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Sd on 25 September 2019

Category: Treating CML

Replies: 4

Last updated: 26 September 2019

Need some info and a little hope
by Sd (Sep 26)

Hi Vicky,
I appreciate your encouragement. I have always been focused on nutrition, but particularly now. I lost 18# so it is critical that I consume healthy calories. I have always take a multi

by VickyK. (Sep 26)

Hi Sd,

It will get better I promise!!!I am on nilotinib and had some side effects including muscle pain headaches hair loss etc but after third month of medication I started feeling better.

by Sd (Sep 25)

Thanks for your reply. I have done extensive reading, and also consult with the docs about my questions. I have a health care background, which helps with reading the information. It is so wonderful

by AlastairC (Sep 25)

Hi and welcome to the club no-one asked to join. The range and duration of side effects of the drugs varies hugely between people. Many people on Glivec/Gleevac/Imatinib do at least ok and a
Category: Treating CML

Replies: 4

Last updated: 26 September 2019
rsgiles on 24 September 2019

Category: Blood tests

Replies: 12

Last updated: 26 September 2019

Rising PCR test
by rsgiles (Sep 26)

Ok thank you so much. My doctor that I’ve had from the beginning in 1998 retired. I still speak to him and take him out fishing once in a while and it has been years since he retired. He

by kat73 (Sep 26)

I think you're probably all right. (One thing you can count on is that there is no significant difference between the 14 and the 26.) The worry comes in as to trend, but probably

by rsgiles (Sep 26)

I am still taking gleevec and I don’t think the test changed. The only thing I did notice was that it only had the number for the international scale and that was 0.0026%. The test before this

by AlastairC (Sep 26)

Good call Kat - I've seen a number of these type of posts over the years when a lab has a new more sensitive test system and results appear to be increasing, but it is just the shiny new kit
Category: Blood tests

Replies: 12

Last updated: 26 September 2019
Wendi Englehart on 26 September 2019

Category: Drug-food interactions

Replies: 8

Last updated: 26 September 2019

CML counts going up on Sprycell
by Wendi Englehart (Sep 26)

Thank you all retest is scheduled with a new Bone Marrow Biopsy this month.

by scuba (Sep 26)

Wendi,
Your numbers are suspect. I think it may be lab error or misreporting of some kind.
Ask for an immediate re-test. Also - at 2.45 (if it were real), you would see CML cells under the

by ColoradoGuy (Sep 26)

I have switched from 100mg Dasatinib to Nilotinib. There are a couple of threads in the forum where people have switched from Dasatinib even though tolerating it well.
I would definitely get a

by Snowman35 (Sep 26)

Did you talk with your doctor? Maybe you have to try another tki! Maybe sprycel is not for you!
Category: Drug-food interactions

Replies: 8

Last updated: 26 September 2019
scuba on 26 September 2019

Category: Uncategorised

Replies: 3

Last updated: 26 September 2019

Hot off the press ...
by scuba (Sep 26)

"Why all doctors do not follow the same line?"
... because the practice of medicine is more art than science. We are all different and yet same. Our genetics come from two parents and

by Snowman35 (Sep 26)

Here in Greece they insiste that 100mg if you don't have side effects is the best dose you have to take..... Why all doctors doaesn t follow the same line?

by sheikhcml88 (Sep 26)

WOW Great news

by scuba (Sep 26)

I have been saying this for years ...
https://www.docwirenews.com/docwire-pick/hem-onc-picks/update-on-dasatin...
A recent study found evidence supporting the use of dasatinib 50 mg in chronic‐phase
Category: Uncategorised

Replies: 3

Last updated: 26 September 2019
jriccoboni on 12 September 2019

Category: Uncategorised

Replies: 12

Last updated: 25 September 2019

Achieved MMR but lost it
by Sueso (Sep 25)

Thanks a lot.

by scuba (Sep 25)

I take the one made by "bestvite". Physician naturals is another source - same ingredients.

by Sueso (Sep 24)

Hi
I don`t want to bother you but I can not find a brand for curcumin c3 complex + bioperine give a good amount of curcum ,may I know wich brand
are you using.
Thank you

by Sueso (Sep 21)

Many thanks for your information you have shared.I was taking turmeric over three years ,and I did`not get any benefit from it.Now I know why.
Category: Uncategorised

Replies: 12

Last updated: 25 September 2019
Snowman35 on 21 September 2019

Category: Treating CML

Replies: 12

Last updated: 24 September 2019

Does anyone has this fear?
by kat73 (Sep 24)

You are very welcome. We are ALL crazy in our own ways.

by Snowman35 (Sep 23)

Ahahaha no Kat73 I don't wash them!I do exactly what you say but some times you say if this if that(this is OCD) Your answers was very helpful!Every time I have this fear I ll read your comments! I

by kat73 (Sep 23)

This seems like a very specific and narrow and therefore EASY problem to fix. Your concern about actually introducing an appreciable amount of water into the pill container is legitimate.

by Snowman35 (Sep 22)

Kat73 I worry if while I take the pill from the bottle the other pills in the bottle get wet from my hands! I am not worried about the pill I take that time....Sorry for writing this again but I
Category: Treating CML

Replies: 12

Last updated: 24 September 2019
Snowman35 on 24 September 2019

Category: Treating CML

Replies: 2

Last updated: 24 September 2019

Is limejuice forbidden?
by Snowman35 (Sep 24)

Thanks David for your quick response!!

by David Fitz (Sep 24)

Really, just avoid grapefruit when it comes to fruit. Pharma companies are very risk averse, so if there was risks with lemons or limes they would be stated stated in the patient information leaflet

by Snowman35 (Sep 24)

Hi again!

I accidentally read to webmd that lime should be avoided. I have asked my doctor several times and told me that the only fruit I should avoid is grapefruit...what is your opinion
Category: Treating CML

Replies: 2

Last updated: 24 September 2019
Aeje10327 on 23 September 2019

Category: Uncategorised

Replies: 3

Last updated: 24 September 2019

Symptoms prior to diagnosis
by dobh (Sep 24)

Mine was at 180k, I was also put in Hydroxyurea, After a month my count was 80k, then moved to Gleevec and in about 2.5 week they went back to normal

by Crfharris (Sep 23)

I started taking 400 mg. gleevec on August 12. Two weeks later my blood counts were normal. I started out with a WBC of 20k. Of course there are so many other markers they are watching. At my most

by Rick B (Sep 23)

Welcome to a club you probably did not want to belong to. Based on my experience, I was diagnosed in June 2018 and on July 5 started 400 mg Imatinib daily. Not only did the WBC return to

by Aeje10327 (Sep 23)

Hi everyone, I was diagnosed with CML 2 weeks ago after a post partum visit. Several weeks prior to my diagnosis I started having tingling in my lips in addition to a strange metallic taste with
Category: Uncategorised

Replies: 3

Last updated: 24 September 2019
Tedro on 22 September 2019

Category: Side effects

Replies: 3

Last updated: 23 September 2019

Skin and Dasatinib?
by Tedro (Sep 23)

Thank you!
I pretty much just do what they say, PCR?
I know this: my resukts went from 100 to 10 to 1 or something, pretty much cured. my cll keeps my wbc up, not much maybe 20,000.
I will ask.

by kat73 (Sep 23)

I had something similar to that, only it didn't itch and never affected my scalp. Still, it was bumpy and mysterious. It came and went (several months of it) a couple of times (so, a

by Snowman35 (Sep 23)

I have a friend that had exactly the same problem at the start of her therapy(she take tasigna) after a few months all the skin oumos where gone. I think when you will get used to the drug all thw

by Tedro (Sep 22)

I've been taking 100mg Sprycel qd.
CML is pretty much gone. I also have CLL, which is not being treated and perhaps never will.
I have itch bumps on my back, upper arm(s), abdomen, neck... head
Category: Side effects

Replies: 3

Last updated: 23 September 2019
thomas.c on 23 September 2019

Category: Blood tests

Replies: 2

Last updated: 23 September 2019

1.3 log increase on dasatinib after mr4.5
by Felix (Sep 23)

Hi Thomas, you had an infection that could do it .I have had an infection twice ,an infected insect bite and a scratch on my ankle from a bramble.I left them for a few days to see if they would get

by AlastairC (Sep 23)

Hi Thomas, there are a few posts a year like yours where PCR results seem to take a big jump. Many of them prove to be an anomaly in the test process and the next result goes back to the previous

by thomas.c (Sep 23)

Hello everyone,
I was hoping to ask for your opinion... i am 33 yo, and have been undergoing treatment with 100mg dasatinib for the past 2 years. My cml was noticed quite early. Everything went
Category: Blood tests

Replies: 2

Last updated: 23 September 2019
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