it has been getting so much worse! I wake up
Category: Side effects

Replies: 3

Last updated: 11 March 2018
EvaH on 10 March 2018

Category: Drug-food interactions

Replies: 1

Last updated: 11 March 2018

Tki's And herbal medicine
by sandy craine (Mar 11)

Hi Eva,
There are a lot of people suffering this at the moment - at least in the UK. I work in the retail environment so I am exposed daily to the flu virus etc. However, this year I have escaped

by EvaH (Mar 10)

Hi all,
A friend suggested kaloba for my chesty cough. Can't seem to find any info online about interaction with Imatanib.
Generally , does anyone know of a reference on tki's and herbal meds? ( In
Category: Drug-food interactions

Replies: 1

Last updated: 11 March 2018
Watersprite3 on 10 March 2018

Category: Uncategorised

Replies: 1

Last updated: 11 March 2018

New to forum
by sandy craine (Mar 11)

Hello Eileen and welcome,
Looks like you are within ELNet recommendations for optimal response to TKI therapy, and NCCN (US) guidelines. Your October and January PCR results show you are

by Watersprite3 (Mar 10)

I am new to this forum, and have jumped over the pond from the US site. Two years ago, I was diagnosed with colon cancer and went through surgery followed by chemotherapy. I have a few
Category: Uncategorised

Replies: 1

Last updated: 11 March 2018
scuba on 30 January 2018

Category: Uncategorised

Replies: 68

Last updated: 10 March 2018

Coming over from LLS CML group in the U.S.
by Romo (Mar 10)

After thought...
I have friends that put toothpaste in their coffee and call it brushing their teeth.
Just trying to have some fun.

Romo

by Romo (Mar 10)

I hope our English host don’t mind us Americans
invading their CML domain.
We promise not to drink the tea. We are coffee people.
Lotsa cream. lotsa sugar and anything else you have.
Thank

by snowboots (Mar 10)

Hi Scuba and All! So glad to see you here. I am also just coming over from the US LLS site. So dissappointed in their dumping of our discussion group. I am already liking this one! Hoping to

by scuba (Mar 9)

I'm not so sure David about equal members ... according to George Orwell, that famous English novelist, didn't he say that some members were more equal than others?
Category: Uncategorised

Replies: 68

Last updated: 10 March 2018
LouiseS on 8 March 2018

Category: Uncategorised

Replies: 4

Last updated: 9 March 2018

Antihistamine
by Romo (Mar 9)

Many allergies in the eye are caused by allergens trapped in the eye lashes
during the day and migrate to the eye orb during the day or night.
Eye lashes are a filter to protect the eye.
An

by David Fitz (Mar 8)

Hi Louise,
I often get dry eyes - not CML related, just always have. I have recently found carmellose sodium drops to be great at relieving that dry feeling. Really soothing.
https://

by LouiseS (Mar 8)

Thanks so much for such a speedy reply. I will get some today and keep you posted.

by scuba (Mar 8)

It's almost certainly hay fever.
Quercetin is terrific at countering itchy swollen eyes. It is a natural anti-histamine
https://www.healthline.com/health/allergies/best-natural-antihistamines#1
When
Category: Uncategorised

Replies: 4

Last updated: 9 March 2018
laxmikant on 2 March 2018

Category: Blood tests

Replies: 6

Last updated: 8 March 2018

A question about PCR result interpretation
by laxmikant (Mar 8)

Nice to hear the same Romo. Thanks

by laxmikant (Mar 8)

Thanks and I wish speedy response for your husband too. Best

by laxmikant (Mar 8)

Thanks AlastairC, that was very reassuring. Yes I suffered from a few side effects initially like muscle cramps and digestive disturbances etc. But after six months they disappeared. I hope they do

by T and M (Mar 7)

Hi Laxmikant. Looks like your result is really fantastic. My husband is on Imatinib and started at 90% myeloid cells and by 4 months was 6.06%. Sometimes too good of a response
Category: Blood tests

Replies: 6

Last updated: 8 March 2018