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r06ue1 on 20 August 2018

Category: Treating CML

Replies: 5

Last updated: 24 August 2018

Bride D‌ie‌s of C‌an‌ce‌r Moments Before Her Wedding in the Hospital
by Romo (Aug 24)

If they shipped the order on a flying carpet, I would order the
goods, throw the order in the trash, put my wiener dog on the
flying carpet, and watch the carpet take to the skies.
All the

by Tbrand (Aug 24)

Sure, and promised shipment on a flying carpet.

by Romo (Aug 23)

I also know that Quality Dasatnib was manufactured in India.
https://timesofindia.indiatimes.com/city/mumbai/Interesting-turn-in-Dasa...

And later denied:
https://economictimes.indiatimes.com/

by r06ue1 (Aug 21)

It is true there are a lot of fake, brand name labels in China but isn't that free market economics without restriction?

There was a movie in China that went viral just recently
Category: Treating CML

Replies: 5

Last updated: 24 August 2018
Romo on 18 August 2018

Category: Uncategorised

Replies: 6

Last updated: 24 August 2018

Any Good Stories.
by r06ue1 (Aug 24)

Aren't we ALL a good story? Since the discovery of these amazing medications, we now have a chance, before these medicines... well, you know.

Embrace every day as if it were

by MJP (Aug 24)

Decided to get intraocular implants so i wouldn’t have to wear glasses anymore. Eye surgeon required my general practitioner to sign that I was healthy enough for the procedure (

by Romo (Aug 24)

I guess there are only a few good stories.
It’s not easy being CML.
Romo

by Tbrand (Aug 18)

Almost 3 years ago, I went to my Doctor for a swollen knee issue, blood test and then told probably leukemia. Told the Onc that there is a relationship with my knee and CML. He laughed, but when the
Category: Uncategorised

Replies: 6

Last updated: 24 August 2018
Stacey Doubblestein on 20 August 2018

Category: Blood tests

Replies: 7

Last updated: 24 August 2018

WBC count dramatically reduced 3 weeks on Gleevec
by LouiseS (Aug 24)

I think it’s good news when you don’t have an enlarged spleen. No spleen enlargement means your CML should be easier to treat ( or at least this was considered the case before second gen TKIs were

by Tbrand (Aug 23)

My spleen was normal, any idea why?

by Stacey Doubblestein (Aug 23)

My husband's is 13 cm beyond and his doctor explained that to mean two times it's normal size after his ultrasound and measurements

by MartinZA (Aug 21)

It took forever for my spleen to get back to normal - at least 3 months. I'm now almost three years in and still have discomfort in the spleen area. So don't worry! It is normal for this to take
Category: Blood tests

Replies: 7

Last updated: 24 August 2018
vholly on 19 August 2018

Category: Organising your life

Replies: 12

Last updated: 23 August 2018

Finding a healthy balance
by vholly (Aug 23)

Brilliant Scuba, thanks. I’m back to see the haematologist next Thursday, will let you know how I go.
Feeling less lonely & also reassured by all the responses - agree with others’ posts

by scuba (Aug 22)

Hi Victoria,
Show your doctor these references:
http://www.bloodjournal.org/content/118/21/4440?sso-checked=true
[http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e18551
Conclusions:

by vholly (Aug 21)

Hi Louise,
thanks for your message. I agree, this forum is a gift, I felt very lonely & scared after my diagnosis then even worse when it became clear that Imatinib wasn’t for me. It’s

by vholly (Aug 21)

Hi Scuba,
‘thanks for getting back to me, I really appreciate it.
I’m on 100mg Sprycel. Based on your posts, I questioned this with my haematologist last week, telling her that Sprycel works
Category: Organising your life

Replies: 12

Last updated: 23 August 2018
sal on 28 November 2008

Category: Uncategorised

Replies: 8

Last updated: 20 August 2018

Heart Failure and Dasatinib
by Isla D (Aug 20)

Sal
Agree with everyone else that your husband needs advise from a good CML specialist about this and if it's pleural effusion the recommendation is to stop Sprycel until the effusion clears.
Try

by Isla D (Aug 20)

SwanValleySue
I have also developed a heart murmur on TKIs (Dasatinib 100mg first six months, 50mg last two years).
Mitral valve regurgitation has gone from trivial to mild-moderate.
Left

by W Mann (Aug 20)

Hi Skip,

I am curious, how was your CML treated before the advent of TKI's? I am not trying to be nosy, I am simply curious and if you rather not talk about it, I understand.

by skipd (Dec 6)

Hi Sal

Well I was on Dasatinib and had a very hard time, in fact I had so much plural effusion they tapped me (three times) and removed about 8.5 500ml bottles over a 3 to 4 week period. I
Category: Uncategorised

Replies: 8

Last updated: 20 August 2018
W Mann on 14 August 2018

Category: Side effects

Replies: 7

Last updated: 19 August 2018

CML since 2005, Suffering from Bone Pain ever since
by Tazdad (Aug 19)

I highly recommend considering the advice from Scuba. I've only had cml for 7 years but also suffer from severe pain. Opiods are my only help. And they only help a little but better than nothing. I

by scuba (Aug 17)

Bone pain following TKI cessation is known to occur. It is a withdrawal symptom as the body re-adapts. The pain should fade away over time.
It is interesting that you stopped for two months without

by W Mann (Aug 17)

Thank you. I am currently taking both methadone and morphine, both every 8 hours (the morphine is for breakthrough pain) and needless to say I can't work anymore. I can't try the CBD oil

by W Mann (Aug 17)

Thank you so much.
I see my onc next month and will be talking to her about either reducing it or stopping it for a while and see if that helps. I would love to be able to stop it but every
Category: Side effects

Replies: 7

Last updated: 19 August 2018
sg3 on 12 August 2018

Category: Children & young people

Replies: 5

Last updated: 18 August 2018

Bcr-abl results <.01%
by cmljax (Aug 18)

NCCN guidelines say you should reach 0.1% by 12 months. I reached it in 90 days and hit .006% in 6 months, so I was a very fast responder and was able to reduce dose 3 times during the first 9

by kat73 (Aug 16)

Took me about 2 years on Sprycel to get a consistent .0something. Took a year or two more to get to <0.01.

by sg3 (Aug 16)

He has been on 100mg of dasatinib for 9 months. In that time his results have been 3.6, 1.3, 1.9 and 0.9

by RC Kirk (Aug 13)

It took me over five years to get to that level. My doctor was concerned when I didn't reach 0.1% after one year of treatment. But my BCR-ABL level has been a mostly downward trend since
Category: Children & young people

Replies: 5

Last updated: 18 August 2018
DawnD on 16 August 2018

Category: About CML

Replies: 7

Last updated: 17 August 2018

Thyroid
by MJP (Aug 17)

Yes, TKIs can mess with thyroid hormones, especially for those who are on replacement therapy. And despite what my first Dr insisted, those changes can occur rapidly. I had my

by DawnD (Aug 16)

Yeah I kinda thought the Pomegrante juice wasn’t a huge deal. Thx David,

by DawnD (Aug 16)

The National CML society website is where I read the information.

by Gitel (Aug 16)

Thanks David, I should have searched before I posted. I have located material on the Thyroid issue. Gitel
Category: About CML

Replies: 7

Last updated: 17 August 2018
onekayaker on 16 August 2018

Category: Uncategorised

Replies: 3

Last updated: 17 August 2018

Dasatinib 100mg to be lower to 50th after trip to emergency center at MD Anderson
by Romo (Aug 17)

They want it before you change it with lifestyle.
Let them have there way.
It’s for your own good. You might be special.
Like me!
Romo

by onekayaker (Aug 17)

Thanks Romo. Liver good never drank. I was waiting game for my doc'said nurse to go over numbers with me as she said she would at the 6:30 am rounds but no nurse.

by Romo (Aug 16)

My first 3 months of 100mg dastinib.
My Liver numbers went to:
AST 80
ALT 66
I was told my liver was stressed.
I stopped the Gin and Tonics.
Now they are:
AST 37
ALT 33

by onekayaker (Aug 16)

Tuesday I could tell I was running a low grade fever so after contacting the leukemia team they asked me to come in. I ended up being admitted be a use they wanted to know the source for my
Category: Uncategorised

Replies: 3

Last updated: 17 August 2018
Romo on 16 August 2018

Category: Uncategorised

Replies: 0

Last updated: 16 August 2018

Medical Problems.
by Romo (Aug 16)

Old man goes to the doctor. The doctor says
“The test results are back, and I’m sad to say you have cancer and Alzheimer’s.”.
The old man says “Phew! At least it’s not cancer!”
Category: Uncategorised

Replies: 0

Last updated: 16 August 2018
DawnD on 15 August 2018

Category: Children & young people

Replies: 4

Last updated: 16 August 2018

Blood test
by DawnD (Aug 16)

Yes, sounds as if you have fantastic care:) Thank you for the info! Be well, Dawn

by Gitel (Aug 16)

I believe the frequency depends on your Physician. I had CBC every week following hospital release and start on Gleevac. All ok for 6 weeks when wbc started to rise. Onc phoned me to see if I

by alexmcpee (Aug 15)

I had my first blood test about 6 weeks after starting a TKI. It was a nerve wracking time to see if they had started to work and somewhere between 1 and 3 weeks I’d hit CHR. All tests/milestones

by MJP (Aug 15)

Which labs? I was having weekly CBC/CMP testing following diagnosis and starting Sprycel. Once I hit complete hemotalogical response it was every two weeks. It’s now every three
Category: Children & young people

Replies: 4

Last updated: 16 August 2018
Nana Simone on 11 August 2018

Category: Uncategorised

Replies: 9

Last updated: 16 August 2018

Working whilst on sprycel
by Nana Simone (Aug 16)

Thanks for the info, I will try to attend,
You are right, I do tend to push my limits, especially around others... I don’t know what I’m trying to prove but it’s not doing any good. I find it

by Nana Simone (Aug 16)

I truly hope your treatment becomes more tolerable, that is one of the hardest thing to put up with, all the bone & muscle pain, restless night...

Thank you, I didnt realise the

by sandy craine (Aug 14)

Nancy- welcome to this forum. You will find support and solace here.
On 22nd September (which this year coincides with World CML Day) there is a National UK CML patient meeting in Birmingham, UK. If

by LouiseS (Aug 12)

Hi Nancy
I am glad you plucked up the courage to post. The first time is hard!
My husband is the one with CML and he is coming up on a year of being diagnosed. I think your roller
Category: Uncategorised

Replies: 9

Last updated: 16 August 2018
Fritz on 6 August 2018

Category: Children & young people

Replies: 1

Last updated: 15 August 2018

Introduction
by DawnD (Aug 15)

Hi Fritz, Welcome. I am new too and still learning a lot. :) Wishing you well!! Cheers , Dawn

by Fritz (Aug 6)

Hi folks! this is my very first post to this site. Wishing anyone who reads this a better day tomorrow!!!
I am responding to the comment about "low dose radiation tied to higher leukemia
Category: Children & young people

Replies: 1

Last updated: 15 August 2018
gautamjaiswal on 14 August 2018

Category: Other conditions

Replies: 2

Last updated: 15 August 2018

Weight Loss
by Tbrand (Aug 15)

After a while the pounds will pack back on without diet/exercise just like Motto Motto.

by alexmcpee (Aug 14)

Hi
I lost a fair amount of weight post DX and was one of the things my family kept saying to me and one of the reasons that prompted me to get checked out. I was diagnosed in March and put on

by gautamjaiswal (Aug 14)

Hi,
I am on Glivac 400mg since the last 2 months. My WBC count is now within range. I regularly experience weakness in my legs with cramps and intermittent pain. Moreover, I am loosing weight
Category: Other conditions

Replies: 2

Last updated: 15 August 2018
Clarek on 30 July 2018

Category: Treating CML

Replies: 5

Last updated: 14 August 2018

BCR results
by David Fitz (Aug 14)

Hi Clare,
One set of targets which is often discussed as a good indicator is reaching 10% by 3 months. Then 1% at 6 months, and 0.1% by 12 months. These would be considered "optimal" responses

by ColoradoGuy (Aug 14)

I would say as long as you are trending in the right direction you are still good. Mine looked like the following:
64%, 23% (6 months), 1.8% (9 months), 12 month at the end of this month.

by Clarek (Aug 14)

Hi,
I asked about my PCR tests and apparently I've had 3. The results of the 1st one in February was 82%, then May was 22% and this months went down to 2.4%, and I still don't know if this is ok.

by David Fitz (Jul 30)

Hi Clare,
It's common not to have a PCR test (which tests for the existence of BCR-Abl, the fusion protein that drives CML) until 3 months after diagnosis. However, that means you ought to
Category: Treating CML

Replies: 5

Last updated: 14 August 2018
Trevorp93 on 12 August 2018

Category: Treating CML

Replies: 4

Last updated: 13 August 2018

Sprycel 100mg Help with returning of an a eye floater
by Gitel (Aug 13)

How common this is with CML I do not know. Ask your Onc, but do see an ophthalmologist who knows about the retina. Floaters do appear when the ball of fluid in your eye separates from the retina. In

by Trevorp93 (Aug 13)

Hi everyone thanks for getting back to me on this. I went to the emergency room for this and they recently told them that this was a vitreous hemorrhag. I was trying to see if anyone has gone though

by David Fitz (Aug 13)

Hi Gitel,
It sounds like I had similar problems to you. CML made me lose quite a lot of eyesight - I couldn't see things in the centre of my vision very well. For example, I could not read text on a

by Gitel (Aug 13)

I thought eye floaters were related to the retina. When I had them, and they stayed, I was sent to an ophthalmologist who found I had a slight tear in the retina. part of aging. They had healed.
Category: Treating CML

Replies: 4

Last updated: 13 August 2018
rosegunton on 27 July 2018

Category: Uncategorised

Replies: 8

Last updated: 13 August 2018

CML Birmingham Support Group
by Nimbus2 (Aug 13)

Thank you for arranging Saturday's support group meeting.
Joanne Mason's excellent presentation answered many questions that were floating around in my mind.
I took the advice of the

by Nimbus2 (Aug 2)

Almost every little boy or girl can join Facebook without issue, but a 62-year-old man with CML is locked out. It is impossible to communicate with these people. They even have a copy of a

by David Fitz (Jul 30)

Hi Stephen, I had this same experience when signing up to Facebook. A right pain. Worth persisting though, eventually it did all work and I never had a log on issue since. I still don't quite know

by Nimbus2 (Jul 30)

I am locked out of Facebook again ("unusual activity on your account") and near the point of giving up. I have sent then yet another photograph. Third attempt!
Category: Uncategorised

Replies: 8

Last updated: 13 August 2018
Stacey Doubblestein on 8 August 2018

Category: Children & young people

Replies: 7

Last updated: 11 August 2018

First FISH results
by David Fitz (Aug 11)

The Emperor of all Maladies is fascinating. I read it when I was diagnosed with CML, just to understand cancer better. Came as a total shock to find the book opens with CML! Really well written book

by kat73 (Aug 11)

Great book. Also read The Emperor of All Maladies (there's some CML overlap). Big fat book but a swift read - fantastic.

by Stacey Doubblestein (Aug 10)

I listened to the Audible book The Philidelphia Chromosome it is amazing how they figured this out and how lucky the newly diagnosed wont suffer as much as those before

by Stacey Doubblestein (Aug 10)

Thank you so very much - we feel so much more at ease now
Category: Children & young people

Replies: 7

Last updated: 11 August 2018
onekayaker on 9 August 2018

Category: Uncategorised

Replies: 22

Last updated: 11 August 2018

Newly diagnosed and looking for feedback on first few days taking tki pills
by scuba (Aug 11)

Thanks David!

by David Fitz (Aug 10)

Private messaging coming soon ... it's on the list of top priorities (after better spam management!).
David.

by scuba (Aug 10)

One Kayacker,
I don't believe this forum has a private message mechanism. I would not post your email address here. Perhaps David has a way.
Why are you waiting 30 days before taking vitamin D3?

by onekayaker (Aug 10)

Scuba,
i did send a message to my leukemia doctor about the D3(learned this from your post). Wanting to wait 30 days before I go on that. When I joined I allowed people able to email me
Category: Uncategorised

Replies: 22

Last updated: 11 August 2018
Nimbus2 on 7 August 2018

Category: Uncategorised

Replies: 5

Last updated: 10 August 2018

Full Blood Count and IG
by Nimbus2 (Aug 10)

The doctor did mention this, Kat73, and you are quite right. I was commenting upon the Full Blood Count (FBC), but the doctor did mention that my Kidney function was slightly impaired. The blood

by kat73 (Aug 10)

You do, however, need to also keep an eye on some of the numbers on your CMP (Complete Metabolic Panel) which should be done every time you have the CBC done. Like: creatinine, BUN and

by Nimbus2 (Aug 10)

I now have some answers from the doctor. I am told that the automated instant FBC measurement machine typically fails to register BASO when the white blood count is high. The IG figure is of no

by Nimbus2 (Aug 9)

This was the answer that I could not Google satisfactorily. Thank you, David.
Looking back through my blood history, the Basophil count was the first thing to go wildly wrong (even before
Category: Uncategorised

Replies: 5

Last updated: 10 August 2018