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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
Carolinemb on 8 March 2018

Category: Drug-food interactions

Replies: 1

Last updated: 8 March 2018

Vitamin supplements on TKIs
by scuba (Mar 8)

Hi Caroline,
It's generally safe to take vitamins and minerals with TKI's, but usually if you have a deficiency that needs to be corrected. Herbs are more case by case as you noted with St. John's

by Carolinemb (Mar 8)

Hi everyone,
I’m a bit confused as to what vitamin supplements we are allowed to take on TKIs? (I’m on imatinib)
There seems to be a lot of conflicting info out there, I know weve definitely
Category: Drug-food interactions

Replies: 1

Last updated: 8 March 2018
MartinZA on 6 March 2018

Category: Treating CML

Replies: 3

Last updated: 8 March 2018

Hope for those with slow responses
by Lucas (Mar 8)

Amazing, Martin!!! I'm really glad to read good news! I know that your journey wasn't easy (just like mine). If i were you, i would wait for the next pcr to change to imatinib, but i think you'll be

by JohnFromChicago (Mar 7)

Wow I almost have the exact same response rate. Actually yours is the most similar I have ever seen in 2 years of being on the CML Forums (here and LLS)! I agree that even turtles will do well

by kat73 (Mar 6)

Great post. My schedule could be a duplicate of yours. The difference is that in my early months I wasn't made aware of the Guidelines (US or European) and instead my onc just kept

by MartinZA (Mar 6)

Hi everyone
This is just a posting that I would like to make to provide some hope for people who have sub-optimal / slow responses to the TKIs and who miss the milestones. I am writing this
Category: Treating CML

Replies: 3

Last updated: 8 March 2018
Carole on 6 March 2018

Category: Uncategorised

Replies: 7

Last updated: 7 March 2018

Husband just been diagnosed
by T and M (Mar 7)

Carole, welcome and thank you for sharing your journey. I am in the same boat with my husband Tim. He was diagnosed September 2017. We are 5 months into the journey and you will

by LouiseS (Mar 6)

Carole we are now getting my husband’s blood results back in advance of meeting with the doctor. That allows me to do my googling , ask questions here etc before we meet with him.
We found it

by Carole (Mar 6)

Thank you for replying. I’m glad that your husband is responding well to treatment. I intend to go to every appointment with my husband so that I can understand everything that’s going on with him

by Carole (Mar 6)

Thank you for responding. I’m still trying to get to grips with all the terminology and everything about CML but I’m hoping that if there’s anything I find that I’m unsure of I will be able to find
Category: Uncategorised

Replies: 7

Last updated: 7 March 2018
Isla D on 6 March 2018

Category: Uncategorised

Replies: 4

Last updated: 7 March 2018

Unable to send PMs ... any hints?
by Isla D (Mar 7)

Thanks everyone! Thanks David!

by David Fitz (Mar 6)

Must be my mistake. Perhaps that option is only available to the forum administrators - it shows up for me so I thought it was there for everyone.
Let me look into it and see if we can make that

by scuba (Mar 6)

Same here ... I can't see any "contact" option to send a private message.

by Sandrea (Mar 6)

Isla D, I can't see any 'contact' option too, that's what I see when I click your name: Isla.jpg
Category: Uncategorised

Replies: 4

Last updated: 7 March 2018
Sligo Jo on 21 February 2018

Category: Uncategorised

Replies: 15

Last updated: 8 March 2018

Newly registered and saying hello.
by RC Kirk (Mar 6)

Hi David,
I'm not seeing a contact button when I go to your profile. Here's what I'm seeing:

logo
    Home
    Forum
    About CML

by Sligo Jo (Mar 4)

Thanks David.

by David Fitz (Mar 4)

If you want to send someone a private message, you can click on their name beside a forum post, then on the next page you can press "contact" and that will allow you to send a private message.
David

by Sligo Jo (Mar 4)

Hello again and thanks for the recent replies. It is starting to feel like a much smaller world now and your good wishes are very much appreciated.

Liz I am not sure that there is a pm
Category: Uncategorised

Replies: 15

Last updated: 8 March 2018
JohnFromChicago on 3 March 2018

Category: Uncategorised

Replies: 14

Last updated: 18 July 2018

Curcumin the Nitty Gritty
by RC Kirk (Mar 6)

Thanks for the info!

by AnnieS (Mar 6)

The capsules are size 00. The ratio is 1 x tsp turmeric to 1/8th tsp pepper. I buy empty capsules from eBay. I am not saying that this way is perfect or that it will work for

by JohnFromChicago (Mar 5)

Thanks Sandrea for shedding some light on this, that makes sense!

by Sandrea (Mar 5)

You need to eat up to 400 grams of turmeric per day to get 8 grams of Curcumin, as kitchen turmeric contains just 2% Curcumin, it would be impossible to eat enough to get the same dose. (In the
Category: Uncategorised

Replies: 14

Last updated: 18 July 2018