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scuba on 20 September 2019

Category: Uncategorised

Replies: 5

Last updated: 23 September 2019

Big decision coming up ...
by israel (Sep 23)

Hi Scuba,
Congratulations on being more than two years undetected (on low TKI dose)
I'm writing to wish you the best in achieving your TFR goal. You made numerous contributions to the internet

by cmljax (Sep 21)

As you know from my recent post, I too am contemplating the same decision, except I don't have the quite as long on treatment or durable DMR. In my case, I am also dealing with

by Karinne (Sep 20)

Hi Scuba,
I really understand your ambivalence with the choice. For me, it was easier because I had to stop for my lung to recover from pleural effusion. No hesitation right?
I don’t

by scuba (Sep 20)

That's my plan - to decide after I meet with the new oncologist. I'll keep taking my 20 mg dasatinib until my meeting. I am eager to try, however, as I will have a 50-50 shot given current
Category: Uncategorised

Replies: 5

Last updated: 23 September 2019
scuba on 22 September 2019

Category: Uncategorised

Replies: 6

Last updated: 23 September 2019

Latest observations on TFR success with those who have kinase mutations
by cmljax (Sep 23)

Scuba:
I thought you have been on treatment a lot longer than 3 years, which should be in your favor. Good luck. I know you will keep us informed.

by Snowman35 (Sep 22)

I know how you feel. I feel exactly the same! I want to know if i can live without tki! But I will push my self and take them two more years and I will try tfr..!

by scuba (Sep 22)

CMLJAX answered your question in terms of data. Dr. Cortes also mentioned to me personally that 5 years CMR is ideal for trying with two years being the minimal start point. The improvement over two

by Snowman35 (Sep 22)

I ve read exactly the same! I am Mmr4.5 2.5 years. I reached mmr 4.5 after nine months of treatment with sprycel. I have decided to try tfr after five years+ of treatent
Category: Uncategorised

Replies: 6

Last updated: 23 September 2019
JeremyP on 21 September 2019

Category: Uncategorised

Replies: 4

Last updated: 22 September 2019

UK CML patient conference
by JeremyP (Sep 22)

Great!

Thanks again David

by David Fitz (Sep 22)

In the meantime, you could look at some of the videos from last year:
https://cmlsupport.org.uk/uk-cml-patient-conference-2018

by JeremyP (Sep 22)

Thanks very much David, that's great. I learnt an awful lot from watching the feed but, as I said, I missed some of it and other parts were a lot to take in for a CML newbie and it'll be good to go

by David Fitz (Sep 22)

I will try to get recordings up in the next few weeks. It is quite a job, so hard to find the time. But we will do it.
Category: Uncategorised

Replies: 4

Last updated: 22 September 2019
Jenny9391 on 21 September 2019

Category: Treating CML

Replies: 8

Last updated: 21 September 2019

Second drug to fail... worried mum
by ColoradoGuy (Sep 21)

I was not aware that was the case. Probably for the possible side effects I would imagine but maybe a trial on low dose with required approvals is an option. In any case mutation testing will help

by David Fitz (Sep 21)

Ponatinib doesn’t hold an indication for paediatric CML - so it is not as simple as an adult case.
That’s not to say it doesn’t work in children with T315i, it’s just

by scuba (Sep 21)

It's interesting some doctors are now more aware of vitamin D's role in the immune system and blood development. Bone and blood go together. They are from the same embryonic cells driven

by Jenny9391 (Sep 21)

Theres been no mention about a growing number of blast cells. They have mentioned the vitamin d to me and she now takes a supliment daily. I didnt understand the full extent of why it was important
Category: Treating CML

Replies: 8

Last updated: 21 September 2019
Felix on 19 September 2019

Category: Blood tests

Replies: 5

Last updated: 21 September 2019

Can any one help with this please
by Snowman35 (Sep 21)

had happened to me exactly the same thing! There is absolutely no reason to worry about!! For some reason your blood didn t stored properly so they couldn t do pcr... Nothing to worry about!

by Felix (Sep 19)

Haha David ,my words exactly and a few more expletives.This is happening at a hospital which is supposed to be excellent with experts and not my local one ,very annoying .

by David Fitz (Sep 19)

All it means is that the lab testing process fucked up. That's it. Seems it's not the first time!
As you say, the bit of anxiety this can cause is that you go a bit longer between test

by Felix (Sep 19)

Hi David ,thank you so much for your explanation ,a lot of it has gone over my head,as I never get much information from my Doc , but you have sort of put my mind at rest .This test was done at the
Category: Blood tests

Replies: 5

Last updated: 21 September 2019
Sueso on 13 September 2019

Category: Uncategorised

Replies: 9

Last updated: 21 September 2019

My blood test
by Sueso (Sep 21)

Thank you very much you make me feel better about my Bcr result.My Doctor scared me .

by Sueso (Sep 21)

Thank you so much ,I get it now.

by David Fitz (Sep 19)

PCR / BCR are often confused.
The test is a polymerase chain reaction (PCR) test, which is used in medicine and science for many things - not just CML testing.
However, in the case of

by Nimbus2 (Sep 19)

The tests are quite expensive and testing every three months is the normal approach. At three months I had similar results BCR-ABL1 positive 17% and Ph positive 15%. So I too did not meet the target
Category: Uncategorised

Replies: 9

Last updated: 21 September 2019
MANNI OBEROI on 19 September 2019

Category: Children & young people

Replies: 1

Last updated: 19 September 2019

All hematology reports are good what's next
by David Fitz (Sep 19)

Hi Ramandeep -
What’s next? If you mean your haematological reports are excellent, that sounds like you have reached a “complete haematological response”. Is that right? That

by MANNI OBEROI (Sep 19)

Hi all nice people I am ramandeep....diagnosed last month....just want to know all my hematological reports are excellent what's next
Category: Children & young people

Replies: 1

Last updated: 19 September 2019
David Fitz on 23 September 2018

Category: Uncategorised

Replies: 12

Last updated: 18 September 2019

Romo, Romo, where(fore) art thou Romo.
by scuba (Sep 18)

Romo's back! Very cool.
Spot on about CML, doctors and the rest.

by cmljax (Sep 18)

Don't be a stranger anymore Romo - your insights, humor, and compassion are needed by all of us

by David Fitz (Sep 18)

What a nice surprise to see a message from you this morning. We missed you! I’m really pleased to hear you are doing well.
David.

by RC Kirk (Sep 18)

Awesome! Thanks for checking in and filling us in on your exploits.
Category: Uncategorised

Replies: 12

Last updated: 18 September 2019
Ontasigna on 17 September 2019

Category: Treating CML

Replies: 1

Last updated: 17 September 2019

Chronic Cough - Antibiotic/Tasigna
by David Fitz (Sep 17)

General advice would be to temporarily stop nilotinib if there is no alternative to this particular antibiotic. Is your doctor aware of the cardiac related potential interaction?
David.

by Ontasigna (Sep 17)

Hi All,
It's been 2 weeks that I have wet cough. I had been to doctor. He has prescribed me Antibiotics (AZithromycin) and montelukast.
It looks like azthromycin should not be taken when on Tasigna
Category: Treating CML

Replies: 1

Last updated: 17 September 2019
cmljax on 10 September 2019

Category: Uncategorised

Replies: 27

Last updated: 16 September 2019

Should I try TFR??
by tomnash321 (Sep 16)

I can understand why he will not go lower on Nilotinib but that resistance theory is new to me.
Let me know if Dr Cortes helps, if not I can give you other contacts. It just frustrates me to

by cmljax (Sep 16)

So when I pushed my onc for his rationale for why he wouldn't approve me to switch to low dose Sprycell or low dose Bosulif, here's his reply:
Because below a certain dose level, we

by cmljax (Sep 16)

Thanks Tom. I have actually already sent an email to Dr. Cortes this morning. He recently moved from MD Anderson to Georgia Cancer Center in Augusta, Georgia. His new email (make a

by tomnash321 (Sep 16)

I spoke to someone at Hammersmith today and they suggested talking to MD Anderson. I actually have Dr Cortes' email as he gave it out at a talk I went to in Buenos Aires last year. I would
Category: Uncategorised

Replies: 27

Last updated: 16 September 2019
IvanOpinion on 23 January 2017

Category: Uncategorised

Replies: 16

Last updated: 16 September 2019

Travel insurance for CML, without screening
by jane heather newberry (Sep 16)

I am planning on a trip to the US shortly. i have called Worldwide for a quote and although coming out at the cost of another plane ticket, the person i spoke to on the phone was very helpful

by Stephen Carson (Sep 14)

Hi. I found out when trying to renew my travel insurance with Eurotunnel that they no longer give travel insurance unless you are booking travel with them. Anyone found any other good companies? I

by IvanOpinion (Nov 17)

I withdraw my previous recommendation of ETA. They have changed they whole approach. You are now expected to buy the policy, then phone to disclose PMCs and see what extra premium they want. I

by David Fitz (Sep 18)

Hi Rod,
I've taken ciprofloxacin a couple of times whilst on dasatinib. The haematologist I see is perfectly happy with this, I specifically checked with her and she says it's something that they
Category: Uncategorised

Replies: 16

Last updated: 16 September 2019
Kathyp on 15 September 2019

Category: Uncategorised

Replies: 1

Last updated: 16 September 2019

Can anyone explain this result please
by RC Kirk (Sep 16)

If I'm understanding what the google has served up, you have a mildly elevated eosinophil count. It could be caused by something as simple as taking a laxative. Here's some

by Kathyp (Sep 15)

Hi , just been looking at my medical results on line and it says my eosinophil results are abnormal at 0.72 x
Category: Uncategorised

Replies: 1

Last updated: 16 September 2019
shayner on 13 September 2019

Category: Side effects

Replies: 16

Last updated: 15 September 2019

Fatigue increase
by shayner (Sep 15)

Hi ffiorellino, I’m ready to try anything! I’ll give ginger a try, I know it’s great for digestion but if it helps the exhaustion too that would be great. I do exercise but gently

by shayner (Sep 15)

Thanks for coming back to me on that William, think we are all tempted by the thought of coming completely off the medication, but having CML makes us all realise how precious every day we have is

by ffiorellino (Sep 15)

Hi shayner, I've similar effects (I'm on generic Imatinib 400 mg/d and had dx 2yrs 6 mnts ago). I try not to give up in doing some excercise. Also, something that looks to help me is

by William1567 (Sep 15)

Shayner, I didn't take breaks for trials. It was just a personal choice. I needed relief from the fatigue and other side effects. My onc always says that a two week break every couple of years
Category: Side effects

Replies: 16

Last updated: 15 September 2019
Sarah63 on 15 September 2019

Category: Treating CML

Replies: 0

Last updated: 15 September 2019

Selenium -
by Sarah63 (Sep 15)

Hello All of you
Category: Treating CML

Replies: 0

Last updated: 15 September 2019
alison on 13 September 2019

Category: Uncategorised

Replies: 4

Last updated: 14 September 2019

Starting Bosulif - input please
by alison (Sep 14)

@cmljax His specialist is not as involved in CML as he used to be and you would be way better off consulting with someone who is totally immersed in CML. There are plenty around.

by cmljax (Sep 14)

Thank you so much Alison for this response and for your other response to my post. If you guys are in the US, would you mind sharing the name and contact info for your husband's specialist

by alison (Sep 13)

@cmljax Any CML specialist (as opposed to a community oncologist) will know all the latest dosing recommendations. My husband's specialist expects he may need 200 or 300 mg Bosulif but is

by cmljax (Sep 13)

Hi and good luck to your husband on Bosulif - will be interested to hear if 100 mg does the trick to get him back to MMR and below. Please read my post "Should I try TFR." I am
Category: Uncategorised

Replies: 4

Last updated: 14 September 2019
jasonswife1686 on 13 September 2019

Category: Uncategorised

Replies: 1

Last updated: 13 September 2019

Bcr count
by scuba (Sep 13)

Is this a FISH result or PCR?
What is your blast cell percentage?

by jasonswife1686 (Sep 13)

Hello all.
Its been a while since I’ve posted. I recently had a major spike from 9% less than a month ago to 67% on Monday.
We met with a transplant coordinator and are starting to
Category: Uncategorised

Replies: 1

Last updated: 13 September 2019
MANNI OBEROI on 24 August 2019

Category: Uncategorised

Replies: 8

Last updated: 13 September 2019

Legs are paining
by MANNI OBEROI (Sep 13)

Hi David.....good news no pain now....still taking veenat 400...my wbc is 5000 now...thanks david for ur help and support always

by David Fitz (Sep 2)

Manni,
Sorry for taking so long to reply - I’ve been busy recently.
When I first took Imatinib I had terrible leg pains - dull ache with intermittent sharp, shooting pain.
We tried

by ColoradoGuy (Aug 31)

I also had sleepless nights initially and melatonin and tylenol pm helped. Not a long term solution but will help you get to work for a few days. Take care.

by MANNI OBEROI (Aug 30)

Hi Colorado....all blood tests till today are good but pains headaches little fever at night only making alot trouble to me.....sleepless night are horrible for me..thanks for the advice sir....
Category: Uncategorised

Replies: 8

Last updated: 13 September 2019
Kathyp on 10 September 2019

Category: Uncategorised

Replies: 3

Last updated: 13 September 2019

15 years on glivec
by GEP (Sep 13)

Yep, 15 years in myself and still chronic fatigue. I just try to work through it but i find it’s worse when I have time off and not keeping my mind occupied.
i’m on 300 immatinib and in

by Kathyp (Sep 12)

Hi 600 mg and I’m in mmr x

by David Fitz (Sep 11)

Hi -
I guess my first question is going to be the usual two:

what dose are you on?
what's your latest PCR?

David.

by Kathyp (Sep 10)

Hi all , hope everyone is ok? Been on gluvec now for 15 years and doing fab but the chronic fatigue is overwhelming, seems worse than ever. Do any of you long term glivece users have the same
Category: Uncategorised

Replies: 3

Last updated: 13 September 2019
Chuckster on 12 September 2019

Category: Blood tests

Replies: 1

Last updated: 13 September 2019

FISH Test Results.
by scuba (Sep 13)

No surprise.
Good news.

by Chuckster (Sep 12)

Fish Results: 1.5%
Down 1 % from 2.5% on July 19th.
Just came back from my Oncologist appt.
Staying on 20 MG of sprycel for another cycle ( 60 Days) as she is ok with this as its a downward
Category: Blood tests

Replies: 1

Last updated: 13 September 2019
Tr0glodyte on 12 September 2019

Category: Uncategorised

Replies: 0

Last updated: 12 September 2019

Post transplant donor now has lymphoma - do I need to worry
by Tr0glodyte (Sep 12)

I am 10 years post transplant and in the main doing well. I have just learned that my donor has been diagnosed with non hodgkins lymphoma. I am not due at the hospital for several months. Is this
Category: Uncategorised

Replies: 0

Last updated: 12 September 2019